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1.  General practitioners' views on reattribution for patients with medically unexplained symptoms: a questionnaire and qualitative study 
BMC Family Practice  2008;9:46.
Background
The successful introduction of new methods for managing medically unexplained symptoms in primary care is dependent to a large degree on the attitudes, experiences and expectations of practitioners. As part of an exploratory randomised controlled trial of reattribution training, we sought the views of participating practitioners on patients with medically unexplained symptoms, and on the value of and barriers to the implementation of reattribution in practice.
Methods
A nested attitudinal survey and qualitative study in sixteen primary care teams in north-west England. All practitioners participating in the trial (n = 74) were invited to complete a structured survey. Semi-structured interviews were undertaken with a purposive sub-sample of survey respondents, using a structured topic guide. Interview transcripts were used to identify key issues, concepts and themes, which were grouped to construct a conceptual framework: this framework was applied systematically to the data.
Results
Seventy (95%) of study participants responded to the survey. Survey respondents often found it stressful to work with patients with medically unexplained symptoms, though those who had received reattribution training were more optimistic about their ability to help them. Interview participants trained in reattribution (n = 12) reported that reattribution increased their confidence to practice in a difficult area, with heightened awareness, altered perceptions of these patients, improved opportunities for team-building and transferable skills. However general practitioners also reported potential barriers to the implementation of reattribution in routine clinical practice, at the level of the patient, the doctor, the consultation, diagnosis and the healthcare context.
Conclusion
Reattribution training increases practitioners' sense of competence in managing patients with medically unexplained symptoms. However, barriers to its implementation are considerable, and frequently lie outside the control of a group of practitioners generally sympathetic to patients with medically unexplained symptoms and the purpose of reattribution. These findings add further to the evidence of the difficulty of implementing reattribution in routine general practice.
doi:10.1186/1471-2296-9-46
PMCID: PMC2533666  PMID: 18713473
2.  Why do General Practitioners Decline Training to Improve Management of Medically Unexplained Symptoms? 
Background
General practitioners’ (GPs) communication with patients presenting medically unexplained symptoms (MUS) has the potential to somatize patients’ problems and intensify dependence on medical care. Several reports indicate that GPs have negative attitudes about patients with MUS. If these attitudes deter participation in training or other methods to improve communication, practitioners who most need help will not receive it.
Objective
To identify how GPs’ attitudes to patients with MUS might inhibit their participation with training to improve management.
Design
Qualitative study.
Participants
GPs (N = 33) who had declined or accepted training in reattribution techniques in the context of a research trial.
Approach
GPs were interviewed and their accounts analysed qualitatively.
Results
Although attitudes that devalued patients with MUS were common in practitioners who had declined training, these coexisted, in the same practitioners, with evidence of intuitive and elaborate psychological work with these patients. However, these practitioners devalued their psychological skills. GPs who had accepted training also described working psychologically with MUS but devalued neither patients with MUS nor their own psychological skills.
Conclusions
GPs’ attitudes that suggested disengagement from patients with MUS belied their pursuit of psychological objectives. We therefore suggest that, whereas negative attitudes to patients have previously been regarded as the main barrier to involvement in measures to improve patient management, GPs devaluing of their own psychological skills with these patients may be more important.
doi:10.1007/s11606-006-0094-z
PMCID: PMC1855690  PMID: 17443362
medically unexplained symptoms; general practitioners; management; psychological skills; attitudes
3.  Why do General Practitioners Decline Training to Improve Management of Medically Unexplained Symptoms? 
Background
General practitioners’ (GPs) communication with patients presenting medically unexplained symptoms (MUS) has the potential to somatize patients’ problems and intensify dependence on medical care. Several reports indicate that GPs have negative attitudes about patients with MUS. If these attitudes deter participation in training or other methods to improve communication, practitioners who most need help will not receive it.
Objective
To identify how GPs’ attitudes to patients with MUS might inhibit their participation with training to improve management.
Design
Qualitative study.
Participants
GPs (N = 33) who had declined or accepted training in reattribution techniques in the context of a research trial.
Approach
GPs were interviewed and their accounts analysed qualitatively.
Results
Although attitudes that devalued patients with MUS were common in practitioners who had declined training, these coexisted, in the same practitioners, with evidence of intuitive and elaborate psychological work with these patients. However, these practitioners devalued their psychological skills. GPs who had accepted training also described working psychologically with MUS but devalued neither patients with MUS nor their own psychological skills.
Conclusions
GPs’ attitudes that suggested disengagement from patients with MUS belied their pursuit of psychological objectives. We therefore suggest that, whereas negative attitudes to patients have previously been regarded as the main barrier to involvement in measures to improve patient management, GPs devaluing of their own psychological skills with these patients may be more important.
doi:10.1007/s11606-006-0094-z
PMCID: PMC1855690  PMID: 17443362
medically unexplained symptoms; general practitioners; management; psychological skills; attitudes
4.  Integrating nurse-led Self-Management Support (SMS) in routine primary care: design of a hybrid effectiveness-implementation study among type 2 diabetes patients with problems of daily functioning and emotional distress: a study protocol 
BMC Family Practice  2013;14:77.
