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1.  Changes in the quality of doctor–patient communication between 1982 and 2001: an observational study on hypertension care as perceived by patients and general practitioners 
BMJ Open  2011;1(1):e000203.
Background
The rise of evidence-based medicine may have implications for the doctor–patient interaction. In recent decades, a shift towards a more task-oriented approach in general practice indicates a development towards more standardised healthcare.
Objective
To examine whether this shift is accompanied by changes in perceived quality of doctor–patient communication.
Design
GP observers and patient observers performed quality assessments of Dutch General Practice consultations on hypertension videotaped in 1982–1984 and 2000–2001. In the first cohort (1982–1984) 81 patients were recorded by 23 GPs and in the second cohort (2000–2001) 108 patients were recorded by 108 GPs. The GP observers and patient observers rated the consultations on a scale from 1 to 10 on three quality dimensions: medical technical quality, psychosocial quality and quality of interpersonal behaviour. Multilevel regression analyses were used to test whether a change occurred over time.
Results
The findings showed a significant improvement over time on all three dimensions. There was no difference between the quality assessments of GP observers and patient observers. The three different dimensions were moderately to highly correlated and the assessments of GP observers showed less variability in the second cohort.
Conclusions
Hypertension consultations in general practice in the Netherlands received higher quality assessments by general practitioners and patients on medical technical quality, psychosocial quality and the quality of interpersonal behaviour in 2000–2001 as compared with the 1980s. The shift towards a more task-oriented approach in hypertension consultations does not seem to detract from individual attention for the patient. In addition, there is less variation between general practitioners in the quality assessments of more recent consultations. The next step in this line of research is to unravel the factors that determine patients' quality assessments of doctor–patient communication.
Article summary
Article focus
Doctor–patient communication in hypertension consultations has become more business-like and task-oriented in the past few decades.
Shifts in communication styles in general practice may have produced changes in quality assessments of doctor–patient communication by general practitioners and patients.
Key messages
Compared with 20 years earlier (1982–1984), hypertension consultations recorded in 2000–2001 received higher quality assessments by GP observers and patient observers on three distinct quality dimensions: medical technical quality, psychosocial quality and the quality of interpersonal behaviour.
There was less variation between general practitioners in the quality assessments of more recent consultations.
Strengths and limitations of this study
Videotaped real-life general practice consultations from two distinct periods were analysed, which means that the findings refer to actual behaviour in general practice.
The quality assessments were made according to the same protocol in both periods.
Assessments of the GPs were executed by contemporary peers, while the assessments of patients were performed retrospectively. However, the concurrence of assessments of patient observers and GP observers in their different contexts reinforces our conclusions.
The generalisability of the findings is restricted to hypertension consultations, which involve a high proportion of repeat visits.
doi:10.1136/bmjopen-2011-000203
PMCID: PMC3191582  PMID: 22021787
2.  Shifts in doctor-patient communication between 1986 and 2002: a study of videotaped General Practice consultations with hypertension patients 
BMC Family Practice  2006;7:62.
Background
Departing from the hypotheses that over the past decades patients have become more active participants and physicians have become more task-oriented, this study tries to identify shifts in GP and patient communication patterns between 1986 and 2002.
Methods
A repeated cross-sectional observation study was carried out in 1986 and 2002, using the same methodology. From two existing datasets of videotaped routine General Practice consultations, a selection was made of consultations with hypertension patients (102 in 1986; 108 in 2002). GP and patient communication was coded with RIAS (Roter Interaction Analysis System). The data were analysed, using multilevel techniques.
Results
No gender or age differences were found between the patient groups in either study period. Contrary to expectations, patients were less active in recent consultations, talking less, asking fewer questions and showing less concerns or worries. GPs provided more medical information, but expressed also less often their concern about the patients' medical conditions. In addition, they were less involved in process-oriented behaviour and partnership building. Overall, these results suggest that consultations in 2002 were more task-oriented and businesslike than sixteen years earlier.
Conclusion
The existence of a more equal relationship in General Practice, with patients as active and critical consumers, is not reflected in this sample of hypertension patients. The most important shift that could be observed over the years was a shift towards a more businesslike, task-oriented GP communication pattern, reflecting the recent emphasis on evidence-based medicine and protocolized care. The entrance of the computer in the consultation room could play a role. Some concerns may be raised about the effectiveness of modern medicine in helping patients to voice their worries.
doi:10.1186/1471-2296-7-62
PMCID: PMC1630692  PMID: 17064407
3.  Don’t Forget the Doctor: Gastroenterologists’ Preferences on the Development of mHealth Tools for Inflammatory Bowel Disease 
JMIR mHealth and uHealth  2015;3(1):e5.
Background
Inflammatory bowel disease (IBD) encompasses a number of disorders of the gastrointestinal tract. Treatment for IBD is lifelong and complex, and the majority of IBD patients seek information on the Internet. However, research has found existing digital resources to be of questionable quality and that patients find content lacking. Gastroenterologists are frontline sources of information for North American IBD patients, but their opinions and preferences for digital content, design, and utility have not been investigated. The purpose of this study is to systematically explore gastroenterologists’ perceptions of, and design preferences for, mHealth tools.
Objective
Our goal was to critically assess these issues and elicit expert feedback by seeking consensus with Canadian gastroenterologists.
Methods
Using a qualitative approach, a closed meeting with 7 gastroenterologists was audio recorded and field notes taken. To synthesize results, an anonymous questionnaire was collected at the end of the session. Participant-led discussion themes included methodological approaches to non-adherence, concordance, patient-centricity, and attributes of digital tools that would be actively supported and promoted.
Results
Survey results indicated that 4 of the 7 gastroenterologists had experienced patients bringing digital resources to a visit, but 5 found digital patient resources to be inaccurate or irrelevant. All participants agreed that digital tools were of increasing importance and could be leveraged to aid in consultations and save time. When asked to assess digital attributes that they would be confident to refer patients to, all seven indicated that the inclusion of evidence-based facts were of greatest importance. Patient peer-support networks were deemed an asset but only if closely monitored by experts. When asked about interventions, nearly all (6/7) preferred tools that addressed a mix of compliance and concordance, and only one supported the development of tools that focused on compliance. Participants confirmed that they would actively refer patients and other physicians to digital resources. However, while a number of digital IBD tools exist, gastroenterologists would be reluctant to endorse them.
Conclusions
Gastroenterologists appear eager to use digital resources that they believe benefit the physician-patient relationship, but despite the trend of patient-centric tools that focus on concordance (shared decision making and enlightened communication between patients and their health care providers), they would prefer digital tools that highlight compliance (patient following orders). This concordance gap highlights an issue of disparity in digital health: patients may not use tools that physicians promote, and physicians may not endorse tools that patients will use. Further research investigating the concordance gap, and tensions between physician preferences and patient needs, is required.
doi:10.2196/mhealth.3987
PMCID: PMC4319145  PMID: 25608628
mHealth; adherence; concordance; compliance; shared decision making; therapeutic alliance; gastroenterology; IBD; ulcerative colitis
4.  Computer-based quality of life questionnaires may contribute to doctor–patient interactions in oncology 
British Journal of Cancer  2002;86(1):51-59.
It is well recognized that oncologists should consider patients' quality of life and functioning when planning and delivering anticancer treatment, but a comprehensive assessment of how a patient feels requires a thorough inquiry. A standardized measurement of patients' quality of life may support clinicians in identifying important problems for discussion during the limited time of the medical consultations. The aim of this study was to assess the feasibility of computer-administered individual quality of life measurements in oncology clinics with immediate feedback of results to clinicians and to examine the impact of the information on consultations. The study employed a prospective non-randomized design with pre-test post-test within subjects comparisons and involved three medical oncologists and 28 cancer patients receiving chemotherapy. The intervention consisted of completion of quality of life questionnaires before the consultations and informing clinicians of the results. The main outcome measures were patients' perceptions of the content of baseline and intervention consultations and satisfaction with communication. A qualitative analysis of clinicians' interviews was performed. When clinicians had the quality of life results they enquired more often about daily activities (Z=−2.71, P=0.007), emotional problems (Z=−2.11, P=0.035) and work related issues (Z=−1.89, P=0.058). There was an increase in the number of issues discussed during the intervention consultation (Z=−1.89, P=0.059). Patients were highly satisfied with both consultations. The computer measurement was well accepted by patients who felt that the questionnaires were a useful tool to tell the doctors about their problems. The clinicians perceived that the quality of life data broadened the range of the clinical inquiry and helped them identify issues for discussion. Having symptoms and functional problems expressed quantitatively on a scale was useful for detection of change over time.
British Journal of Cancer (2002) 86, 51–59. DOI: 10.1038/sj/bjc/6600001 www.bjcancer.com
© 2002 The Cancer Research Campaign
doi:10.1038/sj.bjc.6600001
PMCID: PMC2746549  PMID: 11857011
quality of life; individual; cancer; computer; communication
5.  What we talk about when we talk about depression: doctor-patient conversations and treatment decision outcomes 
Background
Efforts to address depression in primary care settings have focused on the introduction of care guidelines emphasising pharmacological treatment. To date, physician adherence remains low. Little is known of the types of information exchange or other negotiations in doctor-patient consultations about depression that influence physician decision making about treatment.
Aim
The study sought to understand conversational influences on physician decision making about treatment for depression.
Design
A secondary analysis of consultation data collected in other studies. Using a maximum variation sampling strategy, 30 transcripts of primary care consultations about distress or depression were selected from datasets collected in three countries. Transcripts were analysed to discover factors associated with prescription of medication.
Method
The study employed two qualitative analysis strategies: a micro-analysis approach, which examines how conversation partners shape the dialogue towards pragmatic goals; and a narrative analysis approach of the problem presentation.
Results
Patients communicated their conceptual representations of distress at the outset of each consultation. Concepts of depression were communicated through the narrative form of the problem presentation. Three types of narratives were identified: those emphasising symptoms, those emphasising life situations, and mixed narratives. Physician decision making regarding medication treatment was strongly associated with the form of the patient’s narrative. Physicians made few efforts to persuade patients to accept biomedical attributions or treatments.
Conclusion
Results of the study provide insight into why adherence to depression guidelines remains low. Data indicate that patient agendas drive the ‘action’ in consultations about depression. Physicians appear to be guided by common-sense decision-making algorithms emphasising patients’ views and preferences.
doi:10.3399/bjgp12X616373
PMCID: PMC3252540  PMID: 22520683
conceptual models; decision making; depression; discourse analysis; doctor-patient relations; narrative analysis; illness representation
6.  Patient Perspectives on Online Health Information and Communication With Doctors: A Qualitative Study of Patients 50 Years Old and Over 
Background
As health care systems around the world shift toward models that emphasize self-care management, there is increasing pressure for patients to obtain health information online. It is critical that patients are able to identify potential problems with using the Internet to diagnose and treat a health issue and that they feel comfortable communicating with their doctor about the health information they acquire from the Internet.
Objective
Our aim was to examine patient-identified (1) problems with using the Internet to identify and treat a health issue, (2) barriers to communication with a doctor about online health information seeking, and (3) facilitators of communication with a doctor about patient searches for health information on the Internet.
Methods
For this qualitative exploratory study, semistructured interviews were conducted with a sample of 56 adults age 50 years old and over. General concerns regarding use of the Internet to diagnose and treat a health issue were examined separately for participants based on whether they had ever discussed health information obtained through the Internet with a doctor. Discussions about barriers to and facilitators of communication about patient searches for health information on the Internet with a doctor were analyzed using thematic analysis.
Results
Six higher-level general concerns emerged: (1) limitations in own ability, (2) credibility/limitations of online information, (3) anxiety, (4) time consumption, (5) conflict, and (6) non-physical harm. The most prevalent concern raised by participants who communicated with a doctor about their online health information seeking related to the credibility or limitations in online information. Participants who had never communicated with a doctor about their online health information seeking most commonly reported concerns about non-physical harm. Four barriers to communication emerged: (1) concerns about embarrassment, (2) concerns that the doctor doesn’t want to hear about it, (3) belief that there is no need to bring it up, and (4) forgetting to bring it up. Facilitators of communication included: (1) having a family member present at doctor visits, (2) doctor-initiated inquiries, and (3) encountering an advertisement that suggested talking with a doctor.
Conclusions
Overall, participants displayed awareness of potential problems related to online health information seeking. Findings from this study point to a set of barriers as well as facilitators of communication about online health information seeking between patients and doctors. This study highlights the need for enhanced patient communication skills, eHealth literacy assessments that are accompanied by targeted resources pointing individuals to high-quality credible online health information, and the need to remind patients of the importance of consulting a medical professional when they use online health resources to diagnose and treat a health issue.
doi:10.2196/jmir.3588
PMCID: PMC4319073  PMID: 25586865
health communication; Internet; online health information seeking; barriers to patient-doctor communication; adults 50 years old and over; qualitative research
7.  Collaborative Care for Older Adults with low back pain by family medicine physicians and doctors of chiropractic (COCOA): study protocol for a randomized controlled trial 
Trials  2013;14:18.
Background
Low back pain is a prevalent and debilitating condition that affects the health and quality of life of older adults. Older people often consult primary care physicians about back pain, with many also receiving concurrent care from complementary and alternative medicine providers, most commonly doctors of chiropractic. However, a collaborative model of treatment coordination between these two provider groups has yet to be tested. The primary aim of the Collaborative Care for Older Adults Clinical Trial is to develop and evaluate the clinical effectiveness and feasibility of a patient-centered, collaborative care model with family medicine physicians and doctors of chiropractic for the treatment of low back pain in older adults.
