PMCC PMCC

Search tips
Search criteria

Advanced
Results 1-25 (1121960)

Clipboard (0)
None

Related Articles

1.  Economic hardship associated with managing chronic illness: a qualitative inquiry 
Background
Chronic illness and disability can have damaging, even catastrophic, socioeconomic effects on individuals and their households. We examined the experiences of people affected by chronic heart failure, complicated diabetes and chronic obstructive pulmonary disease to inform patient centred policy development. This paper provides a first level, qualitative understanding of the economic impact of chronic illness.
Methods
Interviews were conducted with patients aged between 45 and 85 years who had one or more of the index conditions and family carers from the Australian Capital Territory and Western Sydney, Australia (n = 66). Content analysis guided the interpretation of data.
Results
The affordability of medical treatments and care required to manage illness were identified as the key aspects of economic hardship, which compromised patients' capacity to proactively engage in self-management and risk reduction behaviours. Factors exacerbating hardship included ineligibility for government support, co-morbidity, health service flexibility, and health literacy. Participants who were on multiple medications, from culturally and linguistically diverse or Indigenous backgrounds, and/or not in paid employment, experienced economic hardship more harshly and their management of chronic illness was jeopardised as a consequence. Economic hardship was felt among not only those ineligible for government financial supports but also those receiving subsidies that were insufficient to meet the costs of managing long-term illness over and above necessary daily living expenses.
Conclusion
This research provides insights into the economic stressors associated with managing chronic illness, demonstrating that economic hardship requires households to make difficult decisions between care and basic living expenses. These decisions may cause less than optimal health outcomes and increased costs to the health system. The findings support the necessity of a critical analysis of health, social and welfare policies to identify cross-sectoral strategies to alleviate such hardship and improve the affordability of managing chronic conditions. In a climate of global economic instability, research into the economic impact of chronic illness on individuals' health and well-being and their disease management capacity, such as this study, provides timely evidence to inform policy development.
doi:10.1186/1472-6963-9-182
PMCID: PMC2766369  PMID: 19818128
2.  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
3.  A patient-centred approach to health service delivery: improving health outcomes for people with chronic illness 
Background
The Wagner Model provides a framework that can help to facilitate health system transition towards a chronic care oriented model. Drawing on elements of this framework as well as health policy related to patient centred care, we describe the health needs of patients with chronic illness and compare these with services which should ideally be provided by a patient-centred health system. This paper aims to increase understanding of the challenges faced by chronically ill patients and family carers in relation to their experiences with the health care system and health service providers.
Method
We interviewed patients, carers and health care professionals (HCPs) about the challenges faced by people living with complicated diabetes, chronic heart failure or chronic obstructive pulmonary disease.
Results
Patients indicated that they had a range of concerns related to the quality of health care encounters with health care professionals (HCPs), with these concerns being expressed as needs or wants. These included: 1) the need for improved communication and information delivery on the part of HCPs; 2) well organised health services and reduced waiting times to see HCPs; 3) help with self care; 4) greater recognition among professionals of the need for holistic and continuing care; and 5) inclusion of patients and carers in the decision making processes.
Conclusions
In order to address the challenges faced by people with chronic illness, health policy must be more closely aligned with the identified needs and wants of people affected by chronic illness than is currently the case.
doi:10.1186/1472-6963-13-251
PMCID: PMC3706210  PMID: 23819721
4.  Living and dying with severe chronic obstructive pulmonary disease: multi-perspective longitudinal qualitative study 
Objectives To understand the perspectives of people with severe chronic obstructive pulmonary disease (COPD) as their illness progresses, and of their informal and professional carers, to inform provision of care for people living and dying with COPD.
Design Up to four serial qualitative interviews were conducted with each patient and nominated carer over 18 months. Interviews were transcribed and analysed both thematically and as narratives.
Participants 21 patients, and 13 informal carers (a family member, friend, or neighbour) and 18 professional carers (a key health or social care professional) nominated by the patients.
Setting Primary and secondary care in Lothian, Tayside, and Forth Valley, Scotland, during 2007-9.
Results Eleven patients died during the study period. Our final dataset comprised 92 interviews (23 conducted with patient and informal carer together). Severe symptoms that caused major disruption to normal life were described, often in terms implying acceptance of the situation as a “way of life” rather than an “illness.” Patients and their informal carers adapted to and accepted the debilitating symptoms of a lifelong condition. Professional carers’ familiarity with the patients’ condition, typically over many years, and prognostic uncertainty contributed to the difficulty of recognising and actively managing end stage disease. Overall, patients told a “chaos narrative” of their illness that was indistinguishable from their life story, with no clear beginning and an unanticipated end described in terms comparable with attitudes to death in a normal elderly population.
Conclusions Our findings challenge current assumptions underpinning provision of end of life care for people with COPD. The policy focus on identifying a time point for transition to palliative care has little resonance for people with COPD or their clinicians and is counter productive if it distracts from early phased introduction of supportive care. Careful assessment of possible supportive and palliative care needs should be triggered at key disease milestones along a lifetime journey with COPD, in particular after hospital admission for an exacerbation.
doi:10.1136/bmj.d142
PMCID: PMC3025692  PMID: 21262897
5.  Time to care? Health of informal older carers and time spent on health related activities: an Australian survey 
BMC Public Health  2013;13:374.
Background
Little is known about the time spent on specific health related activities by older adult informal carers who assist people with chronic illness. Research has not yet addressed the association between carer health status and their care demands. Such information could inform policy and health system efforts to manage chronic illness.
Methods
We conducted an Australia wide survey using recall questionnaires to record time use. The study asked how much time is spent on “most days” for the most common activities like taking medication, self-treatment and testing, and how much time in the last month on less common activities like attending a physician or shopping associated with health needs. The survey was mailed to 5,000 members of National Seniors Australia; 2,500 registrants on the National Diabetes Services Scheme; and 3,100 members of the Australian Lung Foundation. A total of 2519 people responded, including 313 people who identified as informal carers. Statistical analysis was undertaken using Stata 11. Standard errors and confidence intervals were derived using bootstrapping techniques within Stata 11.
Results
Most carers (96.2%) had chronic illness themselves, and those with greater numbers of chronic illnesses were those who faced the greatest overall time demands. The top decile of carers devoted between 8.5 and 10 hours a day to personal and caring health related activities. Informal carers with chronic illness spent more time managing their own health than people with chronic illness who were not informal carers. These carers spent more time on caring for others than on caring for their own health. High levels of caring responsibility were associated with poorer reported carer health.
Conclusions
Policy and health care services will need to adapt to recognise and reduce the time burden on carers who themselves have chronic illness. More carefully targeted investment in the social infrastructure of formal care would free up carers for other activities (including their own care) and holds the potential to improve the quality of life as well as the health outcomes of this population.
doi:10.1186/1471-2458-13-374
PMCID: PMC3641944  PMID: 23607727
Carer; Informal care; Health services; Respite; Chronic illness; Long term condition; Chronic disease; Time; Time use; Australia; Health related activities
6.  Time spent on health related activities associated with chronic illness: a scoping literature review 
BMC Public Health  2012;12:1044.