Background
Psychosocial problems are more prevalent among patients with chronic diseases than among the general population. They may lead to a downward spiral of poor adherence, deterioration of the condition and decline in daily functioning. In addition to medical management, systematic attention to emotional and role management tasks during routine chronic care seems mandatory. We intend to integrate an existing nurse-led minimal psychological intervention to support patients’ self-management, which appeared to be effective and cost-effective, in routine care by primary care nurses, so we adjusted it to fit the host setting. The resulting Self-Management Support (SMS) programme involves early detection of patients with emotional distress and problems of daily functioning, as well as self-management support through problem solving and reattribution techniques. Strategies to embed SMS in daily practice include training and booster sessions for practice nurses as well as organisational and financial arrangements. This study aims to simultaneously evaluate the implementation process and effects of SMS in routine care, using a hybrid effectiveness–implementation design.
Methods/Design
Registration data, questionnaires and interviews will be used to explore the facilitators, barriers and costs regarding successful implementation of SMS. The effects of SMS will be evaluated in a pragmatic cluster-randomised controlled trial with a baseline measurement and follow-up measurements after 4 and 12 months. The population will consist of 46 practice nurses and their type 2 diabetes patients (N = 460; 10 per practice nurse). The practice nurses will be randomly assigned to the intervention or control group. Practice nurses of the intervention group will receive SMS training. Patients for the intervention and control groups will be recruited by a researcher-led self-administered screening procedure to decide which patients of those scheduled for routine consultation are likely to be detected by the practice nurses as eligible for the self-management support. Primary outcome measure is patients’ daily functioning. Secondary measures include emotional well-being, participation, autonomy and control over the disease.
Discussion
Our hybrid study design is complicated by the detection method used by the practice nurses. This method is an implementation issue in itself that has consequences for the realisation and power of the effect evaluation.
Trial registration
Current Controlled Trials, NTR2764
doi:10.1186/1471-2296-14-77
PMCID: PMC3699365  PMID: 23758974
Hybrid Effectiveness–Implementation Design; Primary Care; Chronic Disease; Psychosocial Problems; Self-Management; Practice Nurse
5.  Diagnosis of somatisation: effect of an educational intervention in a cluster randomised controlled trial. 
BACKGROUND: Somatisation is highly prevalent in primary care (present in 25% of visiting patients) but often goes unrecognised. Non-recognition may lead to ineffective treatment, risk of iatrogenic harm, and excessive use of healthcare services. AIM: To examine the effect of training on diagnosis of somatisation in routine clinical practice by general practitioners (GPs). DESIGN OF STUDY: Cluster randomised controlled trial, with practices as the randomisation unit. SETTING: Twenty-seven general practices (with a total of 43 GPs) in Vejle County, Denmark. METHOD: Intervention consisted of a multifaceted training programme (the TERM [The Extended Reattribution and Management] model). Patients were enrolled consecutively over a period of 13 working days. Psychiatric morbidity was assessed by means of a screening questionnaire. GPs categorised their diagnoses in another questionnaire. The primary outcome was GP diagnosis of somatisation and agreement with the screening questionnaire. RESULTS: GPs diagnosed somatisation less frequently than had previously been observed, but there was substantial variation between GPs. The difference between groups in the number of diagnoses of somatisation failed to reach the 5% significance (P = 0.094). However, the rate of diagnoses of medically unexplained physical symptoms was twice as high in the intervention group as in the control group (7.7% and 3.9%, respectively, P = 0.007). Examination of the agreement between GPs' diagnoses and the screening questionnaire revealed no significant difference between groups. CONCLUSION: Brief training increased GPs' awareness of medically unexplained physical symptoms. Diagnostic accuracy according to a screening questionnaire remained unaffected but was difficult to evaluate, as there is no agreement on a gold standard for somatisation in general practice.
PMCID: PMC1314743  PMID: 14960214
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.  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
8.  Medically unexplained symptoms in young people: The doctor’s dilemma 
Paediatrics & Child Health  2008;13(6):487-491.
Medically unexplained symptoms in young people can present a challenge for primary care physicians to manage. Despite the prevalence of this clinical problem, physicians feel ill-equipped to deal with it. Families may attribute symptoms to an organic cause, despite the absence of identified pathology, and often resist considering psychosocial contributing factors. The present article outlines the key principles in the management of medically unexplained symptoms. Treatment focuses on building a therapeutic alliance with the patient and the family, the use of psychotherapeutic interventions and the role of psychopharmacology. A family-oriented rehabilitative approach to care, with a focus on functional improvement rather than symptom reduction, is emphasized.
PMCID: PMC2532910  PMID: 19436430
Medically unexplained; Paediatric management; Symptoms
9.  Questionnaire severity measures for depression: a threat to the doctor–patient relationship? 
Background
Since 2006 the Quality Outcomes Framework (QOF) has rewarded GPs for carrying out standardised assessments of the severity of symptoms of depression in newly diagnosed patients.
Aim
To gain understanding of GPs' opinions and perceived impact on practice of the routine introduction of standardised questionnaire measures of severity of depression through the UK general practice contract QOF.
Design of study
Semi-structured qualitative interview study, with purposive sampling and constant comparative analysis.
Setting
Thirty-four GPs from among 38 study general practices in three sites in England, UK: Southampton, Liverpool, and Norfolk.
Method
GPs were interviewed at a time convenient to them by trained interviewers. Interviews were audiorecorded and transcribed verbatim in preparation for thematic analysis, to identify key views.
Results
Analysis of the interviews suggested that the use of severity questionnaires posed an intrusion into the consultation. GPs discursively polarised two technologies: formal assessment versus personal enquiry, emphasising the need to ensure the scores are used sensitively and as an aid to clinical judgement rather than as a substitute. Importantly, these challenges implicitly served a function of preserving GPs' identities as professionals with expertise, constructed as integral to the process of diagnosis.