Methods/design
This pragmatic, pilot randomized controlled trial will enroll 120 participants, age 65 years or older with subacute or chronic low back pain lasting at least one month, from a community-based sample in the Quad-Cities, Iowa/Illinois, USA. Eligible participants are allocated in a 1:1:1 ratio to receive 12 weeks of medical care, concurrent medical and chiropractic care, or collaborative medical and chiropractic care. Primary outcomes are self-rated back pain and disability. Secondary outcomes include general and functional health status, symptom bothersomeness, expectations for treatment effectiveness and improvement, fear avoidance behaviors, depression, anxiety, satisfaction, medication use and health care utilization. Treatment safety and adverse events also are monitored. Participant-rated outcome measures are collected via self-reported questionnaires and computer-assisted telephone interviews at baseline, and at 4, 8, 12, 24, 36 and 52 weeks post-randomization. Provider-rated expectations for treatment effectiveness and participant improvement also are evaluated. Process outcomes are assessed through qualitative interviews with study participants and research clinicians, chart audits of progress notes and content analysis of clinical trial notes.
Discussion
This pragmatic, pilot randomized controlled trial uses a mixed method approach to evaluate the clinical effectiveness, feasibility, and participant and provider perceptions of collaborative care between medical doctors and doctors of chiropractic in the treatment of older adults with low back pain.
Trial registration
This trial registered in ClinicalTrials.gov on 04 March 2011 with the ID number of NCT01312233.
doi:10.1186/1745-6215-14-18
PMCID: PMC3557195  PMID: 23324133
Aged; Chiropractic; Education; Professional; Electronic health records; Family practice; Integrative medicine; Interprofessional relations; Low back pain; Therapy
8.  Home Telehealth for Patients With Chronic Obstructive Pulmonary Disease (COPD) 
Executive Summary
In July 2010, the Medical Advisory Secretariat (MAS) began work on a Chronic Obstructive Pulmonary Disease (COPD) evidentiary framework, an evidence-based review of the literature surrounding treatment strategies for patients with COPD. This project emerged from a request by the Health System Strategy Division of the Ministry of Health and Long-Term Care that MAS provide them with an evidentiary platform on the effectiveness and cost-effectiveness of COPD interventions.
After an initial review of health technology assessments and systematic reviews of COPD literature, and consultation with experts, MAS identified the following topics for analysis: vaccinations (influenza and pneumococcal), smoking cessation, multidisciplinary care, pulmonary rehabilitation, long-term oxygen therapy, noninvasive positive pressure ventilation for acute and chronic respiratory failure, hospital-at-home for acute exacerbations of COPD, and telehealth (including telemonitoring and telephone support). Evidence-based analyses were prepared for each of these topics. For each technology, an economic analysis was also completed where appropriate. In addition, a review of the qualitative literature on patient, caregiver, and provider perspectives on living and dying with COPD was conducted, as were reviews of the qualitative literature on each of the technologies included in these analyses.
The Chronic Obstructive Pulmonary Disease Mega-Analysis series is made up of the following reports, which can be publicly accessed at the MAS website at: http://www.hqontario.ca/en/mas/mas_ohtas_mn.html.
Chronic Obstructive Pulmonary Disease (COPD) Evidentiary Framework
Influenza and Pneumococcal Vaccinations for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Smoking Cessation for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Community-Based Multidisciplinary Care for Patients With Stable Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Pulmonary Rehabilitation for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Long-term Oxygen Therapy for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Noninvasive Positive Pressure Ventilation for Acute Respiratory Failure Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Noninvasive Positive Pressure Ventilation for Chronic Respiratory Failure Patients With Stable Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Hospital-at-Home Programs for Patients With Acute Exacerbations of Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Home Telehealth for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Cost-Effectiveness of Interventions for Chronic Obstructive Pulmonary Disease Using an Ontario Policy Model
Experiences of Living and Dying With COPD: A Systematic Review and Synthesis of the Qualitative Empirical Literature
For more information on the qualitative review, please contact Mita Giacomini at: http://fhs.mcmaster.ca/ceb/faculty_member_giacomini.htm.
For more information on the economic analysis, please visit the PATH website: http://www.path-hta.ca/About-Us/Contact-Us.aspx.
The Toronto Health Economics and Technology Assessment (THETA) collaborative has produced an associated report on patient preference for mechanical ventilation. For more information, please visit the THETA website: http://theta.utoronto.ca/static/contact.
Objective
The objective of this analysis was to conduct an evidence-based assessment of home telehealth technologies for patients with chronic obstructive pulmonary disease (COPD) in order to inform recommendations regarding the access and provision of these services in Ontario. This analysis was one of several analyses undertaken to evaluate interventions for COPD. The perspective of this assessment was that of the Ontario Ministry of Health and Long-Term Care, a provincial payer of medically necessary health care services.
Clinical Need: Condition and Target Population
Canada is facing an increase in chronic respiratory diseases due in part to its aging demographic. The projected increase in COPD will put a strain on health care payers and providers. There is therefore an increasing demand for telehealth services that improve access to health care services while maintaining or improving quality and equality of care. Many telehealth technologies however are in the early stages of development or diffusion and thus require study to define their application and potential harms or benefits. The Medical Advisory Secretariat (MAS) therefore sought to evaluate telehealth technologies for COPD.
Technology
Telemedicine (or telehealth) refers to using advanced information and communication technologies and electronic medical devices to support the delivery of clinical care, professional education, and health-related administrative services.
Generally there are 4 broad functions of home telehealth interventions for COPD:
to monitor vital signs or biological health data (e.g., oxygen saturation),
to monitor symptoms, medication, or other non-biologic endpoints (e.g., exercise adherence),
to provide information (education) and/or other support services (such as reminders to exercise or positive reinforcement), and
to establish a communication link between patient and provider.
These functions often require distinct technologies, although some devices can perform a number of these diverse functions. For the purposes of this review, MAS focused on home telemonitoring and telephone only support technologies.
Telemonitoring (or remote monitoring) refers to the use of medical devices to remotely collect a patient’s vital signs and/or other biologic health data and the transmission of those data to a monitoring station for interpretation by a health care provider.
Telephone only support refers to disease/disorder management support provided by a health care provider to a patient who is at home via telephone or videoconferencing technology in the absence of transmission of patient biologic data.
Research Questions
What is the effectiveness, cost-effectiveness, and safety of home telemonitoring compared with usual care for patients with COPD?
What is the effectiveness, cost-effectiveness, and safety of telephone only support programs compared with usual care for patients with COPD?
Research Methods
Literature Search
Search Strategy
A literature search was performed on November 3, 2010 using OVID MEDLINE, MEDLINE In-Process and Other Non-Indexed Citations, EMBASE, the Cumulative Index to Nursing & Allied Health Literature (CINAHL), the Cochrane Library, and the International Agency for Health Technology Assessment (INAHTA) for studies published from January 1, 2000 until November 3, 2010. Abstracts were reviewed by a single reviewer and, for those studies meeting the eligibility criteria, full-text articles were obtained. Reference lists were also examined for any additional relevant studies not identified through the search. Articles with unknown eligibility were reviewed with a second clinical epidemiologist, and then a group of epidemiologists until consensus was established. The quality of evidence was assessed as high, moderate, low, or very low according to GRADE methodology.
Inclusion Criteria – Question #1
frequent transmission of a patient’s physiological data collected at home and without a health care professional physically present to health care professionals for routine monitoring through the use of a communication technology;
monitoring combined with a coordinated management and feedback system based on transmitted data;
telemonitoring as a key component of the intervention (subjective determination);
usual care as provided by the usual care provider for the control group;
randomized controlled trials (RCTs), controlled clinical trials (CCTs), systematic reviews, and/or meta-analyses;
published between January 1, 2000 and November 3, 2010.
Inclusion Criteria – Question #2
scheduled or frequent contact between patient and a health care professional via telephone or videoconferencing technology in the absence of transmission of patient physiological data;
monitoring combined with a coordinated management and feedback system based on transmitted data;
telephone support as a key component of the intervention (subjective determination);
usual care as provided by the usual care provider for the control group;
RCTs, CCTs, systematic reviews, and/or meta-analyses;
published between January 1, 2000 and November 3, 2010.
Exclusion Criteria
published in a language other than English;
intervention group (and not control) receiving some form of home visits by a medical professional, typically a nurse (i.e., telenursing) beyond initial technology set-up and education, to collect physiological data, or to somehow manage or treat the patient;
not recording patient or health system outcomes (e.g., technical reports testing accuracy, reliability or other development-related outcomes of a device, acceptability/feasibility studies, etc.);
not using an independent control group that received usual care (e.g., studies employing historical or periodic controls).
Outcomes of Interest
hospitalizations (primary outcome)
mortality
emergency department visits
length of stay
quality of life
other […]
Subgroup Analyses (a priori)
length of intervention (primary)
severity of COPD (primary)
Quality of Evidence
The quality of evidence assigned to individual studies was determined using a modified CONSORT Statement Checklist for Randomized Controlled Trials. (1) The CONSORT Statement was adapted to include 3 additional quality measures: the adequacy of control group description, significant differential loss to follow-up between groups, and greater than or equal to 30% study attrition. Individual study quality was defined based on total scores according to the CONSORT Statement checklist: very low (0 to < 40%), low (≥ 40 to < 60%), moderate (≥ 60 to < 80%), and high (≥ 80 to 100%).
The quality of the body of evidence was assessed as high, moderate, low, or very low according to the GRADE Working Group criteria. The following definitions of quality were used in grading the quality of the evidence:
Summary of Findings
Six publications, representing 5 independent trials, met the eligibility criteria for Research Question #1. Three trials were RCTs reported across 4 publications, whereby patients were randomized to home telemonitoring or usual care, and 2 trials were CCTs, whereby patients or health care centers were nonrandomly assigned to intervention or usual care.
A total of 310 participants were studied across the 5 included trials. The mean age of study participants in the included trials ranged from 61.2 to 74.5 years for the intervention group and 61.1 to 74.5 years for the usual care group. The percentage of men ranged from 40% to 64% in the intervention group and 46% to 72% in the control group.
All 5 trials were performed in a moderate to severe COPD patient population. Three trials initiated the intervention following discharge from hospital. One trial initiated the intervention following a pulmonary rehabilitation program. The final trial initiated the intervention during management of patients at an outpatient clinic.
Four of the 5 trials included oxygen saturation (i.e., pulse oximetry) as one of the biological patient parameters being monitored. Additional parameters monitored included forced expiratory volume in one second, peak expiratory flow, and temperature.
There was considerable clinical heterogeneity between trials in study design, methods, and intervention/control. In relation to the telemonitoring intervention, 3 of the 5 included studies used an electronic health hub that performed multiple functions beyond the monitoring of biological parameters. One study used only a pulse oximeter device alone with modem capabilities. Finally, in 1 study, patients measured and then forwarded biological data to a nurse during a televideo consultation. Usual care varied considerably between studies.
Only one trial met the eligibility criteria for Research Question #2. The included trial was an RCT that randomized 60 patients to nurse telephone follow-up or usual care (no telephone follow-up). Participants were recruited from the medical department of an acute-care hospital in Hong Kong and began receiving follow-up after discharge from the hospital with a diagnosis of COPD (no severity restriction). The intervention itself consisted of only two 10-to 20-minute telephone calls, once between days 3 to 7 and once between days 14 to 20, involving a structured, individualized educational and supportive programme led by a nurse that focused on 3 components: assessment, management options, and evaluation.
Regarding Research Question #1:
Low to very low quality evidence (according to GRADE) finds non-significant effects or conflicting effects (of significant or non-significant benefit) for all outcomes examined when comparing home telemonitoring to usual care.
There is a trend towards significant increase in time free of hospitalization and use of other health care services with home telemonitoring, but these findings need to be confirmed further in randomized trials of high quality.
There is severe clinical heterogeneity between studies that limits summary conclusions.
The economic impact of home telemonitoring is uncertain and requires further study.
Home telemonitoring is largely dependent on local information technologies, infrastructure, and personnel, and thus the generalizability of external findings may be low. Jurisdictions wishing to replicate home telemonitoring interventions should likely test those interventions within their jurisdictional framework before adoption, or should focus on home-grown interventions that are subjected to appropriate evaluation and proven effective.
Regarding Research Question #2:
Low quality evidence finds significant benefit in favour of telephone-only support for self-efficacy and emergency department visits when compared to usual care, but non-significant results for hospitalizations and hospital length of stay.
There are very serious issues with the generalizability of the evidence and thus additional research is required.
PMCID: PMC3384362  PMID: 23074421
9.  Academic doctors' views of complementary and alternative medicine (CAM) and its role within the NHS: an exploratory qualitative study 
Background
There has been a marked increase in the use of complementary and alternative medicine (CAM) in the UK population in recent years. Surveys of doctors' perspectives on CAM have identified a variety of views and potential information needs. While these are useful for describing the proportions of doctors who hold particular attitudes towards CAM, they are less helpful for understanding why. In addition, while the views of non-academic doctors have begun to be studied, the perspective and rationales of academic doctors remains under-researched. It seems important to investigate the views of those with a research-orientation, given the emphasis on the need for more scientific evidence in recent debates on CAM.
Methods
This exploratory study used qualitative methods to explore academic doctors' views of CAM and the rationales they provided for their views. A purposeful sampling strategy was used to identify doctors with a dual clinical and academic role in the Bristol area, with an anticipated variety of views on CAM. Semi-structured interviews were conducted with nine doctors. The data were analysed thematically, drawing on the Framework Approach.
Results
The doctors expressed a spectrum of views on CAM, falling into three broad groups: the 'enthusiasts', the 'sceptics' and the 'undecided'. Scepticism or uncertainty about the value of CAM was prominent, except among those practising a form of CAM. A variety of rationales underpinned their perspectives on CAM, a key recurring rationale being their perspective on the scientific evidence base. The main themes arising included: the role of doctors' professional experiences of conventional medicine and CAM in shaping their attitudes towards CAM, doctor-patient communication about CAM and patient disclosure, whether there is a need for training and education in CAM for doctors, a hierarchy of acceptability of CAM and the nature of evidence; and the role of CAM within the NHS.