Background
The management of health care, particularly for people with chronic conditions, combines the activities of health professionals, patients, informal carers and social networks that support them. Understanding the non-professional roles in health management requires information about the health related activities (HRA) that are undertaken by patients and informal carers. This understanding allows management planning that incorporates the capacity of patients and informal carers, as well as identifying the particular skills, knowledge and technical support that are necessary. This review was undertaken to identify how much time people with chronic illness and their informal carers spend on HRA.
Methods
Literature searches of three electronic databases (CINAHL, Medline, and PubMed) and two journals (Time and Society, Sociology of Health and Illness) were carried out in 2011 using the following search terms (and derivatives): chronic illness AND time AND consumer OR carer. The search was aimed at finding studies of time spent on HRA. A scoping literature review method was utilised.
Results
Twenty-two peer reviewed articles published between 1990 and 2010 were included for review. The review identified limited but specific studies about time use by people with a chronic illness and/or their carers. While illness work was seen as demanding, few studies combined inquiry about both defined tasks and defined time use. It also identified methodological issues such as consistency of definition and data collection methods, which remain unresolved.
Conclusions
While HRA are seen as demanding by people doing them, few studies have measured actual time taken to carry out a comprehensive range of HRA. The results of this review suggest that both patients with chronic illness and informal carers may be spending 2 hours a day or more on HRA. Illnesses such as diabetes may be associated with higher time use. More empirical research is needed to understand the time demands of self-management, particularly for those affected by chronic illness.
doi:10.1186/1471-2458-12-1044
PMCID: PMC3533987  PMID: 23206340
Time; Time use; Health related; Chronic illness; Carer; Patient; Survey; Literature review
7.  Analysis of social networks supporting the self-management of type 2 diabetes for people with mental illness 
Background
People with mental illness have been identified as being more likely to experience type 2 diabetes and the complications arising from this, necessitating more complex chronic illness self-management. Social support has been identified as a significant factor in the successful adoption of lifestyle change for people with type 2 diabetes, however people with mental illness often have impoverished social networks leading to greater reliance upon professional care givers. This study maps the support provided by formal (paid and professional carers) and informal networks to people with mental illness and type 2 diabetes, comparing the experiences of people with a spouse with those without one.
Methods
Interviews were conducted with 29 clients of a community nursing service with mental health problems who receive professional support to self-manage type 2 diabetes. Participants were asked to complete an egocentric social network map which involved mapping the people and services who support them to manage their health. Demographic data was collected as was data about co-morbidities and service use within the last 6 months. Network maps were supplemented by a series of open-ended questions about self-management practices, who supports these practices and what support they provide.
Results
Participants identified small social networks with few friendship ties. These networks had diminished due to illness. For people with a spouse, this person provided significant support for chronic illness self-management performing a range of daily care and illness management tasks. People without a spouse were more reliant on professional and paid care givers for daily care and illness management. People without a spouse also demonstrated greater reliance upon weak social ties for emotional support and social connection and often developed friendships with formal caregivers.
Conclusions
Spousal support reduces the need for professional services. In the absence of a spouse, participants were more reliant upon paid and professional carers and weaker social ties for chronic illness support and social connection leading to greater vulnerability of loss of support.
Electronic supplementary material
The online version of this article (doi:10.1186/s12913-015-0897-x) contains supplementary material, which is available to authorized users.
doi:10.1186/s12913-015-0897-x
PMCID: PMC4490681  PMID: 26138825
Chronic illness self-management; Social networks; Mental health; Type 2 diabetes; Health services
8.  Qualitative study of young people's and parents' beliefs about childhood asthma. 
BACKGROUND: Asthma continues to be a common childhood chronic illness managed principally in primary care. Self-management requires co-ordinated efforts of young people, carers and health professionals. Non-compliance occurs even when parents are supervising care, suggesting that decisions are made on the basis of beliefs that contrast with professional advice. Health professionals therefore need to understand the views of parents (or other carers) and patients to promote good self-management. Little attention has been given to carers' and young people's perspectives on asthma. AIM: To gain insights into the beliefs of a group of 25 young people aged nine to 16 years old and their carers about asthma and its management. DESIGN OF STUDY: Qualitative study using conversational-style interviews. SETTING: Generally deprived urban areas of Greater Manchester. METHOD: Interviews were conducted with 25 young people with asthma and separately with their carers. The interviews were analysed using the principles and procedures of grounded theory. RESULTS: Carers reported assessing asthma symptoms through observed effects on the child and other family members, including emotions and behaviours that disrupted family life. Young people emphasised the effect of asthma on their everyday lives and in particular the extent to which they appeared different to their peers. Some young people reported continuing symptoms and restrictions of activity that differed widely from the reports of their carers. CONCLUSION: Differences between young people's and carers' criteria for assessment suggest explanations for some 'non-compliant' behaviour. Carers' assessment of asthma severity through the absence of acute attacks is consistent with managing asthma as intermittent acute episodes. Professionals should take account of differences between young people's, carers' and professionals' perceptions of asthma.
PMCID: PMC1314542  PMID: 14694693
9.  Meso level influences on long term condition self-management: stakeholder accounts of commonalities and differences across six European countries 
BMC Public Health  2015;15:622.
Background
European countries are increasingly adopting systems of self –care support (SMS) for long term conditions which focus on enhancing individual, competencies, skills, behaviour and lifestyle changes. To date the focus of policy for engendering greater self- management in the population has been focused in the main on the actions and motivations of individuals. Less attention has been paid to how the broader influences relevant to SMS policy and practice such as those related to food production, distribution and consumption and the structural aspects and economics relating to physical exercise and governance of health care delivery systems might be implicated in the populations ability to self- manage. This study aimed to identify key informants operating with knowledge of both policy and practice related to SMS in order to explore how these influences are seen to impact on the self-management support environment for diabetes type 2.
Methods
Ninety semi-structured interviews were conducted with key stakeholder informants in Bulgaria, Spain, Greece, Norway, Netherlands and UK. Interviews were transcribed and analysed using thematic and textual analysis.
Results
Stakeholders in the six countries identified a range of influences which shaped diabetes self-management (SM). The infrastructure and culture for supporting self- management practice is viewed as driven by political decision-makers, the socio-economic and policy environment, and the ethos and delivery of chronic illness management in formal health care systems. Three key themes emerged during the analysis of data. These were 1) social environmental influences on diabetes self-management 2) reluctance or inability of policy makers to regulate processes and environments related to chronic illness management 3) the focus of healthcare system governance and gaps in provision of self-management support (SMS). Nuances in the salience and content of these themes between partner countries related to the presence and articulation ofdedicated prevention and self- management policies, behavioural interventions in primary care, drug company involvement and the impact of measures resulting from economic crises, and differences between countries with higher versus lower social welfare support and public spending on shaping illness management.
Conclusions
The results suggest reasons for giving increasing prominence to meso level influences as a means of rebalancing and improving the effectiveness of implementing an agenda for SMS. There is a need to acknowledge the greater economic and policy challenging environment operating in some countries which act as a source of inequality between countries in addressing SMS for chronic illness management and impacts on people's capacity to undertake self-care activities.
Electronic supplementary material
The online version of this article (doi:10.1186/s12889-015-1957-1) contains supplementary material, which is available to authorized users.
doi:10.1186/s12889-015-1957-1
PMCID: PMC4495781  PMID: 26152139
Self-management support; Long-term conditions; Diabetes Type 2; Macro; Meso level influences; State capacity; Cross-national comparison
10.  Uncovering Treatment Burden as a Key Concept for Stroke Care: A Systematic Review of Qualitative Research 
PLoS Medicine  2013;10(6):e1001473.