Conclusion
GP accounts indicated concern about threats to patient care. Contention between using severity questionnaires and delivering individualised patient care is significantly motivated by GP concerns to preserve professional expertise and identity. It is important to learn from GP concerns to help establish how best to optimise the use of severity questionnaires in depression.
doi:10.3399/bjgp11X556236
PMCID: PMC3026150  PMID: 21276338
depression; diagnosis; general practice
10.  Doctors’ and nurses’ views on patient care for type 2 diabetes: an interview study in primary health care in Oman 
Aim
This study aimed at exploring the experiences of primary health-care providers of their encounters with patients with type 2 diabetes, and their preferences and suggestions for future improvement of diabetes care.
Background
Barriers to good diabetes care could be related to problems from health-care providers’ side, patients’ side or the health-care system of the country. Treatment of patients with type 2 diabetes has become a huge challenge in Oman, where the prevalence has increased to high levels.
Method
Semi-structured interviews were conducted with 26 health-care professionals, 19 doctors and seven nurses, who worked in primary health care in Oman. Qualitative content analysis was applied.
Findings
Organizational barriers and barriers related to patients and health-care providers were identified. These included workload and lack of teamwork approach. Poor patients’ management adherence and influence of culture on their attitudes towards illness were identified. From the providers’ side, language barriers, providers’ frustration and aggressive attitudes towards the patients were reflected. Decreasing the workload, availability of competent teams with diabetes specialist nurses and continuity of care were suggested. Furthermore, changing professional behaviours towards a more patient-centred approach and need for health education to the patients, especially on self-management, were addressed. Appropriate training for health-care providers in communication skills with emphasis on self-care education and individualization of care according to each patient's needs are important for improvement of diabetes care in Oman.
doi:10.1017/S146342361200062X
PMCID: PMC3682753  PMID: 23259934
culture; Oman; patient–provider interaction; professional behaviour; qualitative content analysis
11.  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
12.  "I really should've gone to the doctor": older adults and family caregivers describe their experiences with community-acquired pneumonia 
BMC Family Practice  2006;7:30.
Background
Responding to acute illness symptoms can often be challenging for older adults. The primary objective of this study was to describe how community-dwelling older adults and their family members responded to symptoms of community-acquired pneumonia (CAP).
Methods
A qualitative study that used face-to-face semi-structured interviews to collect data from a purposeful sample of seniors aged 60+ and their family members living in a mid-sized Canadian city. Data analysis began with descriptive and interpretive coding, then advanced as the research team repeatedly compared emerging thematic categories to the raw data. Searches for disconfirming evidence and member checking through focus groups provided additional data and helped ensure rigour.
Results
Community-acquired pneumonia symptoms varied greatly among older adults, making decisions to seek care difficult for them and their family members. Both groups took varying amounts of time as they attempted to sort out what was wrong and then determine how best to respond. Even after they concluded something was wrong, older adults with confirmed pneumonia continued to wait for days, to over a week, before seeking medical care. Participants provided diverse reasons for this delay, including fear, social obligations (work, family, leisure), and accessibility barriers (time, place, systemic). Several older adults and family members regretted their delays in seeking help.
Conclusion
Treatment-seeking delay is a variable, multi-phased decision-making process that incorporates symptom assessment plus psychosocial and situational factors. Public health and health care professionals need to educate older adults about the potential causes and consequences of unnecessary waits. Such efforts may reduce the severity of community-acquired pneumonia upon presentation at clinics and hospitals, and that, in turn, could potentially improve health outcomes.
doi:10.1186/1471-2296-7-30
PMCID: PMC1468411  PMID: 16677391
13.  Barriers to Initiating Depression Treatment in Primary Care Practice 
OBJECTIVE AND DESIGN
This study used qualitative and quantitative methods to examine the reasons primary care physicians and nurses offered for their inability to initiate guideline-concordant acute-phase care for patients with current major depression.
PARTICIPANTS AND SETTING
Two hundred thirty-nine patients with 5 or more symptoms of depression seeing 12 physicians in 6 primary care practices were randomized to the intervention arm of a trial of the effectiveness of depression treatment. Sixty-six (27.6%) patients identified as failing to meet criteria for guideline-concordant treatment 8 weeks following the index visit were the focus of this analysis.
METHODS
The research team interviewed the 12 physicians and 6 nurse care managers to explore the major reasons depressed patients fail to receive guideline-concordant acute-phase care. This information was used to develop a checklist of barriers to depression care. The 12 physicians then completed the checklist for each of the 64 patients for whom he or she was the primary care provider. Physicians chose which barriers they felt applied to each patient and weighted the importance of the barrier by assigning a total of 100 points for each patient. Cluster analysis of barrier scores identified naturally occurring groups of patients with common barrier profiles.
RESULTS
The cluster analysis produced a 5-cluster solution with profiles characterized by patient resistance (19 patients, 30.6%), patient noncompliance with visits (15 patients, 24.2%), physician judgment overruled the guideline (12 patients, 19.3%), patient psychosocial burden (8 patients, 12.9%), and health care system problems (8 patients, 12.9%). The physicians assigned 4,707 (75.9%) of the 6,200 weighting points to patient-centered barriers. Physician-centered barriers accounted for 927 (15.0%) and system barriers accounted for 566 (9.1%) of weighting points. Twenty-eight percent of the patients not initiating guideline-concordant acute-stage care went on to receive additional care and met criteria for remission at 6 months, with no statistical difference across the 5 patient clusters.