Conclusion
Despite the caution or scepticism towards CAM expressed by doctors in this study, more open doctor-patient communication about CAM may enable doctors' potential concerns about CAM to be addressed, or at least enhance their knowledge of what treatments or therapies their patients are using. Offering CAM to patients may serve to enhance patients' treatment choices and even increase doctors' fulfilment in their practice. However, given the recurring concerns about lack of scientific evidence expressed by the doctors in this study, perceptions of the evidence base may remain a significant barrier to greater integration of CAM within the NHS.
doi:10.1186/1472-6882-7-17
PMCID: PMC1896178  PMID: 17537248
10.  Experiences of Living and Dying With COPD 
Executive Summary
In July 2010, the Medical Advisory Secretariat (MAS) began work on a Chronic Obstructive Pulmonary Disease (COPD) evidentiary framework, an evidence-based review of the literature surrounding treatment strategies for patients with COPD. This project emerged from a request by the Health System Strategy Division of the Ministry of Health and Long-Term Care that MAS provide them with an evidentiary platform on the effectiveness and cost-effectiveness of COPD interventions.
After an initial review of health technology assessments and systematic reviews of COPD literature, and consultation with experts, MAS identified the following topics for analysis: vaccinations (influenza and pneumococcal), smoking cessation, multidisciplinary care, pulmonary rehabilitation, long-term oxygen therapy, noninvasive positive pressure ventilation for acute and chronic respiratory failure, hospital-at-home for acute exacerbations of COPD, and telehealth (including telemonitoring and telephone support). Evidence-based analyses were prepared for each of these topics. For each technology, an economic analysis was also completed where appropriate. In addition, a review of the qualitative literature on patient, caregiver, and provider perspectives on living and dying with COPD was conducted, as were reviews of the qualitative literature on each of the technologies included in these analyses.
The Chronic Obstructive Pulmonary Disease Mega-Analysis series is made up of the following reports, which can be publicly accessed at the MAS website at: http://www.hqontario.ca/en/mas/mas_ohtas_mn.html.
Chronic Obstructive Pulmonary Disease (COPD) Evidentiary Framework
Influenza and Pneumococcal Vaccinations for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Smoking Cessation for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Community-Based Multidisciplinary Care for Patients With Stable Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Pulmonary Rehabilitation for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Long-Term Oxygen Therapy for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Noninvasive Positive Pressure Ventilation for Acute Respiratory Failure Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Noninvasive Positive Pressure Ventilation for Chronic Respiratory Failure Patients With Stable Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Hospital-at-Home Programs for Patients With Acute Exacerbations of Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Home Telehealth for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Cost-Effectiveness of Interventions for Chronic Obstructive Pulmonary Disease Using an Ontario Policy Model
Experiences of Living and Dying With COPD: A Systematic Review and Synthesis of the Qualitative Empirical Literature
For more information on the qualitative review, please contact Mita Giacomini at: http://fhs.mcmaster.ca/ceb/faculty_member_giacomini.htm.
For more information on the economic analysis, please visit the PATH website: http://www.path-hta.ca/About-Us/Contact-Us.aspx.
The Toronto Health Economics and Technology Assessment (THETA) collaborative has produced an associated report on patient preference for mechanical ventilation. For more information, please visit the THETA website: http://theta.utoronto.ca/static/contact.
Objective of Analysis
The objective of this analysis was to review empirical qualitative research on the experiences of patients with chronic obstructive pulmonary disease (COPD), informal caregivers (“carers”), and health care providers—from the point of diagnosis, through daily living and exacerbation episodes, to the end of life.
Clinical Need and Target Population
Qualitative empirical studies (from social sciences, clinical, and related fields) can offer important information about how patients experience their condition. This exploration of the qualitative literature offers insights into patients’ perspectives on COPD, their needs, and how interventions might affect their experiences. The experiences of caregivers are also explored.
Research Question
What do patients with COPD, their informal caregivers (“carers”), and health care providers experience over the course of COPD?
Research Methods
Literature Search
Search Strategy
Literature searches for studies published from January 1, 2000, to November 2010 were performed on November 29, 2010, using OVID MEDLINE; on November 26, 2010, using ISI Web of Science; and on November 28, 2010, using EBSCO Cumulative Index to Nursing and Allied Health Literature (CINAHL). Titles and abstracts were reviewed by a single reviewer and, for those studies meeting the eligibility criteria, full-text articles were obtained. One additional report, highly relevant to the synthesis, appeared in early 2011 during the drafting of this analysis and was included post hoc.
Inclusion Criteria
English-language full reports
studies published between January 1, 2000, and November 2010
primary qualitative empirical research (using any descriptive or interpretive qualitative methodology, including the qualitative component of mixed-methods studies) and secondary syntheses of primary qualitative empirical research
studies addressing any aspect of the experiences of living or dying with COPD from the perspective of persons at risk, patients, health care providers, or informal carers; studies addressing multiple conditions were included if COPD was addressed explicitly
Exclusion Criteria
studies addressing topics other than the experiences of living or dying with COPD from the perspective of persons at risk, patients, health care providers, or informal carers
studies labelled “qualitative” but not using a qualitative descriptive or interpretive methodology (e.g., case studies, experiments, or observational analysis using qualitative categorical variables)
quantitative research (i.e., using statistical hypothesis testing, using primarily quantitative data or analyses, or expressing results in quantitative or statistical terms)
studies that did not pose an empirical research objective or question, or involve the primary or secondary analysis of empirical data
Outcomes of Interest
qualitative descriptions and interpretations (narrative or theoretical) of personal and social experiences of COPD
Summary of Findings
Experiences at Diagnosis
Patients typically seek initial treatment for an acute episode rather than for chronic early symptoms of COPD.
Many patients initially misunderstand terms such as COPD, chronic obstructive pulmonary disease, or exacerbation.
Patients may not realize that COPD is incurable and fatal; some physicians themselves do not consider early COPD to be a fatal disease.
Smokers may not readily understand or agree with the idea that smoking caused or worsens their COPD. Those who believe there is a causal link may feel regret or shame.
Experiences of Living Day to Day
COPD patients experience alternating good days and bad days. A roller-coaster pattern of ups and downs becomes apparent, and COPD becomes a way of life.
Patients use many means (social, psychological, medical, organizational) to control what they can, and to cope with what they cannot. Economic hardship, comorbidities, language barriers, and low health literacy can make coping more difficult.
Increasing vulnerability and unpredictable setbacks make patients dependent on others for practical assistance, but functional limitations, institutional living or self-consciousness can isolate patients from the people they need.
For smokers, medical advice to quit can conflict with increased desire to smoke as a coping strategy.
Many of the factors that isolate COPD patients from social contact also isolate them from health care.
Experiences of Exacerbations
Patients may not always attribute repeated exacerbations to advancing disease, instead seeing them as temporary setbacks caused by activities, environmental factors, faltering self-management, or infection.
Lack of confidence in community-based services leads some patients to seek hospital admission, but patients also feel vulnerable when hospitalized. They may feel dependent on others for care or traumatized by hospital care routines.
Upon hospital discharge following an exacerbation, patients may face new levels of uncertainty about their illness, prognosis, care providers, and supports.
Experiences of the End of Life
Patients tend to be poorly informed about the long-term prognosis of COPD and what to expect toward the end of life; this lack of understanding impairs quality of life as the disease progresses.
As the end of life approaches, COPD patients face the usual challenges of daily living, but in a context of increasing exacerbations and deepening dependency. Activities and mobility decrease, and life may become confined.
Some clinicians have difficulty identifying the beginning of “the end of life,” given the unpredictable course of COPD. Long-term physician-patient relationships, familiarity and understanding, trust, good communication skills, sensitivity, and secure discussion settings can help facilitate end-of-life discussions.
Divergent meanings and goals of palliative care in COPD lead to confusion about whether such services are the responsibility of home care, primary care, specialty care, or even critical care. Palliative end-of-life care may not be anticipated prior to referral for such care. A palliative care referral can convey the demoralizing message that providers have “given up.”
Experiences of Carers
Carers’ challenges often echo patients’ challenges, and include anxiety, uncertainty about the future, helplessness, powerlessness, depression, difficulties maintaining employment, loss of mobility and freedoms, strained relationships, and growing social isolation.
Carers feel pressured by their many roles, struggling to maintain patience when they feel overwhelmed, and often feeling guilty about not doing enough.
Carers often face their own health problems and may have difficulty sustaining employment.
Synthesis: A Disease Trajectory Reflecting Patient Experiences
The flux of needs in COPD calls for service continuity and flexibility to allow both health care providers and patients to respond to the unpredictable yet increasing demands of the disease over time.
PMCID: PMC3384365  PMID: 23074423
11.  Psychiatric morbidity and its recognition by doctors in patients with cancer 
British Journal of Cancer  2001;84(8):1011-1015.
Psychiatric morbidity in patients with cancer is high and without appropriate treatment unremitting. We assessed the ability of 143 doctors to establish the psychological status of 2297 patients during outpatient consultations in 34 cancer centres and hospitals in the UK. Prior to seeing the doctor, consenting patients completed a short self-report questionnaire (GHQ12), designed for the psychological screening of large populations. At the end of the consultation, doctors completed visual analogue scales rating patients' distress. 837/2297 (36.4%) patients had GHQ scores suggestive of psychiatric morbidity. The doctors' sensitivity (true positive rate) was 28.87% (SD 25.29), specificity (true negative rate) 84.79% (SD 17.44). The misclassification rate was 34.7% (SD 13.79) meaning that for 797 patients the wrong assessment was probably made. These data show that much of the probable psychiatric morbidity experienced by patients with cancer goes unrecognized and therefore untreated. Doctors need communication skills training to elicit problems during consultations. Appropriate referrals to psychological services are necessary when patients requiring help are identified and ought to be an integral part of cancer care. © 2001 Cancer Research Campaign http://www.bjcancer.com
doi:10.1054/bjoc.2001.1724
PMCID: PMC2363864  PMID: 11308246
detection of psychiatric morbidity; communication
12.  Shared care: a qualitative study of GPs' and hospital doctors' views on prescribing specialist medicines. 
BACKGROUND: Shared care schemes have mainly centred on chronic diseases, such as asthma and diabetes. However, with increasing government emphasis on primary and secondary care integration and the effects of budget restraints, general practitioners (GPs) have been asked to take on the prescribing of specialist medicines. AIM: To elicit the views and experiences of GPs and hospital doctors about existing arrangements for shared care applied to the prescribing of specialist medicines. To identify a set of quality indicators for prescribing specialist medicines at the interface between primary and secondary care. DESIGN OF STUDY: A qualitative study based on semi-structured interviews. SETTING: Forty-eight GPs and 13 hospital doctors in the former South Thames region. METHOD: The interviews focused on how far experiences with shared care compare with the arrangements currently in place for prescribing specialist medicines and identified the barriers to facilitators of effective shared care. RESULTS: A number of key themes were identified and these formed the basis for eight quality indicators relating to the prescribing of specialist medicines where treatment is shared between primary and secondary care. The themes centred around issues of clinical responsibility, 'cost-shifting', availability of medicines, GP satisfaction, and the nature of the prescribing relationship. CONCLUSION: Overall, GPs appeared dissatisfied with arrangements for prescribing specialist medicines, while hospital doctors were generally satisfied. The quality indicators will form the basis of a more extensive quantitative survey of GPs' perceptions of the arrangements for prescribing specialist medicines.
PMCID: PMC1313949  PMID: 11255899
13.  How Doctors View and Use Social Media: A National Survey 
Background
Doctors are uncertain of their ethical and legal obligations when communicating with patients online. Professional guidelines for patient-doctor interaction online have been written with limited quantitative data about doctors’ current usage and attitudes toward the medium. Further research into these trends will help to inform more focused policy and guidelines for doctors communicating with patients online.
Objective
The intent of the study was to provide the first national profile of Australian doctors’ attitudes toward and use of online social media.
Methods
The study involved a quantitative, cross-sectional online survey of Australian doctors using a random sample from a large representative database.
Results
Of the 1500 doctors approached, 187 participated (12.47%). Most participants used social media privately, with only one-quarter not using any social media websites at all (48/187, 25.7%). One in five participants (30/155, 19.4%) had received a “friend request” from a patient. There was limited use of online communication in clinical practice: only 30.5% (57/187) had communicated with a patient through email and fewer than half (89/185, 48.1%) could offer their patients electronic forms of information if that were the patients’ preference. Three in five participants (110/181, 60.8%) reported not being uncomfortable about interacting with patients who had accessed personal information about them online, prior to the consultation. Most of the participants (119/181, 65.8%) were hesitant to immerse themselves more fully in social media and online communication due to worries about public access and legal concerns.
Conclusions
Doctors have different practices and views regarding whether or how to communicate appropriately with patients on the Internet, despite online and social media becoming an increasingly common feature of clinical practice. Additional training would assist doctors in protecting their personal information online, integrating online communication in patient care, and guidance on the best approach in ethically difficult online situations.
doi:10.2196/jmir.3589
PMCID: PMC4275505  PMID: 25470407
social media; Internet; professional practice; health communication; ethics; health policy; patient-physician relations
14.  Effective improvement of doctor–patient communication: a randomised controlled trial 
Background
Doctor–patient communication is an essential component of general practice. Improvement of GPs' communication patterns is an important target of training programmes. Available studies have so far failed to provide conclusive evidence of the effectiveness of educational interventions to improve doctor–patient communication.
Aim
To examine the effectiveness of a learner-centred approach that focuses on actual needs, to improve GPs' communication with patients.