In a systematic review of qualitative research, Katie Gallacher and colleagues examine the evidence related to treatment burden after stroke from the patient perspective.
Please see later in the article for the Editors' Summary
Background
Patients with chronic disease may experience complicated management plans requiring significant personal investment. This has been termed ‘treatment burden’ and has been associated with unfavourable outcomes. The aim of this systematic review is to examine the qualitative literature on treatment burden in stroke from the patient perspective.
Methods and Findings
The search strategy centred on: stroke, treatment burden, patient experience, and qualitative methods. We searched: Scopus, CINAHL, Embase, Medline, and PsycINFO. We tracked references, footnotes, and citations. Restrictions included: English language, date of publication January 2000 until February 2013. Two reviewers independently carried out the following: paper screening, data extraction, and data analysis. Data were analysed using framework synthesis, as informed by Normalization Process Theory. Sixty-nine papers were included. Treatment burden includes: (1) making sense of stroke management and planning care, (2) interacting with others, (3) enacting management strategies, and (4) reflecting on management. Health care is fragmented, with poor communication between patient and health care providers. Patients report inadequate information provision. Inpatient care is unsatisfactory, with a perceived lack of empathy from professionals and a shortage of stimulating activities on the ward. Discharge services are poorly coordinated, and accessing health and social care in the community is difficult. The study has potential limitations because it was restricted to studies published in English only and data from low-income countries were scarce.
Conclusions
Stroke management is extremely demanding for patients, and treatment burden is influenced by micro and macro organisation of health services. Knowledge deficits mean patients are ill equipped to organise their care and develop coping strategies, making adherence less likely. There is a need to transform the approach to care provision so that services are configured to prioritise patient needs rather than those of health care systems.
Systematic Review Registration
International Prospective Register of Systematic Reviews CRD42011001123
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Every year, 15 million people have a stroke. About 5 million of these people die within a few days, and another 5 million are left disabled. Stroke occurs when the blood supply of the brain is suddenly interrupted by a blood vessel in the brain being blocked by a blood clot (ischemic stroke) or bursting (hemorrhagic stroke). Deprived of the oxygen normally carried to them by the blood, the brain cells near the blockage die. The symptoms of stroke depend on which part of the brain is damaged but include sudden weakness or paralysis along one side of the body, vision loss in one or both eyes, and confusion or trouble speaking or understanding speech. Anyone experiencing these symptoms should seek immediate medical attention because prompt treatment can limit the damage to the brain. In the longer term, post-stroke rehabilitation can help individuals overcome the physical disabilities caused by stroke, and drugs that thin the blood, reduce blood pressure and reduce cholesterol (major risk factors for stroke) alongside behavioral counseling can reduce the risk of a second stroke.
Why Was This Study Done?
Treatment for, and rehabilitation from, stroke is a lengthy process that requires considerable personal investment from the patient. The term “treatment burden” describes the self-care practices that patients with stroke and other chronic diseases must perform to follow the complicated management strategies that have been developed for these conditions. Unfortunately, treatment burden can overwhelm patients. They may be unable to cope with the multiple demands placed on them by health-care providers and systems for their self-care, a situation that leads to poor adherence to therapies and poor outcomes. For example, patients may find it hard to complete all the exercises designed to help them regain full movement of their limbs after a stroke. Treatment burden has been poorly examined in relation to stroke. Here, the researchers identify and describe the treatment burden in stroke by undertaking a systematic review (a study that uses predefined criteria to identify all the literature on a given topic) of qualitative studies on the patient experience of stroke management. Qualitative studies collect non-quantitative data so, for example, a qualitative study on stroke treatment might ask people how the treatment made them feel whereas a quantitative study might compare clinical outcomes between those receiving and not receiving the treatment.
What Did the Researchers Do and Find?
The researchers identified 69 qualitative studies dealing with the experiences of stroke management of adult patients and analyzed the data in these papers using framework synthesis—an approach that divides data into thematic categories. Specifically, the researchers used a coding framework informed by normalization process theory, a sociological theory of the implementation, embedding and integration of tasks and practices; embedding is the process of making tasks and practices a routine part of everyday life and integration refers to sustaining these embedded practices. The researchers identified four main areas of treatment burden for stroke: making sense of stroke management and planning care; interacting with others, including health care professionals, family and other patients with stroke; enacting management strategies (including enduring institutional admissions, managing stroke in the community, reintegrating into society and adjusting to life after stroke); and reflecting on management to make decisions about self-care. Moreover, they identified problems in all these areas, including inadequate provision of information, poor communication with health-care providers, and unsatisfactory inpatient care.
What Do These Findings Mean?
These findings show that stroke management is extremely demanding for patients and is influenced by both the micro and macro organization of health services. At the micro organizational level, fragmented care and poor communication between patients and clinicians and between health-care providers can mean patients are ill equipped to organize their care and develop coping strategies, which makes adherence to management strategies less likely. At the macro organizational level, it can be hard for patients to obtain the practical and financial help they need to manage their stroke in the community. Overall, these findings suggest that care provision for stroke needs to be transformed so that the needs of patients rather than the needs of health-care systems are prioritized. Further work is required, however, to understand how the patient experience of treatment burden is affected by the clinical characteristics of stroke, by disability level, and by other co-existing diseases. By undertaking such work, it should be possible to generate a patient-reported outcome measure of treatment burden that, if used by policy makers and health-care providers, has the potential to improve the quality of stroke care.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001473.
The US National Institute of Neurological Disorders and Stroke provides information about all aspects of stroke (in English and Spanish); its Know Stroke site provides educational materials about stroke prevention, treatment, and rehabilitation including personal stories (in English and Spanish); the US National Institutes of Health SeniorHealth website has additional information about stroke
The Internet Stroke Center provides detailed information about stroke for patients, families, and health professionals (in English and Spanish)
The UK National Health Service Choices website also provides information about stroke for patients and their families, including personal stories
MedlinePlus has links to additional resources about stroke (in English and Spanish)
The UK not-for-profit website Healthtalkonline provides personal stories about stroke
Wikipedia provides information on the burden of treatment and on the normalization process theory (note: Wikipedia is a free online encyclopedia that anyone can edit; available in several languages)
doi:10.1371/journal.pmed.1001473
PMCID: PMC3692487  PMID: 23824703
11.  "This does my head in". Ethnographic study of self-management by people with diabetes 
Background
Self-management is rarely studied 'in the wild'. We sought to produce a richer understanding of how people live with diabetes and why self-management is challenging for some.
Method
Ethnographic study supplemented with background documents on social context. We studied a socio-economically and ethnically diverse UK population. We sampled 30 people with diabetes (15 type 1, 15 type 2) by snowballing from patient groups, community contacts and NHS clinics. Participants (aged 5-88, from a range of ethnic and socio-economic groups) were shadowed at home and in the community for 2-4 periods of several hours (total 88 visits, 230 hours); interviewed (sometimes with a family member or carer) about their self-management efforts and support needs; and taken out for a meal. Detailed field notes were made and annotated. Data analysis was informed by structuration theory, which assumes that individuals' actions and choices depend on their dispositions and capabilities, which in turn are shaped and constrained (though not entirely determined) by wider social structures.