CONCLUSIONS
Current interventions fail to address barriers to initiating guideline-concordant acute-stage care faced by more than a quarter of depressed primary care patients. Physicians feel that barriers arise most frequently from factors centered with the patients, their psychosocial circumstances, and their attitudes and beliefs about depression and its care. Physicians less frequently make judgments that overrule the guidelines, but do so when patients have complex illness patterns. Further descriptive and experimental studies are needed to confirm and further examine barriers to depression care. Because few untreated patients improve without acute-stage care, additional work is also needed to develop new intervention components that address these barriers.
doi:10.1046/j.1525-1497.2002.10128.x
PMCID: PMC1495010  PMID: 11841525
primary health care; depression; guidelines; family physicians
14.  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
15.  Patients’ views on changes in doctor-patient communication between 1982 and 2001: a mixed-methods study 
BMC Family Practice  2012;13:80.
Background
Doctor-patient communication has been influenced over time by factors such as the rise of evidence-based medicine and a growing emphasis on patient-centred care. Despite disputes in the literature on the tension between evidence-based medicine and patient-centered medicine, patients’ views on what constitutes high quality of doctor-patient communication are seldom an explicit topic for research. The aim of this study is to examine whether analogue patients (lay people judging videotaped consultations) perceive shifts in the quality of doctor-patient communication over a twenty-year period.
Methods
Analogue patients (N = 108) assessed 189 videotaped general practice consultations from two periods (1982–1984 and 2000–2001). They provided ratings on three dimensions (scale 1–10) and gave written feedback. With a mixed-methods research design, we examined these assessments quantitatively (in relation to observed communication coded with RIAS) and qualitatively.
Results
1) The quantitative analyses showed that biomedical communication and rapport building were positively associated with the quality assessments of videotaped consultations from the first period, but not from the second. Psychosocial communication and personal remarks were related to positive quality assessments of both periods; 2) the qualitative analyses showed that in both periods, participants provided the same balance between positive and negative comments. Listening, giving support, and showing respect were considered equally important in both periods. We identified shifts in the participants’ observations on how GPs explained things to the patient, the division of roles and responsibilities, and the emphasis on problem-focused communication (first period) versus solution-focused communication (last period).
Conclusion
Analogue patients recognize shifts in the quality of doctor-patient communication from two different periods, including a shift from problem-focused communication to solution-focused communication, and they value an egalitarian doctor-patient relationship. The two research methods were complementary; based on the quantitative analyses we found shifts in communication, which we confirmed and specified in our qualitative analyses.
doi:10.1186/1471-2296-13-80
PMCID: PMC3460773  PMID: 22873783
Quality of care; Doctor-patient communication; Analogue patients; General practice; Video observation; Mixed-methods design
16.  Effectiveness of a cognitive behavioral intervention in patients with medically unexplained symptoms: cluster randomized trial 
BMC Family Practice  2012;13:35.
Background
Medically unexplained symptoms are an important mental health problem in primary care and generate a high cost in health services.
Cognitive behavioral therapy and psychodynamic therapy have proven effective in these patients. However, there are few studies on the effectiveness of psychosocial interventions by primary health care. The project aims to determine whether a cognitive-behavioral group intervention in patients with medically unexplained symptoms, is more effective than routine clinical practice to improve the quality of life measured by the SF-12 questionary at 12 month.
Methods/design
This study involves a community based cluster randomized trial in primary healthcare centres in Madrid (Spain). The number of patients required is 242 (121 in each arm), all between 18 and 65 of age with medically unexplained symptoms that had seeked medical attention in primary care at least 10 times during the previous year. The main outcome variable is the quality of life measured by the SF-12 questionnaire on Mental Healthcare. Secondary outcome variables include number of consultations, number of drug (prescriptions) and number of days of sick leave together with other prognosis and descriptive variables. Main effectiveness will be analyzed by comparing the percentage of patients that improve at least 4 points on the SF-12 questionnaire between intervention and control groups at 12 months. All statistical tests will be performed with intention to treat. Logistic regression with random effects will be used to adjust for prognostic factors. Confounding factors or factors that might alter the effect recorded will be taken into account in this analysis.
Discussion
This study aims to provide more insight to address medically unexplained symptoms, highly prevalent in primary care, from a quantitative methodology. It involves intervention group conducted by previously trained nursing staff to diminish the progression to the chronicity of the symptoms, improve quality of life, and reduce frequency of medical consultations.
Trial registration
The trial was registered with ClinicalTrials.gov, number NCT01484223 [ http://ClinicalTrials.gov].
doi:10.1186/1471-2296-13-35
PMCID: PMC3515424  PMID: 22551252
17.  Facilitators and barriers for GP–patient communication in palliative care: a qualitative study among GPs, patients, and end-of-life consultants 
The British Journal of General Practice  2011;61(585):e167-e172.
Background
Effective communication is considered to be essential for the delivery of high-quality care. Communication in palliative care may be particularly difficult, and there is still no accepted set of communication skills for GPs in providing palliative care.
Aim
To obtain detailed information on facilitators and barriers for GP–patient communication in palliative care, with the aim to develop training programmes that enable GPs to improve their palliative care communication skills.
Design of study
Qualitative study with focus groups, interviews, and questionnaires.