Design of study
Randomised controlled trial.
Setting
One hundred volunteer GPs in the Netherlands.
Method
The intervention identified individual GPs' deficiencies in communication skills by observing authentic consultations in their own surgery. This performance assessment was followed by structured activities in small group meetings, aimed at remedying the identified shortcomings. Outcomes were measured using videotaped consultations in the GPs' own surgery before and after the intervention. Communication skills were rated using the MAAS-Global, a validated checklist.
Results
The scores in the intervention group demonstrated a significant improvement compared with those of the control group (95% confidence interval = 0.04 to 0.75). The effect size was moderate to large (d-value = 0.66). The level of participation significantly contributed to the effectiveness. Largest improvement was found on patient-centred communication skills.
Conclusion
The approach of structured individual improvement activities based on performance assessment is more effective in improving communication skills than current educational activities.
PMCID: PMC1874521  PMID: 16882375
communication; continuing medical education; physician–patient relations; task performance; analysis
15.  Patient Adherence to Tuberculosis Treatment: A Systematic Review of Qualitative Research 
PLoS Medicine  2007;4(7):e238.
Background
Tuberculosis (TB) is a major contributor to the global burden of disease and has received considerable attention in recent years, particularly in low- and middle-income countries where it is closely associated with HIV/AIDS. Poor adherence to treatment is common despite various interventions aimed at improving treatment completion. Lack of a comprehensive and holistic understanding of barriers to and facilitators of, treatment adherence is currently a major obstacle to finding effective solutions. The aim of this systematic review of qualitative studies was to understand the factors considered important by patients, caregivers and health care providers in contributing to TB medication adherence.
Methods and Findings
We searched 19 electronic databases (1966–February 2005) for qualitative studies on patients', caregivers', or health care providers' perceptions of adherence to preventive or curative TB treatment with the free text terms “Tuberculosis AND (adherence OR compliance OR concordance)”. We supplemented our search with citation searches and by consulting experts. For included studies, study quality was assessed using a predetermined checklist and data were extracted independently onto a standard form. We then followed Noblit and Hare's method of meta-ethnography to synthesize the findings, using both reciprocal translation and line-of-argument synthesis. We screened 7,814 citations and selected 44 articles that met the prespecified inclusion criteria. The synthesis offers an overview of qualitative evidence derived from these multiple international studies. We identified eight major themes across the studies: organisation of treatment and care; interpretations of illness and wellness; the financial burden of treatment; knowledge, attitudes, and beliefs about treatment; law and immigration; personal characteristics and adherence behaviour; side effects; and family, community, and household support. Our interpretation of the themes across all studies produced a line-of-argument synthesis describing how four major factors interact to affect adherence to TB treatment: structural factors, including poverty and gender discrimination; the social context; health service factors; and personal factors. The findings of this study are limited by the quality and foci of the included studies.
Conclusions
Adherence to the long course of TB treatment is a complex, dynamic phenomenon with a wide range of factors impacting on treatment-taking behaviour. Patients' adherence to their medication regimens was influenced by the interaction of a number of these factors. The findings of our review could help inform the development of patient-centred interventions and of interventions to address structural barriers to treatment adherence.
From a systematic review of qualitative research, Munro and coauthors found that a range of interacting factors can lead to patients deciding not to complete their course of tuberculosis treatment.
Editors' Summary
Background.
Every year nearly nine million people develop tuberculosis—a contagious infection, usually of the lungs—and about two million people die from the disease. Tuberculosis is caused by Mycobacterium tuberculosis, bacteria that are spread in airborne droplets when people with active tuberculosis sneeze or cough. Tuberculosis can be cured by taking several strong antibiotics daily for at least six months but many patients fail to complete this treatment because the drugs have unpleasant side-effects and the treatment is complicated. In addition, people often feel better soon after starting treatment so they stop taking their tablets before all the bacteria in their body are dead. Poor treatment adherence (poor compliance) means that people remain infectious for longer and are more likely to relapse and die. It also contributes to the emergence of drug-resistant tuberculosis. To help people complete their treatment, the World Health Organization recommends a strategy known as DOTS (directly observed treatment, short course). As part of this strategy, a health worker or a tuberculosis treatment supporter—a person nominated by the health worker and the patient—watches the patient take his/her antibiotics.
Why Was This Study Done?
Although DOTS has contributed to improved tuberculosis control, better patient compliance is needed to halt the global tuberculosis epidemic. Treatment adherence is a complex behavioral issue and improving treatment outcomes for tuberculosis (and for other diseases) requires a full understanding of the factors that prevent people taking medicines correctly and those that help them complete their treatment. In this study, the researchers have done a systematic review (a study in which the medical literature is surveyed and appraised using defined methods to reach a consensus view on a specific question) of qualitative studies that asked patients, carers, and health workers which factors contributed to adherence to tuberculosis treatment. Qualitative studies collect non-quantitative data so, for example, a qualitative study on tuberculosis treatment might ask people how the treatment made them feel whereas a quantitative study might count bacteria in patient samples.
What Did the Researchers Do and Find?
The researchers searched electronic databases and reference lists for qualitative studies on adherence to tuberculosis treatments and also consulted experts on tuberculosis treatment. They carefully read the 44 published papers that met their predefined inclusion criteria and then used a method called “meta-ethnography” to compare the factors (themes) associated with good or bad adherence in the different studies and to synthesize (reach) a consensus view of which factors influence adherence to tuberculosis treatment. The researchers identified eight major factors associated with adherence to treatment. These included: health service factors such as the organization of treatment and care; social context (family, community and household influences); and the financial burden of treatment. Finally, the researchers interpreted the themes that emerged from the studies to build a simple model that proposes that adherence to tuberculosis treatment is influenced by four interacting sets of factors—structural factors (including poverty and gender discrimination), social context factors, health service factors, and personal factors (including attitudes towards treatment and illness).
What Do These Findings Mean?
The findings of this systematic review of qualitative research on patient adherence to tuberculosis treatment are inevitably limited by the quality and scope of the original research. Consequently, further studies into patients' understanding of tuberculosis and its treatment are needed. Nevertheless, the findings and the model proposed by the researchers indicate that patients often take their tuberculosis medications under very difficult conditions and that they cannot control many of the factors that prevent them taking their drugs. So, although current efforts to improve adherence to tuberculosis treatments emphasize instilling a willingness to take their medications into patients, this systematic review suggests that more must be done to address how factors such as poverty and gender affect treatment adherence and to tailor support systems to patients' needs. Most importantly, it indicates that future interventions should involve patients more in the decisions made about their treatment.
Additional Information.
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.0040238.
MedlinePlus has an encyclopedia page on tuberculosis (in English and Spanish)
See the US National Institute of Allergy and Infectious Disease fact sheet on tuberculosis
US Centers for Disease Control and Prevention provide a variety of fact sheets and other information resources on tuberculosis
World Health Organization has produced the 2007 Global Tuberculosis Control report (in English with key findings in French and Spanish), information on DOTS (in English, Spanish, French, Russian, Arabic and Chinese), and A Guide for Tuberculosis Treatment Supporters
See the brief guide to systematic reviews, published by the British Medical Journal
doi:10.1371/journal.pmed.0040238
PMCID: PMC1925126  PMID: 17676945
16.  Doctor–patient communication in a Southeast Asian setting: the conflict between ideal and reality 
Doctor–patient communication has been extensively studied in non-Western contexts and in relation to patients’ cultural and education backgrounds. This study explores the perceived ideal communication style for doctor–patient consultations and the reality of actual practice in a Southeast Asian context. We conducted the study in a teaching hospital in Indonesia, using a qualitative and a quantitative design. In-depth interviews were conducted with ten internal medicine specialists, ten internal medicine residents, 16 patients in two groups based on education level and ten most senior medical students. The contributions of doctors and patients to the communication during consultations were observed and rated quantitatively by thirty internal medicine residents, 393 patients with different educational backgrounds and ten senior medical students. The ‘informed and shared decision making’ is the central observation in this quantitative study. The results of the interviews showed that Southeast Asian stakeholders are in favor of a partnership style of communication and revealed barriers to achieving this: doctors and patients are not prepared for a participatory style and high patient load due to an inefficient health care system does not allow sufficient time for this type of communication. The results of the quantitative study showed a sharp contrast between observed and ideal communication styles. A paternalistic style seems to prevail, irrespective of patients’ educational background. We found a sharp conflict between ideal and reality concerning doctor–patient communication in a Southeast Asian context. Further studies should examine ways to change the prevailing communication style in the desired direction.
doi:10.1007/s10459-010-9242-7
PMCID: PMC3074074  PMID: 20658353
Doctor–patient communication; Intercultural communication; Patients’ educational background; The continuum of partnership style
17.  Touch in primary care consultations: qualitative investigation of doctors’ and patients’ perceptions 
The British Journal of General Practice  2013;63(609):e283-e290.
Background
Good communication skills are integral to successful doctor–patient relationships. Communication may be verbal or non-verbal, and touch is a significant component, which has received little attention in the primary care literature. Touch may be procedural (part of a clinical task) or expressive (contact unrelated to a procedure/examination).
Aim
To explore GPs’ and patients’ experiences of using touch in consultations.
Design and setting
Qualitative study in urban and semi-rural areas of north-west England.
Method
Participating GPs recruited registered patients with whom they felt they had an ongoing relationship. Data were collected by semi-structured interviews and subjected to constant comparative qualitative analysis.
Results
All participants described the importance of verbal and non-verbal communication in developing relationships. Expressive touch was suggested to improve communication quality by most GPs and all patients. GPs reported a lower threshold for using touch with older patients or those who were bereaved, and with patients of the same sex as themselves. All patient responders felt touch on the hand or forearm was appropriate. GPs described limits to using touch, with some responders rarely using anything other than procedural touch. In contrast, most patient responders believed expressive touch was acceptable, especially in situations of distress. All GP responders feared misinterpretation in their use of touch, but patients were keen that these concerns should not prevent doctors using expressive touch in consultations.
Conclusion
Expressive touch improves interactions between GPs and patients. Increased educational emphasis on the conscious use of expressive touch would enhance clinical communication and, hence, perhaps patient wellbeing and care.
doi:10.3399/bjgp13X665251
PMCID: PMC3609476  PMID: 23540485
communication skills; consultations; non-verbal communication; primary health care; qualitative research; touch
18.  Courteous but not curious: how doctors' politeness masks their existential neglect. A qualitative study of video-recorded patient consultations 
Journal of Medical Ethics  2011;37(11):650-654.
Objective
To study how doctors care for their patients, both medically and as fellow humans, through observing their conduct in patient–doctor encounters.
Design
Qualitative study in which 101 videotaped consultations were observed and analysed using a Grounded Theory approach, generating explanatory categories through a hermeneutical analysis of the taped consultations.
Setting
A 500-bed general teaching hospital in Norway.
Participants
71 doctors working in clinical non-psychiatric departments and their patients.
Results
The doctors were concerned about their patients' health and how their medical knowledge could be of service. This medical focus often over-rode other important aspects of the consultations, especially existential elements. The doctors actively directed the focus away from their patients' existential concerns onto medical facts and rarely addressed the personal aspects of a patient's condition, treating them in a biomechanical manner. At the same time, however, the doctors attended to their patients with courteousness, displaying a polite and friendly attitude and emphasising the relationship between them.
Conclusions
The study suggests that the main failing of patient–doctor encounters is not a lack of courteous manners, but the moral offence patients experience when existential concerns are ignored. Improving doctors' social and communication skills cannot resolve this moral problem, which appears to be intrinsically bound to modern medical practice. Acknowledging this moral offence would, however, be the first step towards minimising the effects thereof.
doi:10.1136/jme.2010.041988
PMCID: PMC3198010  PMID: 21610269
Applied and professional ethics; philosophy of medicine; professional—professional relationship
19.  The Chinese-version of the CARE Measure reliably differentiates between doctors in primary care: a cross-sectional study in Hong Kong 
BMC Family Practice  2011;12:43.
Background
The Consultation and Relational Empathy (CARE) Measure is a widely used patient-rated experience measure which has recently been translated into Chinese and has undergone preliminary qualitative and quantitative validation. The objective of this study was to determine the reliability of the Chinese-version of the CARE Measure in reliably differentiating between doctors in a primary care setting in Hong Kong
Methods
Data were collected from 984 primary care patients attending 20 doctors with differing levels of training in family medicine in 5 public clinics in Hong Kong. The acceptability of the Chinese-CARE measure to patients was assessed. The reliability of the measure in discriminating effectively between doctors was analysed by Generalisability-theory (G-Theory)
Results
The items in the Chinese-CARE measure were regarded as important by patients and there were few 'not applicable' responses. The measure showed high internal reliability (coefficient 0.95) and effectively differentiated between doctors with only 15-20 patient ratings per doctor (inter-rater reliability > 0.8). Doctors' mean CARE measure scores varied widely, ranging from 24.1 to 45.9 (maximum possible score 50) with a mean of 34.6. CARE Measure scores were positively correlated with level of training in family medicine (Spearman's rho 0.493, p < 0.05).
Conclusion
These data demonstrate the acceptability, feasibility and reliability of using the Chinese-CARE Measure in primary care in Hong Kong to differentiate between doctors interpersonal competencies. Training in family medicine appears to enhance these key interpersonal skills.
doi:10.1186/1471-2296-12-43
PMCID: PMC3123195  PMID: 21631927
CARE Measure; reliability; consultations; empathy; Hong Kong China; primary care
20.  “Patient-Time,” “Doctor-Time,” and “Institution-Time”: Perceptions and Definitions of Time Among Doctors Who Become Patients 
Patient education and counseling  2006;66(2):147-155.
Objective
To examine views and experiences of conflicts concerning time in healthcare, from the perspective of physicians who have become patients.