Results
Self-management comprised both practical and cognitive tasks (e.g. self-monitoring, menu planning, medication adjustment) and socio-emotional ones (e.g. coping with illness, managing relatives' input, negotiating access to services or resources). Self-management was hard work, and was enabled or constrained by economic, material and socio-cultural conditions within the family, workplace and community. Some people managed their diabetes skilfully and flexibly, drawing on personal capabilities, family and social networks and the healthcare system. For others, capacity to self-manage (including overcoming economic and socio-cultural constraints) was limited by co-morbidity, cognitive ability, psychological factors (e.g. under-confidence, denial) and social capital. The consequences of self-management efforts strongly influenced people's capacity and motivation to continue them.
Conclusion
Self-management of diabetes is physically, intellectually, emotionally and socially demanding. Non-engagement with self-management may make sense in the context of low personal resources (e.g. health literacy, resilience) and overwhelming personal, family and social circumstances. Success of self-management as a policy solution will be affected by interacting influences at three levels: [a] at micro level by individuals' dispositions and capabilities; [b] at meso level by roles, relationships and material conditions within the family and in the workplace, school and healthcare organisation; and [c] at macro level by prevailing economic conditions, cultural norms and expectations, and the underpinning logic of the healthcare system. We propose that the research agenda on living with diabetes be extended and the political economy of self-management systematically studied.
doi:10.1186/1472-6963-12-83
PMCID: PMC3349490  PMID: 22458767
Diabetes; Self-management; Structuration theory; Ethnography
12.  With good intentions: complexity in unsolicited informal support for Aboriginal and Torres Strait Islander peoples. A qualitative study 
BMC Public Health  2011;11:686.
Background
Understanding people's social lived experiences of chronic illness is fundamental to improving health service delivery and health outcomes, particularly in relation to self-management activity. In explorations of social lived experiences this paper uncovers the ways in which Aboriginal and Torres Strait Islander people with chronic illness experience informal unsolicited support from peers and family members.
Methods
Nineteen Aboriginal and Torres Islander participants were interviewed in the Serious and Continuing Illness Policy and Practice Study (SCIPPS). Participants were people with Type 2 diabetes (N = 17), chronic obstructive pulmonary disease (N = 3) and/or chronic heart failure (N = 11) and family carers (N = 3). Participants were asked to describe their experience of having or caring for someone with chronic illness. Content and thematic analysis of in-depth semi-structured interviews was undertaken, assisted by QSR Nvivo8 software.
Results
Participants reported receiving several forms of unsolicited support, including encouragement, practical suggestions for managing, nagging, growling, and surveillance. Additionally, participants had engaged in 'yarning', creating a 'yarn' space, the function of which was distinguished as another important form of unsolicited support. The implications of recognising these various support forms are discussed in relation to responses to unsolicited support as well as the needs of family carers in providing effective informal support.
Conclusions
Certain locations of responsibility are anxiety producing. Family carers must be supported in appropriate education so that they can provide both solicited and unsolicited support in effective ways. Such educational support would have the added benefit of helping to reduce carer anxieties about caring roles and responsibilities. Mainstream health services would benefit from fostering environments that encourage informal interactions that facilitate learning and support in a relaxed atmosphere.
doi:10.1186/1471-2458-11-686
PMCID: PMC3176222  PMID: 21888670
Aboriginal; Indigenous; chronic heart failure; chronic illness; chronic obstructive pulmonary disease; diabetes; qualitative methods; self-management
13.  Centralisation of end of life care coordination: impact on the role of community providers 
London Journal of Primary Care  2009;2(2):102-106.
Key messages
Survey and anecdotal evidence suggests that the majority of people would wish to be cared for and die in their own home, which has implications for how health and social care is coordinated and delivered in the community setting.
Centralised administrative coordination has benefits for the delivery of end of life care, and in particular allows community nurses to spend more time with patients, particularly those with complex needs.
Centralised coordination also has the potential to adversely affect communication between professionals, and may lead to inequitable or ill-considered allocation of resources across patient groups.
Centralised coordination should incorporate clinical input, to ensure a more appropriate allocation of resources.
Why this matters to me
End of life care has historically received limited policy or service improvement intervention. As such, there is now much debate regarding the delivery and coordination of quality care. Patients who are nearing the end of life (and their carers) interact with many different health and social care providers, and it is vital that there is a comprehensive and transparent process for coordinating this care.
Background The recently published End of Life Care Strategy1 and emerging service improvements have raised the profile of end of life care (EOLC) across health and social care sectors. Policy emphasises providing patients with more choice over where they are cared for at the end of life. Surveys and anecdotal evidence suggest that the majority of people would prefer to be cared for (and die) in their own home. Such care provision evidently requires considered planning across community providers. Some areas have instigated a centralised administrative process for such care planning.
Setting This shift towards centralising the administrative function of care coordination for patients who are nearing the end of life has implications for community care providers.
Question This paper seeks to understand the impact that centralising EOLC care coordination in the community has had on community providers.
Methods This paper draws on findings from case studies of two large primary care trust (PCT) regions in England. One hundred and two semi-structured interviews with service managers, commissioners and providers were conducted across the two case studies, as well as two focus groups (ten participants – acute and community nurses), observation of key local palliative care planning meetings, and documentary analysis of strategic and operational papers.
Results The findings presented demonstrate that a centralised approach to care planning has positive outcomes for community nurses, who are able to spend more time delivering direct patient care. However, there were challenges associated with the approach – particularly the capacity of an administrative process to intelligently allocate finite resources amongst patients with a range of care needs.
Conclusions The centralisation of care planning had implications for how community nurses conceptualised their role in the delivery and coordination of EOLC. Community nurses were positive regarding the alleviation of the administrative burden; however the approach challenged their professional role as key worker – particularly in making judgements as to the nature and appropriateness of patient care packages.
PMCID: PMC4222151  PMID: 25949586
case studies; community health nursing; coordination; palliative care; professional role
14.  Cardiac Complications in Patients with Community-Acquired Pneumonia: A Systematic Review and Meta-Analysis of Observational Studies 
PLoS Medicine  2011;8(6):e1001048.
Vicente Corrales-Medina and colleagues report estimates of the risk of cardiac complications among patients with community-acquired pneumonia from a systematic review and meta-analysis.
Background
Community-acquired pneumonia (CAP) is a leading cause of morbidity and mortality. CAP can trigger acute cardiac events. We sought to determine the incidence of major cardiac complications in CAP patients to characterize the magnitude of this problem.
Methods and Findings
Two investigators searched MEDLINE, Scopus, and EMBASE for observational studies of immunocompetent adults with clinical and radiological evidence of CAP that reported any of the following: overall cardiac complications, incident heart failure, acute coronary syndromes (ACS), or incident cardiac arrhythmias occurring within 30 days of CAP diagnosis. At a minimum, studies had to establish enrolment procedures and inclusion and exclusion criteria, enrol their patients sequentially, and report the incidence of cardiac complications as a function of their entire cohorts. Studies with focus on nosocomial or health care–associated pneumonia were not included. Review of 2,176 citations yielded 25 articles that met eligibility and minimum quality criteria. Seventeen articles (68%) reported cohorts of CAP inpatients. In this group, the pooled incidence rates for overall cardiac complications (six cohorts, 2,119 patients), incident heart failure (eights cohorts, 4,215 patients), acute coronary syndromes (six cohorts, 2,657 patients), and incident cardiac arrhythmias (six cohorts, 2,596 patients), were 17.7% (confidence interval [CI] 13.9–22.2), 14.1% (9.3–20.6), 5.3% (3.2–8.6), and 4.7% (2.4–8.9), respectively. One article reported cardiac complications in CAP outpatients, four in low-risk (not severely ill) inpatients, and three in high-risk inpatients. The incidences for all outcomes except overall cardiac complications were lower in the two former groups and higher in the latter. One additional study reported on CAP outpatients and low-risk inpatients without discriminating between these groups. Twelve studies (48%) asserted the evaluation of cardiac complications in their methods but only six (24%) provided a definition for them. Only three studies, all examining ACS, carried out risk factor analysis for these events. No study analyzed the association between cardiac complications and other medical complications or their impact on other CAP outcomes.