Setting
GPs with patients receiving palliative care at home, and end-of-life consultants in the Netherlands.
Method
GP (n = 20) focus groups discussing facilitators and barriers, palliative care patient (n = 6) interviews regarding facilitators, and end-of-life consultant (n = 22) questionnaires concerning barriers.
Results
Facilitators reported by both GPs and patients were accessibility, taking time, commitment, and listening carefully. GPs emphasise respect, while patients want GPs to behave in a friendly way, and to take the initiative to discuss end-of-life issues. Barriers reported by both GPs and end-of-life consultants were: difficulty in dealing with former doctors' delay and strong demands from patients' relatives. GPs report difficulty in dealing with strong emotions and troublesome doctor–patient relationships, while consultants report insufficient clarification of patients' problems, promises that could not be kept, helplessness, too close involvement, and insufficient anticipation of various scenarios.
Conclusion
The study findings suggest that the quality of GP–patient communication in palliative care in the Netherlands can be improved. It is recommended that specific communication training programmes for GPs should be developed and evaluated.
doi:10.3399/bjgp11X567081
PMCID: PMC3063045  PMID: 21439174
communication; palliative care; physicians, family; physician–patient relationship; qualitative research
18.  Results of a psychosomatic training program in China, Vietnam and Laos: successful cross-cultural transfer of a postgraduate training program for medical doctors 
Background
With the “ASIA-LINK” program, the European Community has supported the development and implementation of a curriculum of postgraduate psychosomatic training for medical doctors in China, Vietnam and Laos. Currently, these three countries are undergoing great social, economic and cultural changes. The associated psychosocial stress has led to increases in psychological and psychosomatic problems, as well as disorders for which no adequate medical or psychological care is available, even in cities. Health care in these three countries is characterized by the coexistence of Western medicine and traditional medicine. Psychological and psychosomatic disorders and problems are insufficiently recognized and treated, and there is a need for biopsychosocially orientated medical care. Little is known about the transferability of Western-oriented psychosomatic training programs in the Southeast Asian cultural context.
Methods
The curriculum was developed and implemented in three steps: 1) an experimental phase to build a future teacher group; 2) a joint training program for future teachers and German teachers; and 3) training by Asian trainers that was supervised by German teachers. The didactic elements included live patient interviews, lectures, communication skills training and Balint groups. The training was evaluated using questionnaires for the participants and interviews of the German teachers and the future teachers.
Results
Regional training centers were formed in China (Shanghai), Vietnam (Ho Chi Minh City and Hue) and Laos (Vientiane). A total of 200 physicians completed the training, and 30 physicians acquired the status of future teacher. The acceptance of the training was high, and feelings of competence increased during the courses. The interactive training methods were greatly appreciated, with the skills training and self-experience ranked as the most important topics. Adaptations to the cultural background of the participants were necessary for the topics of “breaking bad news,” the handling of negative emotions, discontinuities in participation, the hierarchical doctor-patient relationship, culture-specific syndromes and language barriers. In addition to practical skills for daily clinical practice, the participants wanted to learn more about didactic teaching methods. Half a year after the completion of the training program, the participants stated that the program had a great impact on their daily medical practice.
Conclusions
The training in psychosomatic medicine for postgraduate medical doctors resulted in a positive response and is an important step in addressing the barriers in providing psychosomatic primary care. The transferability of western concepts should be tested locally, and adaptations should be undertaken where necessary. The revised curriculum forms the basis of training in psychosomatic medicine and psychotherapy for medical students and postgraduate doctors in China, Vietnam and Laos.
doi:10.1186/1751-0759-6-17
PMCID: PMC3546304  PMID: 22929520
Psychosomatic medicine; Curriculum; Teaching of teachers; China; Vietnam; Laos
19.  Doctor's perception of doctor-patient relationships in emergency departments: What roles do gender and ethnicity play? 
Background
Emergency departments continuously provide medical treatment on a walk-in basis. Several studies investigated the patient's perception of the doctor-patient relationship, but few have asked doctors about their views. Furthermore, the influence of the patient's ethnicity and gender on the doctor's perception remains largely unanswered.
Methods
Based on data collated in three gynaecology (GYN)/internal medicine (INT) emergency departments in Berlin, Germany, we evaluated the impact of the patient's gender and ethnicity on the doctors' satisfaction with the course of the treatment they provided. Information was gathered from 2.429 short questionnaires completed by doctors and the medical records of the corresponding patients.
Results
The patient's ethnicity had a significant impact on the doctors' satisfaction with the doctor-patient relationship. Logistic regression analysis showed that the odds ratio (OR) for physician satisfaction was significantly lower for patients of Turkish origin (OR = 2.6 INT and 5.5 GYN) than for those of German origin. The main reasons stated were problems with communication and a perceived lack of urgency for emergency treatment. The odds ratios for dissatisfaction due to a lack of language skills were 4.48 (INT) and 6.22 (GYN), and those due to perceived lack of urgency for emergency treatment were 0.75 (INT) and 0.63 (GYN). Sex differences caused minor variation.
Conclusion
The results show that good communication despite language barriers is crucial in providing medical care that is satisfactory to both patient and doctors, especially in emergency situations. Therefore the use of professional interpreters for improved communication and the training of medical staff for improved intercultural competence are essential for the provision of adequate health care in a multicultural setting.
doi:10.1186/1472-6963-8-82
PMCID: PMC2329628  PMID: 18405351
20.  Do doctors and patients agree on cardiovascular-risk management recommendations post-consultation? The INTERMEDE study 
The British Journal of General Practice  2011;61(584):e105-e111.