Methods
We conducted two in-depth semi-structured two-hour interviews concerning experiences of being health care workers, and becoming a patient, with each of 50 doctors who had serious illnesses.
Results
These doctor-patients often came to realize as they had not before how patients experience time differently, and how “patient-time,” “doctor-time,” and “institution-time” exist and can conflict. Differences arose in both long and short term, regarding historical time (prior eras/decades in medicine), prognosis (months/years), scheduling delays (days/weeks), daily medical events and tasks (hours), and periods in waiting rooms (minutes/hours). Definitions of periods of time (e.g., “fast,” “slow,” “plenty,” and “soon”) also varied widely, and could clash. Professional socialization had heretofore impeded awareness of these differences. Physicians tried to address these conflicts in several ways (e.g., trying to provide test results promptly), though full resolution remained difficult.
Conclusions
Doctors who became patients often now realized how physicians and patients differ in subjective experiences of time. Medical education and research have not adequately considered these issues, which can affect patient satisfaction, doctor-patient relationships and communication, and care.
Practice Implications
Physicians need to be more sensitive to how their definitions, perceptions, and experiences concerning time can differ from those of patients.
doi:10.1016/j.pec.2006.10.005
PMCID: PMC2950119  PMID: 17125956
Doctor-patient relationships; doctor-patient communication; medical education; patient satisfaction; medical ethics; medical socialization; health care delivery
21.  Noninvasive Positive Pressure Ventilation for Acute Respiratory Failure Patients With Chronic Obstructive Pulmonary Disease (COPD) 
Executive Summary
In July 2010, the Medical Advisory Secretariat (MAS) began work on a Chronic Obstructive Pulmonary Disease (COPD) evidentiary framework, an evidence-based review of the literature surrounding treatment strategies for patients with COPD. This project emerged from a request by the Health System Strategy Division of the Ministry of Health and Long-Term Care that MAS provide them with an evidentiary platform on the effectiveness and cost-effectiveness of COPD interventions.
After an initial review of health technology assessments and systematic reviews of COPD literature, and consultation with experts, MAS identified the following topics for analysis: vaccinations (influenza and pneumococcal), smoking cessation, multidisciplinary care, pulmonary rehabilitation, long-term oxygen therapy, noninvasive positive pressure ventilation for acute and chronic respiratory failure, hospital-at-home for acute exacerbations of COPD, and telehealth (including telemonitoring and telephone support). Evidence-based analyses were prepared for each of these topics. For each technology, an economic analysis was also completed where appropriate. In addition, a review of the qualitative literature on patient, caregiver, and provider perspectives on living and dying with COPD was conducted, as were reviews of the qualitative literature on each of the technologies included in these analyses.
The Chronic Obstructive Pulmonary Disease Mega-Analysis series is made up of the following reports, which can be publicly accessed at the MAS website at: http://www.hqontario.ca/en/mas/mas_ohtas_mn.html.
Chronic Obstructive Pulmonary Disease (COPD) Evidentiary Framework
Influenza and Pneumococcal Vaccinations for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Smoking Cessation for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Community-Based Multidisciplinary Care for Patients With Stable Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Pulmonary Rehabilitation for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Long-term Oxygen Therapy for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Noninvasive Positive Pressure Ventilation for Acute Respiratory Failure Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Noninvasive Positive Pressure Ventilation for Chronic Respiratory Failure Patients With Stable Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Hospital-at-Home Programs for Patients With Acute Exacerbations of Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Home Telehealth for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Cost-Effectiveness of Interventions for Chronic Obstructive Pulmonary Disease Using an Ontario Policy Model
Experiences of Living and Dying With COPD: A Systematic Review and Synthesis of the Qualitative Empirical Literature
For more information on the qualitative review, please contact Mita Giacomini at: http://fhs.mcmaster.ca/ceb/faculty_member_giacomini.htm.
For more information on the economic analysis, please visit the PATH website: http://www.path-hta.ca/About-Us/Contact-Us.aspx.
The Toronto Health Economics and Technology Assessment (THETA) collaborative has produced an associated report on patient preference for mechanical ventilation. For more information, please visit the THETA website: http://theta.utoronto.ca/static/contact.
Objective
The objective of this evidence-based analysis was to examine the effectiveness, safety, and cost-effectiveness of noninvasive positive pressure ventilation (NPPV) in the following patient populations: patients with acute respiratory failure (ARF) due to acute exacerbations of chronic obstructive pulmonary disease (COPD); weaning of COPD patients from invasive mechanical ventilation (IMV); and prevention of or treatment of recurrent respiratory failure in COPD patients after extubation from IMV.
Clinical Need and Target Population
Acute Hypercapnic Respiratory Failure
Respiratory failure occurs when the respiratory system cannot oxygenate the blood and/or remove carbon dioxide from the blood. It can be either acute or chronic and is classified as either hypoxemic (type I) or hypercapnic (type II) respiratory failure. Acute hypercapnic respiratory failure frequently occurs in COPD patients experiencing acute exacerbations of COPD, so this is the focus of this evidence-based analysis. Hypercapnic respiratory failure occurs due to a decrease in the drive to breathe, typically due to increased work to breathe in COPD patients.
Technology
There are several treatment options for ARF. Usual medical care (UMC) attempts to facilitate adequate oxygenation and treat the cause of the exacerbation, and typically consists of supplemental oxygen, and a variety of medications such as bronchodilators, corticosteroids, and antibiotics. The failure rate of UMC is high and has been estimated to occur in 10% to 50% of cases.
The alternative is mechanical ventilation, either invasive or noninvasive. Invasive mechanical ventilation involves sedating the patient, creating an artificial airway through endotracheal intubation, and attaching the patient to a ventilator. While this provides airway protection and direct access to drain sputum, it can lead to substantial morbidity, including tracheal injuries and ventilator-associated pneumonia (VAP).
While both positive and negative pressure noninvasive ventilation exists, noninvasive negative pressure ventilation such as the iron lung is no longer in use in Ontario. Noninvasive positive pressure ventilation provides ventilatory support through a facial or nasal mask and reduces inspiratory work. Noninvasive positive pressure ventilation can often be used intermittently for short periods of time to treat respiratory failure, which allows patients to continue to eat, drink, talk, and participate in their own treatment decisions. In addition, patients do not require sedation, airway defence mechanisms and swallowing functions are maintained, trauma to the trachea and larynx are avoided, and the risk for VAP is reduced. Common complications are damage to facial and nasal skin, higher incidence of gastric distension with aspiration risk, sleeping disorders, and conjunctivitis. In addition, NPPV does not allow direct access to the airway to drain secretions and requires patients to cooperate, and due to potential discomfort, compliance and tolerance may be low.
In addition to treating ARF, NPPV can be used to wean patients from IMV through the gradual removal of ventilation support until the patient can breathe spontaneously. Five to 30% of patients have difficultly weaning. Tapering levels of ventilatory support to wean patients from IMV can be achieved using IMV or NPPV. The use of NPPV helps to reduce the risk of VAP by shortening the time the patient is intubated.
Following extubation from IMV, ARF may recur, leading to extubation failure and the need for reintubation, which has been associated with increased risk of nosocomial pneumonia and mortality. To avoid these complications, NPPV has been proposed to help prevent ARF recurrence and/or to treat respiratory failure when it recurs, thereby preventing the need for reintubation.
Research Questions
What is the effectiveness, cost-effectiveness, and safety of NPPV for the treatment of acute hypercapnic respiratory failure due to acute exacerbations of COPD compared with
usual medical care, and
invasive mechanical ventilation?
What is the effectiveness, cost-effectiveness, and safety of NPPV compared with IMV in COPD patients after IMV for the following purposes:
weaning COPD patients from IMV,
preventing ARF in COPD patients after extubation from IMV, and
treating ARF in COPD patients after extubation from IMV?
Research Methods
Literature Search
A literature search was performed on December 3, 2010 using OVID MEDLINE, MEDLINE In-Process and Other Non-Indexed Citations, OVID EMBASE, the Cumulative Index to Nursing & Allied Health Literature (CINAHL), Wiley Cochrane, and the Centre for Reviews and Dissemination/International Agency for Health Technology Assessment (INAHTA) for studies published from January 1, 2004 until December 3, 2010. Abstracts were reviewed by a single reviewer and, for those studies meeting the eligibility criteria, full-text articles were obtained. Reference lists were also examined for any additional relevant studies not identified through the search.
Since there were numerous studies that examined the effectiveness of NPPV for the treatment of ARF due to exacerbations of COPD published before 2004, pre-2004 trials which met the inclusion/exclusion criteria for this evidence-based review were identified by hand-searching reference lists of included studies and systematic reviews.
Inclusion Criteria
English language full-reports;
health technology assessments, systematic reviews, meta-analyses, and randomized controlled trials (RCTs);
studies performed exclusively in patients with a diagnosis of COPD or studies performed with patients with a mix of conditions if results are reported for COPD patients separately;
patient population: (Question 1) patients with acute hypercapnic respiratory failure due to an exacerbation of COPD; (Question 2a) COPD patients being weaned from IMV; (Questions 2b and 2c) COPD patients who have been extubated from IMV.
Exclusion Criteria
< 18 years of age
animal studies
duplicate publications
grey literature
studies examining noninvasive negative pressure ventilation
studies comparing modes of ventilation
studies comparing patient-ventilation interfaces
studies examining outcomes not listed below, such as physiologic effects including heart rate, arterial blood gases, and blood pressure
Outcomes of Interest
mortality
intubation rates
length of stay (intensive care unit [ICU] and hospital)
health-related quality of life
breathlessness
duration of mechanical ventilation
weaning failure
complications
NPPV tolerance and compliance
Statistical Methods
When possible, results were pooled using Review Manager 5 Version 5.1, otherwise, the results were summarized descriptively. Dichotomous data were pooled into relative risks using random effects models and continuous data were pooled using weighted mean differences with a random effects model. Analyses using data from RCTs were done using intention-to-treat protocols; P values < 0.05 were considered significant. A priori subgroup analyses were planned for severity of respiratory failure, location of treatment (ICU or hospital ward), and mode of ventilation with additional subgroups as needed based on the literature. Post hoc sample size calculations were performed using STATA 10.1.
Quality of Evidence
The quality of each included study was assessed taking into consideration allocation concealment, randomization, blinding, power/sample size, withdrawals/dropouts, and intention-to-treat analyses.
The quality of the body of evidence was assessed as high, moderate, low, or very low according to the GRADE Working Group criteria. The following definitions of quality were used in grading the quality of the evidence:
Summary of Findings
NPPV for the Treatment of ARF due to Acute Exacerbations of COPD
NPPV Plus Usual Medical Care Versus Usual Medical Care Alone for First Line Treatment
A total of 1,000 participants were included in 11 RCTs1; the sample size ranged from 23 to 342. The mean age of the participants ranged from approximately 60 to 72 years of age. Based on either the Global Initiative for Chronic Obstructive Lung Disease (GOLD) COPD stage criteria or the mean percent predicted forced expiratory volume in 1 second (FEV1), 4 of the studies included people with severe COPD, and there was inadequate information to classify the remaining 7 studies by COPD severity. The severity of the respiratory failure was classified into 4 categories using the study population mean pH level as follows: mild (pH ≥ 7.35), moderate (7.30 ≤ pH < 7.35), severe (7.25 ≤ pH < 7.30), and very severe (pH < 7.25). Based on these categories, 3 studies included patients with a mild respiratory failure, 3 with moderate respiratory failure, 4 with severe respiratory failure, and 1 with very severe respiratory failure.
The studies were conducted either in the ICU (3 of 11 studies) or general or respiratory wards (8 of 11 studies) in hospitals, with patients in the NPPV group receiving bilevel positive airway pressure (BiPAP) ventilatory support, except in 2 studies, which used pressure support ventilation and volume cycled ventilation, respectively. Patients received ventilation through nasal, facial, or oronasal masks. All studies specified a protocol or schedule for NPPV delivery, but this varied substantially across the studies. For example, some studies restricted the amount of ventilation per day (e.g., 6 hours per day) and the number of days it was offered (e.g., maximum of 3 days); whereas, other studies provided patients with ventilation for as long as they could tolerate it and recommended it for much longer periods of time (e.g., 7 to 10 days). These differences are an important source of clinical heterogeneity between the studies. In addition to NPPV, all patients in the NPPV group also received UMC. Usual medical care varied between the studies, but common medications included supplemental oxygen, bronchodilators, corticosteroids, antibiotics, diuretics, and respiratory stimulators.
The individual quality of the studies ranged. Common methodological issues included lack of blinding and allocation concealment, and small sample sizes.
Need for Endotracheal Intubation
Eleven studies reported the need for endotracheal intubation as an outcome. The pooled results showed a significant reduction in the need for endotracheal intubation in the NPPV plus UMC group compared with the UMC alone group (relative risk [RR], 0.38; 95% confidence interval [CI], 0.28−0.50). When subgrouped by severity of respiratory failure, the results remained significant for the mild, severe, and very severe respiratory failure groups.
GRADE: moderate
Inhospital Mortality
Nine studies reported inhospital mortality as an outcome. The pooled results showed a significant reduction in inhospital mortality in the NPPV plus UMC group compared with the UMC group (RR, 0.53; 95% CI, 0.35−0.81). When subgrouped by severity of respiratory failure, the results remained significant for the moderate and severe respiratory failure groups.
GRADE: moderate
Hospital Length of Stay
Eleven studies reported hospital length of stay (LOS) as an outcome. The pooled results showed a significant decrease in the mean length of stay for the NPPV plus UMC group compared with the UMC alone group (weighted mean difference [WMD], −2.68 days; 95% CI, −4.41 to −0.94 days). When subgrouped by severity of respiratory failure, the results remained significant for the mild, severe, and very severe respiratory failure groups.