Conclusions
Major cardiac complications occur in a substantial proportion of patients with CAP. Physicians and patients need to appreciate the significance of this association for timely recognition and management of these events. Strategies aimed at preventing pneumonia (i.e., influenza and pneumococcal vaccination) in high-risk populations need to be optimized. Further research is needed to understand the mechanisms underlying this association, measure the impact of cardiac complications on other CAP outcomes, identify those patients with CAP at high risk of developing cardiac complications, and design strategies to prevent their occurrence in this population.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
Community-acquired pneumonia (CAP), that is, pneumonia infections contracted outside of hospital or health care settings, is a common condition and can be fatal, particularly to older people. For example, every year, an estimated 5–6 million people contract this form of pneumonia in the US, leading to 1.1 million people being admitted to hospitals and causing 60,000 deaths—the most frequent cause of infectious disease-related mortality. In the US for example, more than half of older patients who present to the hospital with CAP have preexisting chronic cardiac conditions—an important fact given that acute infections, such as CAP, can affect the cardiovascular system in various ways and precipitate acute cardiac events, such as heart failure, heart attacks, and cardiac arrhythmias.
Why Was This Study Done?
Although it is bio-medically plausible that a considerable proportion of patients with CAP have cardiac complications, systematic data on the scale of this potential problem are lacking—a concerning omission given the important implications for health policy-making and direct patient care. Therefore, in this study, the researchers conducted a systematic review to examine the published literature on cardiac complications in patients with CAP in order to characterize the nature and significance of this association, and to identify areas that require further research and investigation.
What Did the Researchers Do and Find?
The researchers searched MEDLINE, Scopus, and EMBASE for all relevant articles published in English, French, or Spanish languages until June 2010. The researchers used strict criteria to select appropriate articles (such as radiographic evidence of CAP) and only selected studies that had outcomes of the incidence of cardiac complications, such as incident (new or worsening) heart failure, acute coronary syndromes (acute myocardial infarction or unstable angina), and incident cardiac arrhythmias within 30 days of diagnosis of CAP.
Using these methods, the researchers identified 2,176 articles for review and selected 25 eligible papers for their analysis. Seventeen articles (68%) reported cohorts of CAP inpatients. In this group, the pooled incidence rates of overall cardiac complications (six cohorts, 2,119 patients), incident heart failure (eight cohorts, 4,215 patients), acute coronary syndromes (six cohorts, 2,657 patients), and incident cardiac arrhythmias (six cohorts, 2,596 patients), were 17.7%, 14.1%, 5.3%, and 4.7% respectively. Only three studies, (all of acute coronary syndromes) did risk factor analysis for these events. Possible risk factors identified included older age, preexisting congestive heart failure, severity of pneumonia, and the use of insulin by glucose sliding scales in hospitalized patients. No study analyzed the association between cardiac complications and other medical complications (such as acute renal failure, respiratory failure, shock, etc.) or their impact on other outcomes, such as death, in patients with CAP.
What Do These Findings Mean?
Although limited to a mostly descriptive analysis, these findings clearly show that major cardiac complications occur in a significant proportion of patients with CAP, especially in those admitted to hospital. These findings have important clinical and public health implications. Clinicians should be more aware of the significance of the association between CAP and cardiac complications to better inform, treat, and manage patients. Physicians and health officials need to increase efforts to optimize the rates of influenza and pneumococcal vaccination among older people and those with chronic cardiac conditions to reduce the incidence of CAP in these high-risk populations. There needs to be more consideration given to the potential impact of cardiac complications on mortality and costs associated with CAP. Finally, these findings highlight the need for prospective, well-designed, and adequately powered studies of cardiac complications in patients with CAP. More research attention should be given to this important area in order to improve the outcomes for patients with CAP and to decrease the consequent burden on health care systems through recognition of risk, prevention, and intervention on acute cardiac complications.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001048.
Information can be found on Wikipedia on community-acquired pneumonia (note that Wikipedia is a free online encyclopedia that anyone can edit; available in several languages)
The US Centers for Disease Control provide patient information on community-acquired pneumonia
The American Heart Association provides information on heart failure, acute coronary syndromes, and arrhythmias
doi:10.1371/journal.pmed.1001048
PMCID: PMC3125176  PMID: 21738449
15.  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
16.  Decision aids for respite service choices by carers of people with dementia: development and pilot RCT 
Background
Decision aids are often used to assist individuals confronted with a diagnosis of a serious illness to make decisions about treatment options. However, they are rarely utilised to help those with chronic or age related conditions to make decisions about care services. Decision aids should also be useful for carers of people with decreased decisional capacity. These carers' choices must balance health outcomes for themselves and for salient others with relational and value-based concerns, while relying on information from health professionals. This paper reports on a study that both developed and pilot tested a decision aid aimed at assisting carers to make evaluative judgements of community services, particularly respite care.
Methods
A mixed method sequential study, involving qualitative development and a pilot randomised controlled trial, was conducted in Tasmania, Australia. We undertook 13 semi-structured interviews and three focus groups to inform the development of the decision aid. For the randomised control trial we randomly assigned 31 carers of people with dementia to either receive the service decision aid at the start or end of the study. The primary outcome was measured by comparing the difference in carer burden between the two groups three months after the intervention group received the decision aid. Pilot data was collected from carers using interviewer-administered questionnaires at the commencement of the project, two weeks and 12 weeks later.
Results
The qualitative data strongly suggest that the intervention provides carers with needed decision support. Most carers felt that the decision aid was useful. The trial data demonstrated that, using the mean change between baseline and three month follow-up, the intervention group had less increase in burden, a decrease in decisional conflict and increased knowledge compared to control group participants.
Conclusions
While these results must be interpreted with caution due to the small sample size, all intervention results trend in a direction that is beneficial for carers and their decisional ability. Mixed method data suggest the decision aid provides decisional support that carers do not otherwise receive. Decision aids may prove useful in a community health services context.
Trial registration number
ISRCTN: ISRCTN32163031
doi:10.1186/1472-6947-12-21
PMCID: PMC3315425  PMID: 22429384
Decisional conflict; Decision aid; Dementia; Carer; Community services; Randomised-control trial; Qualitative
17.  Exploration of transitional life events in individuals with Friedreich ataxia: Implications for genetic counseling 
Abstract
Background
Human development is a process of change, adaptation and growth. Throughout this process, transitional events mark important points in time when one's life course is significantly altered. This study captures transitional life events brought about or altered by Friedreich ataxia, a progressive chronic illness leading to disability, and the impact of these events on an affected individual's life course.