Background
Understanding interactions between patients and GPs may be important for optimising communication during consultations and improving health promotion, notably in the management of cardiovascular risk factors.
Aim
To explore the agreement between physicians and patients on the management of cardiovascular risk factors, and whether potential disagreement is linked to the patient's educational level.
Design of study
INTERMEDE is a cross-sectional study with data collection occurring at GPs' offices over a 2-week period in October 2007 in France.
Method
Data were collected from both patients and doctors respectively via pre- and post-consultation questionnaires that were ‘mirrored’, meaning that GPs and patients were presented with the same questions.
Results
The sample consisted of 585 eligible patients (61% females) and 27 GPs. Agreement between patients and GPs was better for tangible aspects of the consultation, such as measuring blood pressure (κ = 0.84, standard deviation [SD] = 0.04), compared to abstract elements, like advising the patient on nutrition (κ = 0.36, SD = 0.04), and on exercise (κ = 0.56, SD = 0.04). Patients' age was closely related to level of education: half of those without any qualification were older than 65 years. The statistical association between education and agreement between physicians and patients disappeared after adjustment for age, but a trend remained.
Conclusion
This study reveals misunderstandings between patients and GPs on the content of the consultation, especially for health-promotion outcomes. Taking patients' social characteristics into account, notably age and educational level, could improve mutual understanding between patients and GPs, and therefore, the quality of care.
doi:10.3399/bjgp11X561159
PMCID: PMC3047342  PMID: 21375892
cardiovascular diseases; communication; counselling; healthcare disparities; education; patients; physician–patient relations; physicians; socioeconomic factors
21.  Psychosocial Factors That Shape Patient and Carer Experiences of Dementia Diagnosis and Treatment: A Systematic Review of Qualitative Studies 
PLoS Medicine  2012;9(10):e1001331.
A systematic review of qualitative studies conducted by Frances Bunn and colleagues identifies and describes the experiences of patients and caregivers on receiving and adapting to a diagnosis of dementia.
Background
Early diagnosis and intervention for people with dementia is increasingly considered a priority, but practitioners are concerned with the effects of earlier diagnosis and interventions on patients and caregivers. This systematic review evaluates the qualitative evidence about how people accommodate and adapt to the diagnosis of dementia and its immediate consequences, to guide practice.
Methods and Findings
We systematically reviewed qualitative studies exploring experiences of community-dwelling individuals with dementia, and their carers, around diagnosis and the transition to becoming a person with dementia. We searched PubMed, PsychINFO, Embase, CINAHL, and the British Nursing Index (all searched in May 2010 with no date restrictions; PubMed search updated in February 2012), checked reference lists, and undertook citation searches in PubMed and Google Scholar (ongoing to September 2011). We used thematic synthesis to identify key themes, commonalities, barriers to earlier diagnosis, and support identified as helpful. We identified 126 papers reporting 102 studies including a total of 3,095 participants. Three overarching themes emerged from our analysis: (1) pathways through diagnosis, including its impact on identity, roles, and relationships; (2) resolving conflicts to accommodate a diagnosis, including the acceptability of support, focusing on the present or the future, and the use or avoidance of knowledge; and (3) strategies and support to minimise the impact of dementia. Consistent barriers to diagnosis include stigma, normalisation of symptoms, and lack of knowledge. Studies report a lack of specialist support particularly post-diagnosis.
Conclusions
There is an extensive body of qualitative literature on the experiences of community-dwelling individuals with dementia on receiving and adapting to a diagnosis of dementia. We present a thematic analysis that could be useful to professionals working with people with dementia. We suggest that research emphasis should shift towards the development and evaluation of interventions, particularly those providing support after diagnosis.
Please see later in the article for the Editors' Summary.
Editors' Summary
Background
Dementia is a decline in mental ability severe enough to interfere with daily life. Alzheimer disease is the most common type of dementia. People with dementia usually have problems with two or more cognitive functions—thinking, language, memory, understanding, and judgment. Dementia is rare before the age of 65, but about a quarter of people over 85 have dementia. Because more people live longer these days, the number of patients with dementia is increasing. It is estimated that today between 40 and 50 million people live with dementia worldwide. By 2050, this number is expected to triple.
One way to study what dementia means to patients and their carers (most often spouses or other family members) is through qualitative research. Qualitative research aims to develop an in-depth understanding of individuals' experiences and behavior, as well as the reasons for their feelings and actions. In qualitative studies, researchers interview patients, their families, and doctors. When the studies are published, they usually contain direct quotations from interviews as well as summaries by the scientists who designed the interviews and analyzed the responses.
Why Was This Study Done?
This study was done to better understand the experiences and attitudes of patients and their carers surrounding dementia diagnosis. It focused on patients who lived and were cared for within the community (as opposed to people living in senior care facilities or other institutions). Most cases of dementia are progressive, meaning symptoms get worse over time. Diagnosis often happens at an advanced stage of the disease, and some patients never receive a formal diagnosis. This could have many possible reasons, including unawareness or denial of symptoms by patients and people close to them. The study was also trying to understand barriers to early diagnosis and what type of support is useful for newly diagnosed patients and carers.
What Did the Researchers Do and Find?