GRADE: moderate
Complications
Five studies reported complications. Common complications in the NPPV plus UMC group included pneumonia, gastrointestinal disorders or bleeds, skin abrasions, eye irritation, gastric insufflation, and sepsis. Similar complications were observed in the UMC group including pneumonia, sepsis, gastrointestinal disorders or bleeds, pneumothorax, and complicated endotracheal intubations. Many of the more serious complications in both groups occurred in those patients who required endotracheal intubation. Three of the studies compared complications in the NPPV plus UMC and UMC groups. While the data could not be pooled, overall, the NPPV plus UMC group experienced fewer complications than the UMC group.
GRADE: low
Tolerance/Compliance
Eight studies reported patient tolerance or compliance with NPPV as an outcome. NPPV intolerance ranged from 5% to 29%. NPPV tolerance was generally higher for patients with more severe respiratory failure. Compliance with the NPPV protocol was reported by 2 studies, which showed compliance decreases over time, even over short periods such as 3 days.
NPPV Versus IMV for the Treatment of Patients Who Failed Usual Medical Care
A total of 205 participants were included in 2 studies; the sample sizes of these studies were 49 and 156. The mean age of the patients was 71 to 73 years of age in 1 study, and the median age was 54 to 58 years of age in the second study. Based on either the GOLD COPD stage criteria or the mean percent predicted FEV1, patients in 1 study had very severe COPD. The COPD severity could not be classified in the second study. Both studies had study populations with a mean pH less than 7.23, which was classified as very severe respiratory failure in this analysis. One study enrolled patients with ARF due to acute exacerbations of COPD who had failed medical therapy. The patient population was not clearly defined in the second study, and it was not clear whether they had to have failed medical therapy before entry into the study.
Both studies were conducted in the ICU. Patients in the NPPV group received BiPAP ventilatory support through nasal or full facial masks. Patients in the IMV group received pressure support ventilation.
Common methodological issues included small sample size, lack of blinding, and unclear methods of randomization and allocation concealment. Due to the uncertainty about whether both studies included the same patient population and substantial differences in the direction and significance of the results, the results of the studies were not pooled.
Mortality
Both studies reported ICU mortality. Neither study showed a significant difference in ICU mortality between the NPPV and IMV groups, but 1 study showed a higher mortality rate in the NPPV group (21.7% vs. 11.5%) while the other study showed a lower mortality rate in the NPPV group (5.1% vs. 6.4%). One study reported 1-year mortality and showed a nonsignificant reduction in mortality in the NPPV group compared with the IMV group (26.1% vs. 46.1%).
GRADE: low to very low
Intensive Care Unit Length of Stay
Both studies reported LOS in the ICU. The results were inconsistent. One study showed a statistically significant shorter LOS in the NPPV group compared with the IMV group (5 ± 1.35 days vs. 9.29 ± 3 days; P < 0.001); whereas, the other study showed a nonsignificantly longer LOS in the NPPV group compared with the IMV group (22 ± 19 days vs. 21 ± 20 days; P = 0.86).
GRADE: very low
Duration of Mechanical Ventilation
Both studies reported the duration of mechanical ventilation (including both invasive and noninvasive ventilation). The results were inconsistent. One study showed a statistically significant shorter duration of mechanical ventilation in the NPPV group compared with the IMV group (3.92 ± 1.08 days vs. 7.17 ± 2.22 days; P < 0.001); whereas, the other study showed a nonsignificantly longer duration of mechanical ventilation in the NPPV group compared with the IMV group (16 ± 19 days vs. 15 ± 21 days; P = 0.86). GRADE: very low
Complications
Both studies reported ventilator-associated pneumonia and tracheotomies. Both showed a reduction in ventilator-associated pneumonia in the NPPV group compared with the IMV group, but the results were only significant in 1 study (13% vs. 34.6%, P = 0.07; and 6.4% vs. 37.2%, P < 0.001, respectively). Similarly, both studies showed a reduction in tracheotomies in the NPPV group compared with the IMV group, but the results were only significant in 1 study (13% vs. 23.1%, P = 0.29; and 6.4% vs. 34.6%; P < 0.001).
GRADE: very low
Other Outcomes
One of the studies followed patients for 12 months. At the end of follow-up, patients in the NPPV group had a significantly lower rate of needing de novo oxygen supplementation at home. In addition, the IMV group experienced significant increases in functional limitations due to COPD, while no increase was seen in the NPPV group. Finally, no significant differences were observed for hospital readmissions, ICU readmissions, and patients with an open tracheotomy, between the NPPV and IMV groups.
NPPV for Weaning COPD Patients From IMV
A total of 80 participants were included in the 2 RCTs; the sample sizes of the studies were 30 and 50 patients. The mean age of the participants ranged from 58 to 69 years of age. Based on either the GOLD COPD stage criteria or the mean percent predicted FEV1, both studies included patients with very severe COPD. Both studies also included patients with very severe respiratory failure (mean pH of the study populations was less than 7.23). Chronic obstructive pulmonary disease patients receiving IMV were enrolled in the study if they failed a T-piece weaning trial (spontaneous breathing test), so they could not be directly extubated from IMV.
Both studies were conducted in the ICU. Patients in the NPPV group received weaning using either BiPAP or pressure support ventilation NPPV through a face mask, and patients in the IMV weaning group received pressure support ventilation. In both cases, weaning was achieved by tapering the ventilation level.
The individual quality of the studies ranged. Common methodological problems included unclear randomization methods and allocation concealment, lack of blinding, and small sample size.
Mortality
Both studies reported mortality as an outcome. The pooled results showed a significant reduction in ICU mortality in the NPPV group compared with the IMV group (RR, 0.47; 95% CI, 0.23−0.97; P = 0.04).
GRADE: moderate
Intensive Care Unit Length of Stay
Both studies reported ICU LOS as an outcome. The pooled results showed a nonsignificant reduction in ICU LOS in the NPPV group compared with the IMV group (WMD, −5.21 days; 95% CI, −11.60 to 1.18 days).
GRADE: low
Duration of Mechanical Ventilation
Both studies reported duration of mechanical ventilation (including both invasive and noninvasive ventilation) as an outcome. The pooled results showed a nonsignificant reduction in duration of mechanical ventilation (WMD, −3.55 days; 95% CI, −8.55 to 1.44 days).
GRADE: low
Nosocomial Pneumonia
Both studies reported nosocominal pneumonia as an outcome. The pooled results showed a significant reduction in nosocomial pneumonia in the NPPV group compared with the IMV group (RR, 0.14; 95% CI, 0.03−0.71; P = 0.02).
GRADE: moderate
Weaning Failure
One study reported a significant reduction in weaning failure in the NPPV group compared with the IMV group, but the results were not reported in the publication. In this study, 1 of 25 patients in the NPPV group and 2 of 25 patients in the IMV group could not be weaned after 60 days in the ICU.
NPPV After Extubation of COPD Patients From IMV
The literature was reviewed to identify studies examining the effectiveness of NPPV compared with UMC in preventing recurrence of ARF after extubation from IMV or treating acute ARF which has recurred after extubation from IMV. No studies that included only COPD patients or reported results for COPD patients separately were identified for the prevention of ARF postextubation.
One study was identified for the treatment of ARF in COPD patients that recurred within 48 hours of extubation from IMV. This study included 221 patients, of whom 23 had COPD. A post hoc subgroup analysis was conducted examining the rate of reintubation in the COPD patients only. A nonsignificant reduction in the rate of reintubation was observed in the NPPV group compared with the UMC group (7 of 14 patients vs. 6 of 9 patients, P = 0.67). GRADE: low
Conclusions
NPPV Plus UMC Versus UMC Alone for First Line Treatment of ARF due to Acute Exacerbations of COPD
Moderate quality of evidence showed that compared with UMC, NPPV plus UMC significantly reduced the need for endotracheal intubation, inhospital mortality, and the mean length of hospital stay.
Low quality of evidence showed a lower rate of complications in the NPPV plus UMC group compared with the UMC group.
NPPV Versus IMV for the Treatment of ARF in Patients Who Have Failed UMC
Due to inconsistent and low to very low quality of evidence, there was insufficient evidence to draw conclusions on the comparison of NPPV versus IMV for patients who failed UMC.
NPPV for Weaning COPD Patients From IMV
Moderate quality of evidence showed that weaning COPD patients from IMV using NPPV results in significant reductions in mortality, nosocomial pneumonia, and weaning failure compared with weaning with IMV.
Low quality of evidence showed a nonsignificant reduction in the mean LOS and mean duration of mechanical ventilation in the NPPV group compared with the IMV group.
NPPV for the Treatment of ARF in COPD Patients After Extubation From IMV
Low quality of evidence showed a nonsignificant reduction in the rate of reintubation in the NPPV group compared with the UMC group; however, there was inadequate evidence to draw conclusions on the effectiveness of NPPV for the treatment of ARF in COPD patients after extubation from IMV
PMCID: PMC3384377  PMID: 23074436
22.  Social Isolation in Community-Dwelling Seniors 
Executive Summary
In early August 2007, the Medical Advisory Secretariat began work on the Aging in the Community project, an evidence-based review of the literature surrounding healthy aging in the community. The Health System Strategy Division at the Ministry of Health and Long-Term Care subsequently asked the secretariat to provide an evidentiary platform for the ministry’s newly released Aging at Home Strategy.
After a broad literature review and consultation with experts, the secretariat identified 4 key areas that strongly predict an elderly person’s transition from independent community living to a long-term care home. Evidence-based analyses have been prepared for each of these 4 areas: falls and fall-related injuries, urinary incontinence, dementia, and social isolation. For the first area, falls and fall-related injuries, an economic model is described in a separate report.
Please visit the Medical Advisory Secretariat Web site, http://www.health.gov.on.ca/english/providers/program/mas/mas_about.html, to review these titles within the Aging in the Community series.
Aging in the Community: Summary of Evidence-Based Analyses
Prevention of Falls and Fall-Related Injuries in Community-Dwelling Seniors: An Evidence-Based Analysis
Behavioural Interventions for Urinary Incontinence in Community-Dwelling Seniors: An Evidence-Based Analysis
Caregiver- and Patient-Directed Interventions for Dementia: An Evidence-Based Analysis
Social Isolation in Community-Dwelling Seniors: An Evidence-Based Analysis
The Falls/Fractures Economic Model in Ontario Residents Aged 65 Years and Over (FEMOR)
Objective of the Evidence-Based Analysis
The objective was to systematically review interventions aimed at preventing or reducing social isolation and loneliness in community-dwelling seniors, that is, persons ≥ 65 years of age who are not living in long-term care institutions. The analyses focused on the following questions:
Are interventions to reduce social isolation and/or loneliness effective?
Do these interventions improve health, well-being, and/or quality of life?
Do these interventions impact on independent community living by delaying or preventing functional decline or disability?
Do the interventions impact on health care utilization, such as physician visits, emergency visits, hospitalization, or admission to long-term care?
Background: Target Population and Condition
Social and family relationships are a core element of quality of life for seniors, and these relationships have been ranked second, next to health, as the most important area of life. Several related concepts—reduced social contact, being alone, isolation, and feelings of loneliness—have all been associated with a reduced quality of life in older people. Social isolation and loneliness have also been associated with a number of negative outcomes such as poor health, maladaptive behaviour, and depressed mood. Higher levels of loneliness have also been associated with increased likelihood of institutionalization.
Note: It is recognized that the terms “senior” and “elderly” carry a range of meanings for different audiences; this report generally uses the former, but the terms are treated here as essentially interchangeable.
Methods of the Evidence-Based Analysis
The scientific evidence base was evaluated through a systematic literature review. The literature searches were conducted with several computerized bibliographic databases for literature published between January 1980 and February 2008. The search was restricted to English-language reports on human studies and excluded letters, comments and editorials, and case reports. Journal articles eligible for inclusion in the review included those that reported on single, focused interventions directed towards or evaluating social isolation or loneliness; included, in whole or in part, community-dwelling seniors (≥ 65 years); included some quantitative outcome measure on social isolation or loneliness; and included a comparative group. Assessments of current practices were obtained through consultations with various individuals and agencies including the Ontario Community Care Access Centres and the Ontario Assistive Devices Program. An Ontario-based budget impact was also assessed for the identified effective interventions for social isolation.
Findings
A systematic review of the published literature focusing on interventions for social isolation and loneliness in community-dwelling seniors identified 11 quantitative studies. The studies involved European or American populations with diverse recruitment strategies, intervention objectives, and limited follow-up, with cohorts from 10 to 15 years ago involving mainly elderly women less than 75 years of age. The studies involved 2 classes of interventions: in-person group support activities and technology-assisted interventions. These were delivered to diverse targeted groups of seniors such as those with mental distress, physically inactive seniors, low-income groups, and informal caregivers. The interventions were primarily focused on behaviour-based change. Modifying factors (client attitude or preference) and process issues (targeting methods of at-risk subjects, delivery methods, and settings) influenced intervention participation and outcomes.
Both classes of interventions were found to reduce social isolation and loneliness in seniors. Social support groups were found to effectively decrease social isolation for seniors on wait lists for senior apartments and those living in senior citizen apartments. Community-based exercise programs featuring health and wellness for physically inactive community-dwelling seniors also effectively reduced loneliness. Rehabilitation for mild/moderate hearing loss was effective in improving communication disabilities and reducing loneliness in seniors. Interventions evaluated for informal caregivers of seniors with dementia, however, had limited effectiveness for social isolation or loneliness.
Research into interventions for social isolation in seniors has not been broadly based, relative to the diverse personal, social, health, economic, and environmentally interrelated factors potentially affecting isolation. Although rehabilitation for hearing-related disability was evaluated, the systematic review did not locate research on interventions for other common causes of aging-related disability and loneliness, such as vision loss or mobility declines. Despite recent technological advances in e-health or telehealth, controlled studies evaluating technology-assisted interventions for social isolation have examined only basic technologies such as phone- or computer-mediated support groups.