Methods
Forty-two adults with Friedreich ataxia (18-65y) were interviewed regarding their perceptions of transitional life events. Data from the interviews were coded and analyzed thematically using an iterative process.
Results
Identified transitions were either a direct outcome of Friedreich ataxia, or a developmental event altered by having the condition. Specifically, an awareness of symptoms, fear of falling and changes in mobility status were the most salient themes from the experience of living with Friedreich ataxia. Developmental events primarily influenced by the condition were one's relationships and life's work.
Conclusions
Friedreich ataxia increased the complexity and magnitude of transitional events for study participants. Transitional events commonly represented significant loss and presented challenges to self-esteem and identity. Findings from this study help alert professionals of potentially challenging times in patients' lives, which are influenced by chronic illness or disability. Implications for developmental counseling approaches are suggested for genetic counseling.
Background
Human development can be described in terms of key transitional events, or significant times of change. Transitional events initiate shifts in the meaning or direction of life and require the individual to develop skills or utilize coping strategies to adapt to a novel situation [1,2]. A successful transition has been defined as the development of a sense of mastery over the changed event [3].
Transitions can be influenced by a variety of factors including one's stage of development, such as graduation from high school, historical events, including war, and idiosyncratic factors, such as health status [4,5]. Of particular interest in the present study are transitional life events, brought about or altered by progressive chronic illness and disability, and the impact of these events on the lives of affected individuals.
It has been recognized that the clinical characteristics of a chronic illness or disability may alter the course and timing of many developmentally-related transitional events [6]. For example, conditions associated with a shortened lifespan may cause an individual to pursue a career with a shorter course of training [6]. Specific medical manifestations may also promote a lifestyle incongruent with developmental needs [6,7]. For example, an adolescent with a disability may have difficulty achieving autonomy because of his/her physical dependence on others.
In addition to the aforementioned effects of chronic illness and disability on developmentally-related transitional events, a growing body of literature has described disease-related transitional events: those changes that are a direct result of chronic illness and disability. Diagnosis has received attention as being a key disease-related transitional event [8,9]. Studies have also noted other disease transitions related to illness trajectory [10], as the clinical features of the disease may require the individual to make specific adaptations. Disease-related events have also been described in terms of accompanying psychological processes, such as one's awareness of differences brought about by illness [11].
While disease-related events are seemingly significant, the patient's perception of the events is varied. Some events may be perceived as positive experiences for the individual. For example, a diagnosis may end years of uncertainty. Some individuals may perceive these transitional events as insignificant, as they have accommodated to the continual change brought about by a chronic disease [12,13].
The aforementioned impact of disability and chronic illness on transitional events may create psychological stress. Developed by Lazarus and Folkman, the Transitional Model of Stress and Coping describes the process of adaptation to a health condition [14]. This model purports that individuals first appraise a stressor and then utilize a variety of coping strategies in order to meet the stressor's demands [14]. Thus, in the context of chronic illness, the ability of the individual to cope successfully with the stress of a health threat contributes to the process of overall adaptation to the condition.
The process of adaptation can be more complex when the chronic illness or disability is progressive. Each transition brought about or altered by the disability may also represent additional loss, including the loss of future plans, freedom in social life and the ability to participate in hobbies [15]. These losses may be accompanied by grief, uncertainty, and a continual need for adaptation [16,17].
Friedreich ataxia (FRDA) is one example of a progressive disorder, leading to adolescent and adult onset disability. To better understand patients' perceptions of key transitional events and the factors perceived to facilitate progression through these events, individuals with FRDA were interviewed.
FRDA is a rare, progressive, neurodegenerative disorder affecting approximately one in 30,000 people in the United States [18]. It equally affects both men and women. Individuals with FRDA experience progressive muscle weakness and loss of coordination in the arms and legs. For most patients, ataxia leads to motor incapacitation and full-time use of a wheelchair, commonly by the late teens or early twenties. Other complications such as vision and hearing impairment, dysarthria, scoliosis, diabetes mellitus and hypertrophic cardiomyopathy may occur [19,20]. Cardiomyopathy and respiratory difficulties often lead to premature death at an average age of 37 years [21]. Currently, there are no treatments or cures for FRDA. Little is known about the specific psychological or psychosocial effects of the condition.
FRDA is an autosomal recessive condition. The typical molecular basis of Friedreich ataxia is the expansion of a GAA trinucleotide repeat in both copies of the FXN gene [22]. Age of onset usually occurs in late childhood or early adolescence. However, the availability of genetic testing has identified affected individuals with an adult form of the condition. This late-onset form is thought to represent approximately 10-15% of the total FRDA population [23].
Health care providers of individuals with progressive, neurodegenerative disorders can help facilitate their patients' progression through transitional events. Data suggest that improvements should be made in the care of these individuals. Shaw et al. [24] found that individualized care that helps to prepare patients for transition is beneficial. Beisecker et al. [25] found that patients desire not only physical care from their providers, but also emotional and psychosocial support.
Genetic counselors have an important opportunity to help patients with neuromuscular disorders progress through transitional events, as several of these conditions have a genetic etiology. Genetic counselors in pediatric and adult settings often develop long-term relationships with patients, due to follow-up care. This extended relationship is becoming increasingly common as genetic counselors move into various medical sub-specialties, such as neurology, ophthalmology, oncology and cardiology.
The role of the genetic counselor in addressing the psychosocial needs of patients has been advocated, but rarely framed in the context of developmental events [26]. Data suggest that patients may not expect a genetic counselor to address psychosocial needs [27]. In a survey of genetic counseling patients, Wertz [28] found a majority of respondents understood genetic conditions to have a moderate to serious effect on family life and finances, while almost half perceived there to be an effect on the spouse, quality of life, and the relationship between home and work. However, these topics were reportedly not discussed within genetic counseling sessions [27,28]. Overall, there is limited information about the experiences of transitional life events in FRDA, as well as a lack of recommendations for genetic counselors and other health care providers to assist patients through these events.
Our study investigated perceptions of patients with Friedreich ataxia to 1) identify key transitional events and specific needs associated with events; 2) describe perception of factors to facilitate progression through the identified events; and 3) explore the actual or potential role of the health care provider in facilitating adaptation to the identified events. Data were used to make suggestions for developmental genetic counseling approaches in the context of ongoing care of clients with hereditary, progressive, neurodegenerative conditions.
doi:10.1186/1744-9081-6-65
PMCID: PMC2987979  PMID: 20979606
18.  A personalized care plan in chronic care: implementation and evaluation 
Purpose
Implementation and evaluation of a personalized care plan for approximately 350 people with (an increased risk of) cardiovascular disease in ten general practices in the Netherlands.
Context
The ‘Healthy Vessels’ (‘Vitale Vaten’) care standard of 2009 describes the optimum care for people with (an increased risk of) cardiovascular disease and is based on the Chronic Care Model. New: working with a personalized care plan, with detailed attention for the promotion of self-management and shared decision-making (SDM). This requires patients to adopt a more active attitude, with a more coaching role from care providers. Vilans has developed the personalized care plan for cardiovascular disease (the booklet ‘Zorgplan Vitale Vaten’) and the personalized care plan for diabetes and for COPD in 2011. In 2011 Vilans also started with the development of a general care plan for patients with multi morbidity diseases.