The researchers conducted a systematic search for published qualitative research studies that reported on the experience, beliefs, feelings, and attitudes surrounding dementia diagnosis. They identified and reviewed 102 such studies. Among the quotations and summaries of the individual studies, they looked for prominent and recurring themes. They also compared and contrasted the respective experiences of patients and carers.
Overall, they found that the complexity and variety of responses to a diagnosis of dementia means that making the diagnosis and conveying it to patients and carers is challenging. Negative connotations associated with dementia, inconsistent symptoms, and not knowing enough about the signs and symptoms were commonly reported barriers to early dementia diagnosis. It was often the carer who initiated the search for help from a doctor, and among patients, willingness and readiness to receive a diagnosis varied. Being told one had dementia had a big impact on a patient's identity and often caused feelings of loss, anger, fear, and frustration. Spouses had to adjust to increasingly unequal relationships and the transition to a role as carer. The strain associated with this often caused health problems in the carers as well. On the other hand, studies examining the experience of couples often reported that they found ways to continue working together as a team.
Adjusting to a dementia diagnosis is a complex process. Initially, most patients and carers experienced conflicts, for example, between autonomy and safety, between recognizing the need for help but reluctance to accept it, or between living in the present and dealing with anxiety about and preparing for the future. As these were resolved and as the disease progressed, the attitudes of patients and carers towards dementia often became more balanced and accepting. Many patients and their families adopted strategies to cope with the impact of dementia on their lives in order to manage the disease and maintain some sort of normal life. These included practical strategies involving reminders, social strategies such as relying on family support, and emotional strategies such as using humor. At some point many patients and carers reported that they were able to adopt positive mindsets and incorporate dementia in their lives.
The studies also pointed to an urgent need for support from outside the family, both right after diagnosis and subsequently. General practitioners and family physicians have important roles in helping patients and carers to get access to information, social and psychological support, and community care. The need for information was reported to be ongoing and varied, and meeting it required a variety of sources and formats. Key needs for patients and carers mentioned in the studies include information on financial aids and entitlements early on, and continued access to supportive professionals and specialists.
What Do These Findings Mean?
Qualitative studies to date on how patients and carers respond to a diagnosis of dementia provide a fairly detailed picture of their experiences. The summary provided here should help professionals to understand better the challenges patients and carers face around the time of diagnosis as well as their immediate and evolving needs. The results also suggest that future research should focus on the development and evaluation of ways to meet those needs.
Additional Information
Please access these websites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001331.
Wikipedia has pages on dementia and qualitative research (note that Wikipedia is a free online encyclopedia that anyone can edit)
Alzheimer Europe, an umbrella organization of 34 Alzheimer associations from 30 countries across Europe, has a page on the different approaches to research
The UK Department of Health has pages on dementia, including guidelines for carers of people with dementia
MedlinePlus also has information about dementia
doi:10.1371/journal.pmed.1001331
PMCID: PMC3484131  PMID: 23118618
22.  Does burnout among doctors affect their involvement in patients' mental health problems? A study of videotaped consultations 
BMC Family Practice  2009;10:60.
Background
General practitioners' (GPs') feelings of burnout or dissatisfaction may affect their patient care negatively, but it is unknown if these negative feelings also affect their mental health care. GPs' available time, together with specific communication tools, are important conditions for providing mental health care. We investigated if GPs who feel burnt out or dissatisfied with the time available for their patients, are less inclined to encourage their patients to disclose their distress, and have shorter consultations, in order to gain time and energy. This may result in less psychological evaluations of patients' complaints.
Methods
We used 1890 videotaped consultations from a nationally representative sample of 126 Dutch GPs to analyse GPs' communication and the duration of their consultations. Burnout was subdivided into emotional exhaustion, depersonalisation and reduced accomplishment. Multilevel regression analyses were used to investigate which subgroups of GPs differed significantly.
Results
GPs with feelings of exhaustion or dissatisfaction with the available time have longer consultations compared to GPs without these feelings. Exhausted GPs, and GPs with feelings of depersonalisation, talk more about psychological or social topics in their consultations. GPs with feelings of reduced accomplishment are an exception: they communicate less affectively, are less patient-centred and have less eye contact with their patients compared to GPs without reduced accomplishment.
We found no relationship between GPs' feelings of burnout or dissatisfaction with the available time and their psychological evaluations of patients' problems.
Conclusion
GPs' feelings of burnout or dissatisfaction with the time available for their patients do not obstruct their diagnosis and awareness of patients' psychological problems. On the contrary, GPs with high levels of exhaustion or depersonalisation, and GPs who are dissatisfied with the available time, sometimes provide more opportunities to discuss mental health problems. This increases the chance that appropriate care will be found for patients with mental health problems. On the other hand, these GPs are themselves more likely to retire, or risk burnout, because of their dissatisfaction. Therefore these GPs may benefit from training or personal coaching to decrease the chance that the process of burnout will get out of hand.
doi:10.1186/1471-2296-10-60
PMCID: PMC2754435  PMID: 19706200
23.  Do longer consultations improve the management of psychological problems in general practice? A systematic literature review 
Background
Psychological problems present a huge burden of illness in our community and GPs are the main providers of care. There is evidence that longer consultations in general practice are associated with improved quality of care; but this needs to be balanced against the fact that doctor time is a limited resource and longer consultations may lead to reduced access to health care.
The aim of this research was to conduct a systematic literature review to determine whether management of psychological problems in general practice is associated with an increased consultation length and to explore whether longer consultations are associated with better health outcomes for patients with psychological problems.