Conclusions
Although effective interventions were identified for social isolation and loneliness in community-dwelling seniors, they were directed at specifically targeted groups and involved only a few of the many potential causes of social isolation. Little research has been directed at identifying effective interventions that influence the social isolation and other burdens imposed upon caregivers, in spite of the key role that caregivers assume in caring for seniors. The evidence on technology-assisted interventions and their effects on the social health and well-being of seniors and their caregivers is limited, but increasing demand for home health care and the need for efficiencies warrant further exploration. Interventions for social isolation in community-dwelling seniors need to be researched more broadly in order to develop effective, appropriate, and comprehensive strategies for at-risk populations.
PMCID: PMC3377559  PMID: 23074510
23.  Doctor-patient communication with people with intellectual disability - a qualitative study 
BMC Family Practice  2009;10:82.
Background
People with intellectual disability (ID) expressed dissatisfaction with doctor-patient communication and mentioned certain preferences for this communication (our research). Since many people with ID in the Netherlands have recently moved from residential care facilities to supported accommodations in the community, medical care for them was transferred from ID physicians (IDPs) to general practitioners (GPs) in the vicinity of the new accommodation. We addressed the following research question: 'What are the similarities and differences between the communication preferences of people with ID and the professional criteria for doctor-patient communication by GPs?'
Methods
A focus group meeting and interviews were used to identify the preferences of 12 persons with ID for good communication with their GP; these were compared with communication criteria used to assess trainee GPs, as described in the MAAS-Global manual.
Results
Eight preferences for doctor-patient communication were formulated by the people with ID. Six of them matched the criteria used for GPs. Improvements are required as regards the time available for consultation, demonstrating physical examinations before applying them and triadic communication.
Conclusions
People with ID hold strong views on communication with their doctors during consultations. GPs, people with ID and their support workers can further fine-tune their communication skills.
doi:10.1186/1471-2296-10-82
PMCID: PMC2806856  PMID: 20017938
24.  Hospital-at-Home Programs for Patients With Acute Exacerbations of Chronic Obstructive Pulmonary Disease (COPD) 
Executive Summary
In July 2010, the Medical Advisory Secretariat (MAS) began work on a Chronic Obstructive Pulmonary Disease (COPD) evidentiary framework, an evidence-based review of the literature surrounding treatment strategies for patients with COPD. This project emerged from a request by the Health System Strategy Division of the Ministry of Health and Long-Term Care that MAS provide them with an evidentiary platform on the effectiveness and cost-effectiveness of COPD interventions.
After an initial review of health technology assessments and systematic reviews of COPD literature, and consultation with experts, MAS identified the following topics for analysis: vaccinations (influenza and pneumococcal), smoking cessation, multidisciplinary care, pulmonary rehabilitation, long-term oxygen therapy, noninvasive positive pressure ventilation for acute and chronic respiratory failure, hospital-at-home for acute exacerbations of COPD, and telehealth (including telemonitoring and telephone support). Evidence-based analyses were prepared for each of these topics. For each technology, an economic analysis was also completed where appropriate. In addition, a review of the qualitative literature on patient, caregiver, and provider perspectives on living and dying with COPD was conducted, as were reviews of the qualitative literature on each of the technologies included in these analyses.
The Chronic Obstructive Pulmonary Disease Mega-Analysis series is made up of the following reports, which can be publicly accessed at the MAS website at: http://www.hqontario.ca/en/mas/mas_ohtas_mn.html.
Chronic Obstructive Pulmonary Disease (COPD) Evidentiary Framework
Influenza and Pneumococcal Vaccinations for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Smoking Cessation for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Community-Based Multidisciplinary Care for Patients With Stable Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Pulmonary Rehabilitation for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Long-term Oxygen Therapy for Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Noninvasive Positive Pressure Ventilation for Acute Respiratory Failure Patients With Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Noninvasive Positive Pressure Ventilation for Chronic Respiratory Failure Patients With Stable Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Hospital-at-Home Programs for Patients With Acute Exacerbations of Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Home Telehealth for Patients with Chronic Obstructive Pulmonary Disease (COPD): An Evidence-Based Analysis
Cost-Effectiveness of Interventions for Chronic Obstructive Pulmonary Disease Using an Ontario Policy Model
Experiences of Living and Dying With COPD: A Systematic Review and Synthesis of the Qualitative Empirical Literature
For more information on the qualitative review, please contact Mita Giacomini at: http://fhs.mcmaster.ca/ceb/faculty_member_giacomini.htm.
For more information on the economic analysis, please visit the PATH website: http://www.path-hta.ca/About-Us/Contact-Us.aspx.
The Toronto Health Economics and Technology Assessment (THETA) collaborative has produced an associated report on patient preference for mechanical ventilation. For more information, please visit the THETA website: http://theta.utoronto.ca/static/contact.
Objective
The objective of this analysis was to compare hospital-at-home care with inpatient hospital care for patients with acute exacerbations of chronic obstructive pulmonary disease (COPD) who present to the emergency department (ED).
Clinical Need: Condition and Target Population
Acute Exacerbations of Chronic Obstructive Pulmonary Disease
Chronic obstructive pulmonary disease is a disease state characterized by airflow limitation that is not fully reversible. This airflow limitation is usually both progressive and associated with an abnormal inflammatory response of the lungs to noxious particles or gases. The natural history of COPD involves periods of acute-onset worsening of symptoms, particularly increased breathlessness, cough, and/or sputum, that go beyond normal day-to-day variations; these are known as acute exacerbations.
Two-thirds of COPD exacerbations are caused by an infection of the tracheobronchial tree or by air pollution; the cause in the remaining cases is unknown. On average, patients with moderate to severe COPD experience 2 or 3 exacerbations each year.
Exacerbations have an important impact on patients and on the health care system. For the patient, exacerbations result in decreased quality of life, potentially permanent losses of lung function, and an increased risk of mortality. For the health care system, exacerbations of COPD are a leading cause of ED visits and hospitalizations, particularly in winter.
Technology
Hospital-at-home programs offer an alternative for patients who present to the ED with an exacerbation of COPD and require hospital admission for their treatment. Hospital-at-home programs provide patients with visits in their home by medical professionals (typically specialist nurses) who monitor the patients, alter patients’ treatment plans if needed, and in some programs, provide additional care such as pulmonary rehabilitation, patient and caregiver education, and smoking cessation counselling.
There are 2 types of hospital-at-home programs: admission avoidance and early discharge hospital-at-home. In the former, admission avoidance hospital-at-home, after patients are assessed in the ED, they are prescribed the necessary medications and additional care needed (e.g., oxygen therapy) and then sent home where they receive regular visits from a medical professional. In early discharge hospital-at-home, after being assessed in the ED, patients are admitted to the hospital where they receive the initial phase of their treatment. These patients are discharged into a hospital-at-home program before the exacerbation has resolved. In both cases, once the exacerbation has resolved, the patient is discharged from the hospital-at-home program and no longer receives visits in his/her home.
In the models that exist to date, hospital-at-home programs differ from other home care programs because they deal with higher acuity patients who require higher acuity care, and because hospitals retain the medical and legal responsibility for patients. Furthermore, patients requiring home care services may require such services for long periods of time or indefinitely, whereas patients in hospital-at-home programs require and receive the services for a short period of time only.
Hospital-at-home care is not appropriate for all patients with acute exacerbations of COPD. Ineligible patients include: those with mild exacerbations that can be managed without admission to hospital; those who require admission to hospital; and those who cannot be safely treated in a hospital-at-home program either for medical reasons and/or because of a lack of, or poor, social support at home.
The proposed possible benefits of hospital-at-home for treatment of exacerbations of COPD include: decreased utilization of health care resources by avoiding hospital admission and/or reducing length of stay in hospital; decreased costs; increased health-related quality of life for patients and caregivers when treated at home; and reduced risk of hospital-acquired infections in this susceptible patient population.
Ontario Context
No hospital-at-home programs for the treatment of acute exacerbations of COPD were identified in Ontario. Patients requiring acute care for their exacerbations are treated in hospitals.
Research Question
What is the effectiveness, cost-effectiveness, and safety of hospital-at-home care compared with inpatient hospital care of acute exacerbations of COPD?
Research Methods
Literature Search
Search Strategy
A literature search was performed on August 5, 2010, using OVID MEDLINE, OVID MEDLINE In-Process and Other Non-Indexed Citations, OVID EMBASE, EBSCO Cumulative Index to Nursing & Allied Health Literature (CINAHL), the Wiley Cochrane Library, and the Centre for Reviews and Dissemination database for studies published from January 1, 1990, to August 5, 2010. Abstracts were reviewed by a single reviewer and, for those studies meeting the eligibility criteria, full-text articles were obtained. Reference lists and health technology assessment websites were also examined for any additional relevant studies not identified through the systematic search.
Inclusion Criteria
English language full-text reports;
health technology assessments, systematic reviews, meta-analyses, and randomized controlled trials (RCTs);
studies performed exclusively in patients with a diagnosis of COPD or studies including patients with COPD as well as patients with other conditions, if results are reported for COPD patients separately;
studies performed in patients with acute exacerbations of COPD who present to the ED;
studies published between January 1, 1990, and August 5, 2010;
studies comparing hospital-at-home and inpatient hospital care for patients with acute exacerbations of COPD;
studies that include at least 1 of the outcomes of interest (listed below).
Cochrane Collaboration reviews have defined hospital-at-home programs as those that provide patients with active treatment for their acute exacerbation in their home by medical professionals for a limited period of time (in this case, until the resolution of the exacerbation). If a hospital-at-home program had not been available, these patients would have been admitted to hospital for their treatment.
Exclusion Criteria
< 18 years of age
animal studies
duplicate publications
grey literature
Outcomes of Interest
Patient/clinical outcomes
mortality
lung function (forced expiratory volume in 1 second)
health-related quality of life
patient or caregiver preference
patient or caregiver satisfaction with care
complications
Health system outcomes
hospital readmissions
length of stay in hospital and hospital-at-home
ED visits
transfer to long-term care
days to readmission
eligibility for hospital-at-home
Statistical Methods
When possible, results were pooled using Review Manager 5 Version 5.1; otherwise, results were summarized descriptively. Data from RCTs were analyzed using intention-to-treat protocols. In addition, a sensitivity analysis was done assigning all missing data/withdrawals to the event. P values less than 0.05 were considered significant. A priori subgroup analyses were planned for the acuity of hospital-at-home program, type of hospital-at-home program (early discharge or admission avoidance), and severity of the patients’ COPD. Additional subgroup analyses were conducted as needed based on the identified literature. Post hoc sample size calculations were performed using STATA 10.1.
Quality of Evidence
The quality of each included study was assessed, taking into consideration allocation concealment, randomization, blinding, power/sample size, withdrawals/dropouts, and intention-to-treat analyses.
The quality of the body of evidence was assessed as high, moderate, low, or very low according to the GRADE Working Group criteria. The following definitions of quality were used in grading the quality of the evidence:
Summary of Findings
Fourteen studies met the inclusion criteria and were included in this review: 1 health technology assessment, 5 systematic reviews, and 7 RCTs.
The following conclusions are based on low to very low quality of evidence. The reviewed evidence was based on RCTs that were inadequately powered to observe differences between hospital-at-home and inpatient hospital care for most outcomes, so there is a strong possibility of type II error. Given the low to very low quality of evidence, these conclusions must be considered with caution.
Approximately 21% to 37% of patients with acute exacerbations of COPD who present to the ED may be eligible for hospital-at-home care.
Of the patients who are eligible for care, some may refuse to participate in hospital-at-home care.
Eligibility for hospital-at-home care may be increased depending on the design of the hospital-at-home program, such as the size of the geographical service area for hospital-at-home and the hours of operation for patient assessment and entry into hospital-at-home.
Hospital-at-home care for acute exacerbations of COPD was associated with a nonsignificant reduction in the risk of mortality and hospital readmissions compared with inpatient hospital care during 2- to 6-month follow-up.
Limited, very low quality evidence suggests that hospital readmissions are delayed in patients who received hospital-at-home care compared with those who received inpatient hospital care (mean additional days before readmission comparing hospital-at-home to inpatient hospital care ranged from 4 to 38 days).
There is insufficient evidence to determine whether hospital-at-home care, compared with inpatient hospital care, is associated with improved lung function.
The majority of studies did not find significant differences between hospital-at-home and inpatient hospital care for a variety of health-related quality of life measures at follow-up. However, follow-up may have been too late to observe an impact of hospital-at-home care on quality of life.
A conclusion about the impact of hospital-at-home care on length of stay for the initial exacerbation (defined as days in hospital or days in hospital plus hospital-at-home care for inpatient hospital and hospital-at-home, respectively) could not be determined because of limited and inconsistent evidence.
Patient and caregiver satisfaction with care is high for both hospital-at-home and inpatient hospital care.
PMCID: PMC3384361  PMID: 23074420
25.  Caregiver- and Patient-Directed Interventions for Dementia 
Executive Summary
In early August 2007, the Medical Advisory Secretariat began work on the Aging in the Community project, an evidence-based review of the literature surrounding healthy aging in the community. The Health System Strategy Division at the Ministry of Health and Long-Term Care subsequently asked the secretariat to provide an evidentiary platform for the ministry’s newly released Aging at Home Strategy.
After a broad literature review and consultation with experts, the secretariat identified 4 key areas that strongly predict an elderly person’s transition from independent community living to a long-term care home. Evidence-based analyses have been prepared for each of these 4 areas: falls and fall-related injuries, urinary incontinence, dementia, and social isolation. For the first area, falls and fall-related injuries, an economic model is described in a separate report.