Data sources
Patients: quantitative survey with a written questionnaire sent to approximately 75 patients. Baseline and end points for 40 patients, plus in-depth interviews with eight patients.
Care providers
Quantitative survey with a written questionnaire sent to 45 care providers. Baseline and end points for 22 care providers, plus in-depth interviews with 10 care providers.
Case description
The personalized care plan is produced by a shared decision-making process and consists of:
A prioritised list of the patient’s SMART objectives
A personalized plan for achieving those objectives
Agreements concerning what the patient will do himself/herself and the support or advice needed
Agreements concerning contact to review the progress (how and when)
The patient or the care provider notes the plan in the patient’s booklet (the ‘Zorgplan Vitale Vaten’=‘Healthy Vessels Care Plan’). This booklet also contains information about the risk factors for cardiovascular disease, the importance of the patient adopting an active role, measurement values, medication and the patient’s care providers.
Advisers from Vilans, the knowledge centre for long-term care in the Netherlands, provide participating organisations guidance for the implementation of the personalized care plan with: work conferences, supporting products and monthly support phone-calls or e-mails.
The project consists of the following phases:
Jan 2010 to Jun 2010: development of materials
Jun 2010 to Oct 2011: implementation and evaluation in ten general practices
Nov 2011 to Feb 2012: project completion and reporting
The results will be available in February 2012
The study questions in this project are:
What effects does the personalized care plan have on the level of self-management of the patients?
What effects does the personalized care plan have on professionals in a multidisciplinary team?
Do the effects also apply to ethnic minority patients and patients with a low socio-economic status?
(Preliminary) conclusions:
Self-management/Shared Decision Making is difficult to implement. Regular feedback and joint learning are needed.
It is helpful when agreements between the patient and the care provider are made concrete: writing things down makes a difference.
Variable response from patients: ranging from ‘good to know you have something to fall back on’ to ‘the idea of writing down personal objectives makes me feel a bit nervous’.
The personalized care plan does not seem suitable for all, in particular not for the elderly, for those of low socio-economic status, and for ethnic minorities.
Discussion
Health care professionals are used to take care of patients with chronic diseases. They are very willing to help and give patients some advice about how they can prevent a chronic disease or have a good life with a chronic disease. During the conferences and phone calls we have with them, we see that the focus is more on caring instead of sharing and self-management. It frustrates professionals when patients do not behave the way they tell them to. They do not know how to handle or turn the conversation into self-management and rather fall back in their roll of caring. It seems necessary to get feedback on a regular basis so they can explore new ways of self-management support together in a multidisciplinary way.
Self-management support is more successful when professionals are working together, looking for ways to take into account the perspective and expectations of the patient as well as those of the professional. The personalized care plan can help patients and professionals exploring their new roles.
There are some relevant questions concerning personalized care plans in practice which we cannot yet answer. We would like to discuss these essential questions with the participants of INIC12. For example:
How important is it for patients to have a personalized care plan? Does it support them in making decisions concerning their health in daily life? In what way can a digital care plan provide help?
Do professionals improve their caring and communication with patients with chronic diseases when they use a personalized care plan?
Is it more successful when one professional is the central care provider for a patient?
What are good ways for integrating personalized care plans in usual care? Does it take more time in comparison to regular care?
How to create possibilities for professionals so they can regard the personalized care plan as an important topic in chronic care? We see it is difficult for a small group of patients. How to implement the personalized care plan for all the patients with a chronic disease?
What do the answers to these questions mean and does individual care planning change the health care process in such a way that self-management can flourish?
PMCID: PMC3617761
personalized care plan; self-management; vascular risk; multidisciplinary team; chronic care
19.  The Effectiveness of Mobile-Health Technology-Based Health Behaviour Change or Disease Management Interventions for Health Care Consumers: A Systematic Review 
PLoS Medicine  2013;10(1):e1001362.
Caroline Free and colleagues systematically review a fast-moving field, that of the effectiveness of mobile technology interventions delivered to healthcare consumers, and conclude that high-quality, adequately powered trials of optimized interventions are required to evaluate effects on objective outcomes.
Background
Mobile technologies could be a powerful media for providing individual level support to health care consumers. We conducted a systematic review to assess the effectiveness of mobile technology interventions delivered to health care consumers.
Methods and Findings
We searched for all controlled trials of mobile technology-based health interventions delivered to health care consumers using MEDLINE, EMBASE, PsycINFO, Global Health, Web of Science, Cochrane Library, UK NHS HTA (Jan 1990–Sept 2010). Two authors extracted data on allocation concealment, allocation sequence, blinding, completeness of follow-up, and measures of effect. We calculated effect estimates and used random effects meta-analysis. We identified 75 trials. Fifty-nine trials investigated the use of mobile technologies to improve disease management and 26 trials investigated their use to change health behaviours. Nearly all trials were conducted in high-income countries. Four trials had a low risk of bias. Two trials of disease management had low risk of bias; in one, antiretroviral (ART) adherence, use of text messages reduced high viral load (>400 copies), with a relative risk (RR) of 0.85 (95% CI 0.72–0.99), but no statistically significant benefit on mortality (RR 0.79 [95% CI 0.47–1.32]). In a second, a PDA based intervention increased scores for perceived self care agency in lung transplant patients. Two trials of health behaviour management had low risk of bias. The pooled effect of text messaging smoking cessation support on biochemically verified smoking cessation was (RR 2.16 [95% CI 1.77–2.62]). Interventions for other conditions showed suggestive benefits in some cases, but the results were not consistent. No evidence of publication bias was demonstrated on visual or statistical examination of the funnel plots for either disease management or health behaviours. To address the limitation of the older search, we also reviewed more recent literature.
Conclusions
Text messaging interventions increased adherence to ART and smoking cessation and should be considered for inclusion in services. Although there is suggestive evidence of benefit in some other areas, high quality adequately powered trials of optimised interventions are required to evaluate effects on objective outcomes.
Please see later in the article for the Editors' Summary
Editors’ Summary
Background
Every year, millions of people die from cardiovascular diseases (diseases of the heart and circulation), chronic obstructive pulmonary disease (a long-term lung disease), lung cancer, HIV infection, and diabetes. These diseases are increasingly important causes of mortality (death) in low- and middle-income countries and are responsible for nearly 40% of deaths in high-income countries. For all these diseases, individuals can adopt healthy behaviors that help prevent disease onset. For example, people can lower their risk of diabetes and cardiovascular disease by maintaining a healthy body weight, and, if they are smokers, they can reduce their risk of lung cancer and cardiovascular disease by giving up cigarettes. In addition, optimal treatment of existing diseases can reduce mortality and morbidity (illness). Thus, in people who are infected with HIV, antiretroviral therapy delays the progression of HIV infection and the onset of AIDS, and in people who have diabetes, good blood sugar control can prevent retinopathy (a type of blindness) and other serious complications of diabetes.
Why Was This Study Done?
Health-care providers need effective ways to encourage "health-care consumers" to make healthy lifestyle choices and to self-manage chronic diseases. The amount of information, encouragement and support that can be conveyed to individuals during face-to-face consultations or through traditional media such as leaflets is limited, but mobile technologies such as mobile phones and portable computers have the potential to transform the delivery of health messages. These increasingly popular technologies—more than two-thirds of the world's population now owns a mobile phone—can be used to deliver health messages to people anywhere and at the most relevant times. For example, smokers trying to quit smoking can be sent regular text messages to sustain their motivation, but can also use text messaging to request extra support when it is needed. But is "mHealth," the provision of health-related services using mobile communication technology, an effective way to deliver health messages to health-care consumers? In this systematic review (a study that uses predefined criteria to identify all the research on a given topic), the researchers assess the effectiveness of mobile technology-based health behavior change interventions and disease management interventions delivered to health-care consumers.