Methods
A search was conducted on Medline (Ovid) databases up to7 June 2006. The following search terms, were used:
general practice or primary health care (free text) or family practice (MeSH)
AND consultation length or duration (free text) or time factors (MeSH)
AND depression or psychological problems or depressed (free text).
A similar search was done in Web of Science, Pubmed, Google Scholar, and Cochrane Library and no other papers were found.
Studies were included if they contained data comparing consultation length and management or detection of psychological problems in a general practice or primary health care setting. The studies were read and categories developed to enable systematic data extraction and synthesis.
Results
29 papers met the inclusion criteria. Consultations with a recorded diagnosis of a psychological problem were reported to be longer than those with no recorded psychological diagnosis. It is not clear if this is related to the extra time or the consultation style. GPs reported that time pressure is a major barrier to treating depression. There was some evidence that increased consultation length is associated with more accurate diagnosis of psychological problems.
Conclusion
Further research is needed to elucidate the factors in longer consultations that are associated with greater detection of psychological problems, and to determine the association between the detection of psychological problems and the attitude, gender, age or training of the GP and the age, gender and socioeconomic status of the patient. These are important considerations if general practice is to deal more effectively with people with psychological problems.
doi:10.1186/1472-6963-7-71
PMCID: PMC1890290  PMID: 17506904
24.  A qualitative study on the role of cultural background in patients' perspectives on rehabilitation 
Background
Low back pain (LBP) is one of the major concerns in health care. In Switzerland, musculoskeletal problems represent the third largest illness group with 9.4 million consultations per year. The return to work rate is increased by an active treatment program and saves societal costs. However, results after rehabilitation are generally poorer in patients with a Southeast European cultural background than in other patients. This qualitative research about the rehabilitation of patients with LBP and a Southeast European cultural background, therefore, explores possible barriers to successful rehabilitation.
Methods
We used a triangulation of methods combining three qualitative methods of data collection: 13 semi-structured in-depth interviews with patients who have a Southeast European cultural background and live in Switzerland, five semi-structured in-depth interviews and two focus groups with health professionals, and a literature review. Between June and December 2008, we recruited participants at a Rehabilitation Centre in the German-speaking part of Switzerland.
Results
To cope with pain, patients prefer passive strategies, which are not in line with recommended coping strategies. Moreover, the families of patients tend to support passive behaviour and reduce the autonomy of patients. Health professionals and researchers propagate active strategies including activity in the presence of pain, yet patients do not consider psychological factors contributing to LBP. The views of physicians and health professionals are in line with research evidence demonstrating the importance of psychosocial factors for LBP. Treatment goals focusing on increasing daily activities and return to work are not well understood by patients partly due to communication problems, which is something that patients and health professionals are aware of. Additional barriers to returning to work are caused by poor job satisfaction and other work-related factors.
Conclusions
LBP rehabilitation can be improved by addressing the following points. Early management of LBP should be activity-centred instead of pain-centred. It is mandatory to implement return to work management early, including return to adapted work, to improve rehabilitation for patients. Rehabilitation has to start when patients have been off work for three months. Using interpreters more frequently would improve communication between health professionals and patients, and reduce misunderstandings about treatment procedures. Special emphasis must be put on the process of goal-formulation by spending more time with patients in order to identify barriers to goal attainment. Information on the return to work process should also include the financial aspects of unemployment and disability.
doi:10.1186/1471-2474-13-5
PMCID: PMC3398320  PMID: 22269636
25.  “Did I Do as Best as the System Would Let Me?” Healthcare Professional Views on Hospital to Home Care Transitions 
Journal of General Internal Medicine  2012;27(12):1649-1656.
ABSTRACT
BACKGROUND
Patients are vulnerable to poor quality, fragmented care as they transition from hospital to home. Few studies examine the discharge process from the perspectives of multiple healthcare professionals.
OBJECTIVE
To understand care transitions from the perspective of diverse healthcare professionals, and identify recommendations for process improvement.
DESIGN
Cross sectional qualitative study.
PARTICIPANTS AND SETTING
Clinicians, care teams, and administrators from the inpatient general medicine services at one urban, academic hospital; two outpatient primary care clinics; and one Medicaid managed care plan.
APPROACH
We conducted 13 focus groups and two in-depth interviews with participants prior to initiating a hospital-funded, multi-component transitional care intervention for uninsured and low-income publicly insured patients, the Care Transitions Innovation (C-TraIn). We used thematic analysis to identify emergent themes and a cross-case comparative analysis to describe variation by participant role and setting.
KEY RESULTS
Poor transitional care reflected healthcare system fragmentation, limiting the ability of healthcare professionals to provide optimal patient care. Lack of standardized processes, poor multidisciplinary communication within the hospital, and fragmented communication across settings led to chaotic, unsystematic transitions, poor patient outcomes, and feelings of futility and dissatisfaction among providers. Patients with complex psychosocial needs were especially vulnerable during care transitions. Recommended changes to improve transitional care included improving hospital multidisciplinary hospital rounds, clarifying accountability as patients move across settings, standardizing discharge processes, and providing additional medical staff training.
CONCLUSIONS
Hospital to home care transitions are critical junctures that can impact health outcomes, experience of care, and costs. Transitional care quality improvement initiatives must address system fragmentation, reduce communication barriers within and between settings, and ensure adequate professional training.
doi:10.1007/s11606-012-2169-3
PMCID: PMC3509297  PMID: 22829294
transition and discharge planning; continuity of care; communication; quality improvement

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