Please visit the Medical Advisory Secretariat Web site, http://www.health.gov.on.ca/english/providers/program/mas/mas_about.html, to review these titles within the Aging in the Community series.
Aging in the Community: Summary of Evidence-Based Analyses
Prevention of Falls and Fall-Related Injuries in Community-Dwelling Seniors: An Evidence-Based Analysis
Behavioural Interventions for Urinary Incontinence in Community-Dwelling Seniors: An Evidence-Based Analysis
Caregiver- and Patient-Directed Interventions for Dementia: An Evidence-Based Analysis
Social Isolation in Community-Dwelling Seniors: An Evidence-Based Analysis
The Falls/Fractures Economic Model in Ontario Residents Aged 65 Years and Over (FEMOR)
This report features the evidence-based analysis on caregiver- and patient-directed interventions for dementia and is broken down into 4 sections:
Introduction
Caregiver-Directed Interventions for Dementia
Patient-Directed Interventions for Dementia
Economic Analysis of Caregiver- and Patient-Directed Interventions for Dementia
Caregiver-Directed Interventions for Dementia
Objective
To identify interventions that may be effective in supporting the well-being of unpaid caregivers of seniors with dementia living in the community.
Clinical Need: Target Population and Condition
Dementia is a progressive and largely irreversible syndrome that is characterized by a loss of cognitive function severe enough to impact social or occupational functioning. The components of cognitive function affected include memory and learning, attention, concentration and orientation, problem-solving, calculation, language, and geographic orientation. Dementia was identified as one of the key predictors in a senior’s transition from independent community living to admission to a long-term care (LTC) home, in that approximately 90% of individuals diagnosed with dementia will be institutionalized before death. In addition, cognitive decline linked to dementia is one of the most commonly cited reasons for institutionalization.
Prevalence estimates of dementia in the Ontario population have largely been extrapolated from the Canadian Study of Health and Aging conducted in 1991. Based on these estimates, it is projected that there will be approximately 165,000 dementia cases in Ontario in the year 2008, and by 2010 the number of cases will increase by nearly 17% over 2005 levels. By 2020 the number of cases is expected to increase by nearly 55%, due to a rise in the number of people in the age categories with the highest prevalence (85+). With the increase in the aging population, dementia will continue to have a significant economic impact on the Canadian health care system. In 1991, the total costs associated with dementia in Canada were $3.9 billion (Cdn) with $2.18 billion coming from LTC.
Caregivers play a crucial role in the management of individuals with dementia because of the high level of dependency and morbidity associated with the condition. It has been documented that a greater demand is faced by dementia caregivers compared with caregivers of persons with other chronic diseases. The increased burden of caregiving contributes to a host of chronic health problems seen among many informal caregivers of persons with dementia. Much of this burden results from managing the behavioural and psychological symptoms of dementia (BPSD), which have been established as a predictor of institutionalization for elderly patients with dementia.
It is recognized that for some patients with dementia, an LTC facility can provide the most appropriate care; however, many patients move into LTC unnecessarily. For individuals with dementia to remain in the community longer, caregivers require many types of formal and informal support services to alleviate the stress of caregiving. These include both respite care and psychosocial interventions. Psychosocial interventions encompass a broad range of interventions such as psychoeducational interventions, counseling, supportive therapy, and behavioural interventions.
Assuming that 50% of persons with dementia live in the community, a conservative estimate of the number of informal caregivers in Ontario is 82,500. Accounting for the fact that 29% of people with dementia live alone, this leaves a remaining estimate of 58,575 Ontarians providing care for a person with dementia with whom they reside.
Description of Interventions
The 2 main categories of caregiver-directed interventions examined in this review are respite care and psychosocial interventions. Respite care is defined as a break or relief for the caregiver. In most cases, respite is provided in the home, through day programs, or at institutions (usually 30 days or less). Depending on a caregiver’s needs, respite services will vary in delivery and duration. Respite care is carried out by a variety of individuals, including paid staff, volunteers, family, or friends.
Psychosocial interventions encompass a broad range of interventions and have been classified in various ways in the literature. This review will examine educational, behavioural, dementia-specific, supportive, and coping interventions. The analysis focuses on behavioural interventions, that is, those designed to help the caregiver manage BPSD. As described earlier, BPSD are one of the most challenging aspects of caring for a senior with dementia, causing an increase in caregiver burden. The analysis also examines multicomponent interventions, which include at least 2 of the above-mentioned interventions.
Methods of Evidence-Based Analysis
A comprehensive search strategy was used to identify systematic reviews and randomized controlled trials (RCTs) that examined the effectiveness of interventions for caregivers of dementia patients.
Questions
Section 2.1
Are respite care services effective in supporting the well-being of unpaid caregivers of seniors with dementia in the community?
Do respite care services impact on rates of institutionalization of these seniors?
Section 2.2
Which psychosocial interventions are effective in supporting the well-being of unpaid caregivers of seniors with dementia in the community?
Which interventions reduce the risk for institutionalization of seniors with dementia?
Outcomes of Interest
any quantitative measure of caregiver psychological health, including caregiver burden, depression, quality of life, well-being, strain, mastery (taking control of one’s situation), reactivity to behaviour problems, etc.;
rate of institutionalization; and
cost-effectiveness.
Assessment of Quality of Evidence
The quality of the evidence was assessed as High, Moderate, Low, or Very low according to the GRADE methodology and GRADE Working Group. As per GRADE the following definitions apply:
Summary of Findings
Conclusions in Table 1 are drawn from Sections 2.1 and 2.2 of the report.
Summary of Conclusions on Caregiver-Directed Interventions
There is limited evidence from RCTs that respite care is effective in improving outcomes for those caring for seniors with dementia.
There is considerable qualitative evidence of the perceived benefits of respite care.
Respite care is known as one of the key formal support services for alleviating caregiver burden in those caring for dementia patients.
Respite care services need to be tailored to individual caregiver needs as there are vast differences among caregivers and patients with dementia (severity, type of dementia, amount of informal/formal support available, housing situation, etc.)
There is moderate- to high-quality evidence that individual behavioural interventions (≥ 6 sessions), directed towards the caregiver (or combined with the patient) are effective in improving psychological health in dementia caregivers.
There is moderate- to high-quality evidence that multicomponent interventions improve caregiver psychosocial health and may affect rates of institutionalization of dementia patients.
RCT indicates randomized controlled trial.
Patient-Directed Interventions for Dementia
Objective
The section on patient-directed interventions for dementia is broken down into 4 subsections with the following questions:
3.1 Physical Exercise for Seniors with Dementia – Secondary Prevention
What is the effectiveness of physical exercise for the improvement or maintenance of basic activities of daily living (ADLs), such as eating, bathing, toileting, and functional ability, in seniors with mild to moderate dementia?
3.2 Nonpharmacologic and Nonexercise Interventions to Improve Cognitive Functioning in Seniors With Dementia – Secondary Prevention
What is the effectiveness of nonpharmacologic interventions to improve cognitive functioning in seniors with mild to moderate dementia?
3.3 Physical Exercise for Delaying the Onset of Dementia – Primary Prevention
Can exercise decrease the risk of subsequent cognitive decline/dementia?
3.4 Cognitive Interventions for Delaying the Onset of Dementia – Primary Prevention
Does cognitive training decrease the risk of cognitive impairment, deterioration in the performance of basic ADLs or instrumental activities of daily living (IADLs),1 or incidence of dementia in seniors with good cognitive and physical functioning?
Clinical Need: Target Population and Condition
Secondary Prevention2
Exercise
Physical deterioration is linked to dementia. This is thought to be due to reduced muscle mass leading to decreased activity levels and muscle atrophy, increasing the potential for unsafe mobility while performing basic ADLs such as eating, bathing, toileting, and functional ability.
Improved physical conditioning for seniors with dementia may extend their independent mobility and maintain performance of ADL.
Nonpharmacologic and Nonexercise Interventions
Cognitive impairments, including memory problems, are a defining feature of dementia. These impairments can lead to anxiety, depression, and withdrawal from activities. The impact of these cognitive problems on daily activities increases pressure on caregivers.
Cognitive interventions aim to improve these impairments in people with mild to moderate dementia.
Primary Prevention3
Exercise
Various vascular risk factors have been found to contribute to the development of dementia (e.g., hypertension, hypercholesterolemia, diabetes, overweight).
Physical exercise is important in promoting overall and vascular health. However, it is unclear whether physical exercise can decrease the risk of cognitive decline/dementia.
Nonpharmacologic and Nonexercise Interventions
Having more years of education (i.e., a higher cognitive reserve) is associated with a lower prevalence of dementia in crossectional population-based studies and a lower incidence of dementia in cohorts followed longitudinally. However, it is unclear whether cognitive training can increase cognitive reserve or decrease the risk of cognitive impairment, prevent or delay deterioration in the performance of ADLs or IADLs or reduce the incidence of dementia.
Description of Interventions
Physical exercise and nonpharmacologic/nonexercise interventions (e.g., cognitive training) for the primary and secondary prevention of dementia are assessed in this review.
Evidence-Based Analysis Methods
A comprehensive search strategy was used to identify systematic reviews and RCTs that examined the effectiveness, safety and cost effectiveness of exercise and cognitive interventions for the primary and secondary prevention of dementia.
Questions
Section 3.1: What is the effectiveness of physical exercise for the improvement or maintenance of ADLs in seniors with mild to moderate dementia?
Section 3.2: What is the effectiveness of nonpharmacologic/nonexercise interventions to improve cognitive functioning in seniors with mild to moderate dementia?
Section 3.3: Can exercise decrease the risk of subsequent cognitive decline/dementia?
Section 3.4: Does cognitive training decrease the risk of cognitive impairment, prevent or delay deterioration in the performance of ADLs or IADLs, or reduce the incidence of dementia in seniors with good cognitive and physical functioning?
Assessment of Quality of Evidence
The quality of the evidence was assessed as High, Moderate, Low, or Very low according to the GRADE methodology. As per GRADE the following definitions apply:
Summary of Findings
Table 2 summarizes the conclusions from Sections 3.1 through 3.4.
Summary of Conclusions on Patient-Directed Interventions*
Previous systematic review indicated that “cognitive training” is not effective in patients with dementia.
A recent RCT suggests that CST (up to 7 weeks) is effective for improving cognitive function and quality of life in patients with dementia.
Regular leisure time physical activity in midlife is associated with a reduced risk of dementia in later life (mean follow-up 21 years).
Regular physical activity in seniors is associated with a reduced risk of cognitive decline (mean follow-up 2 years).
Regular physical activity in seniors is associated with a reduced risk of dementia (mean follow-up 6–7 years).
Evidence that cognitive training for specific functions (memory, reasoning, and speed of processing) produces improvements in these specific domains.
Limited inconclusive evidence that cognitive training can offset deterioration in the performance of self-reported IADL scores and performance assessments.
1° indicates primary; 2°, secondary; CST, cognitive stimulation therapy; IADL, instrumental activities of daily living; RCT, randomized controlled trial.
Benefit/Risk Analysis
As per the GRADE Working Group, the overall recommendations consider 4 main factors:
the trade-offs, taking into account the estimated size of the effect for the main outcome, the confidence limits around those estimates, and the relative value placed on the outcome;
the quality of the evidence;
translation of the evidence into practice in a specific setting, taking into consideration important factors that could be expected to modify the size of the expected effects such as proximity to a hospital or availability of necessary expertise; and
uncertainty about the baseline risk for the population of interest.
The GRADE Working Group also recommends that incremental costs of health care alternatives should be considered explicitly alongside the expected health benefits and harms. Recommendations rely on judgments about the value of the incremental health benefits in relation to the incremental costs. The last column in Table 3 reflects the overall trade-off between benefits and harms (adverse events) and incorporates any risk/uncertainty (cost-effectiveness).
Overall Summary Statement of the Benefit and Risk for Patient-Directed Interventions*
Economic Analysis
Budget Impact Analysis of Effective Interventions for Dementia
Caregiver-directed behavioural techniques and patient-directed exercise programs were found to be effective when assessing mild to moderate dementia outcomes in seniors living in the community. Therefore, an annual budget impact was calculated based on eligible seniors in the community with mild and moderate dementia and their respective caregivers who were willing to participate in interventional home sessions. Table 4 describes the annual budget impact for these interventions.
Annual Budget Impact (2008 Canadian Dollars)
Assumed 7% prevalence of dementia aged 65+ in Ontario.
Assumed 8 weekly sessions plus 4 monthly phone calls.
Assumed 12 weekly sessions plus biweekly sessions thereafter (total of 20).
Assumed 2 sessions per week for first 5 weeks. Assumed 90% of seniors in the community with dementia have mild to moderate disease. Assumed 4.5% of seniors 65+ are in long-term care, and the remainder are in the community. Assumed a rate of participation of 60% for both patients and caregivers and of 41% for patient-directed exercise. Assumed 100% compliance since intervention administered at the home. Cost for trained staff from Ministry of Health and Long-Term Care data source. Assumed cost of personal support worker to be equivalent to in-home support. Cost for recreation therapist from Alberta government Website.
Note: This budget impact analysis was calculated for the first year after introducing the interventions from the Ministry of Health and Long-Term Care perspective using prevalence data only. Prevalence estimates are for seniors in the community with mild to moderate dementia and their respective caregivers who are willing to participate in an interventional session administered at the home setting. Incidence and mortality rates were not factored in. Current expenditures in the province are unknown and therefore were not included in the analysis. Numbers may change based on population trends, rate of intervention uptake, trends in current programs in place in the province, and assumptions on costs. The number of patients was based on patients likely to access these interventions in Ontario based on assumptions stated below from the literature. An expert panel confirmed resource consumption.
PMCID: PMC3377513  PMID: 23074509

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