What Did the Researchers Do and Find?
The researchers identified 75 controlled trials (studies that compare the outcomes of people who do and do not receive an intervention) of mobile technology-based health interventions delivered to health-care consumers that met their predefined criteria. Twenty-six trials investigated the use of mobile technologies to change health behaviors, 59 investigated their use in disease management, most were of low quality, and nearly all were undertaken in high-income countries. In one high-quality trial that used text messages to improve adherence to antiretroviral therapy among HIV-positive patients in Kenya, the intervention significantly reduced the patients’ viral load but did not significantly reduce mortality (the observed reduction in deaths may have happened by chance). In two high-quality UK trials, a smoking intervention based on text messaging (txt2stop) more than doubled biochemically verified smoking cessation. Other lower-quality trials indicated that using text messages to encourage physical activity improved diabetes control but had no effect on body weight. Combined diet and physical activity text messaging interventions also had no effect on weight, whereas interventions for other conditions showed suggestive benefits in some but not all cases.
What Do These Findings Mean?
These findings provide mixed evidence for the effectiveness of health intervention delivery to health-care consumers using mobile technologies. Moreover, they highlight the need for additional high-quality controlled trials of this mHealth application, particularly in low- and middle-income countries. Specifically, the demonstration that text messaging interventions increased adherence to antiretroviral therapy in a low-income setting and increased smoking cessation in a high-income setting provides some support for the inclusion of these two interventions in health-care services in similar settings. However, the effects of these two interventions need to be established in other settings and their cost-effectiveness needs to be measured before they are widely implemented. Finally, for other mobile technology–based interventions designed to change health behaviors or to improve self-management of chronic diseases, the results of this systematic review suggest that the interventions need to be optimized before further trials are undertaken to establish their clinical benefits.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001362.
A related PLOS Medicine Research Article by Free et al. investigates the ability of mHealth technologies to improve health-care service delivery processes
Wikipedia has a page on mHealth (note: Wikipedia is a free online encyclopedia that anyone can edit; available in several languages)
mHealth: New horizons for health through mobile technologies is a global survey of mHealth prepared by the World Health Organization’s Global Observatory for eHealth (eHealth is health-care practice supported by electronic processes and communication)
The mHealth in Low-Resource Settings website, which is maintained by the Netherlands Royal Tropical Institute, provides information on the current use, potential, and limitations of mHealth in low-resource settings
More information about Txt2stop is available, the UK National Health Service Choices website provides an analysis of the Txt2stop trial and what its results mean, and the UK National Health Service Smokefree website provides a link to a Quit App for the iPhone
The US Centers for Disease Control and Prevention has launched a text messaging service that delivers regular health tips and alerts to mobile phones
doi:10.1371/journal.pmed.1001362
PMCID: PMC3548655  PMID: 23349621
20.  The experience of living with chronic heart failure: a narrative review of qualitative studies 
Background
Chronic heart failure (CHF) is the leading cause of all hospitalisations and readmissions in older people, accounting for a large proportion of developed countries' national health care expenditure. CHF can severely affect people's quality of life by reducing their independence and ability to undertake certain activities of daily living, as well as affecting their psychosocial and economic capacity. This paper reports the findings of a systematic narrative review of qualitative studies concerning people's experience of living with CHF, aiming to develop a wide-ranging understanding of what is known about the patient experience.
Methods
We searched eight relevant electronic databases using the terms based on the diagnosis of 'chronic heart failure', 'heart failure' and 'congestive heart failure' and qualitative methods, with restrictions to the years 1990-May 2008. We also used snowballing, hand searching and the expert knowledge of the research team to ensure all relevant papers were included in the review. Of 65 papers collected less than half (n = 30) were found relevant for this review. These papers were subsequently summarised and entered into QSR NVivo7 for data management and analysis.
Results
The review has identified the most prominent impacts of CHF on a person's everyday life including social isolation, living in fear and losing a sense of control. It has also identified common strategies through which patients with CHF manage their illness such as sharing experiences and burdens with others and being flexible to changing circumstances.
Finally, there are multiple factors that commonly impact on patients' self care and self-management in the disease trajectory including knowledge, understanding and health service encounters. These health service encounters encompass access, continuity and quality of care, co-morbid conditions, and personal relationships.
Conclusions
The core and sub-concepts identified within this study provide health professionals, service providers, policy makers and educators with broad insights into common elements of people's experiences of CHF and potential options for improving their health and wellbeing. Future studies should focus on building a comprehensive picture of CHF through examination of differences between genders, and differences within age groups, socioeconomic groups and cultural groups.
doi:10.1186/1472-6963-10-77
PMCID: PMC2851714  PMID: 20331904
21.  Reconciling employment with caring for a husband with an advanced illness 
Background
Little is known about combining work with caring for a person with advanced illness. This is important given the increasing number of women in the workforce and current policy seeking to increase care in the community. The aim of this paper was to explore the meaning of work for women caring for a husband with an advanced illness and the consequences of combining these two roles.
Methods
A purposive sample of 15 carers was recruited from a hospital and from the community, via the patients they cared for. Their illnesses included chronic obstructive pulmonary disease, cancer, motor neurone disease, and heart failure. Data were collected through semi-structured, in-depth interviews that were tape-recorded and transcribed verbatim. A Grounded Theory approach was used and case studies were developed. NVivo software facilitated the management and analysis of the data.
Results
Caring presented challenges to carers' work life. It diminished productivity or the quality of work, and led to missed opportunities for promotion. Work had an effect on the quality of care and the relationship with the patient, which eventually led to work being given up for caring. Three carers resisted the pressures to give up work and used it as a coping strategy.
Conclusion
A positive choice to remain in employment does not necessarily signal reluctance to care. Caring arrangements need to be understood from the common and separate interests of carers and the people they support.
doi:10.1186/1472-6963-9-216
PMCID: PMC2790453  PMID: 19939262
22.  A comparison of specialist rehabilitation and care assistant support with specialist rehabilitation alone and usual care for people with Parkinson's living in the community: study protocol for a randomised controlled trial 
Trials  2011;12:250.
Background
Parkinson's Disease is a degenerative neurological condition that causes movement problems and other distressing symptoms. People with Parkinson's disease gradually lose their independence and strain is placed on family members. A multidisciplinary approach to rehabilitation for people with Parkinson's is recommended but has not been widely researched. Studies are needed that investigate cost-effective community-based service delivery models to reduce disability and dependency and admission to long term care, and improve quality of life.
Methods
A pragmatic three parallel group randomised controlled trial involving people with Parkinson's Disease and live-in carers (family friends or paid carers), and comparing: management by a specialist multidisciplinary team for six weeks, according to a care plan agreed between the professionals and the patient and carer (Group A); multidisciplinary team management and additional support for four months from a trained care assistant (Group B); usual care, no coordinated team care planning or ongoing support (Group C). Follow up will be for six months to determine the impact and relative cost-effectiveness of the two interventions, compared to usual care. The primary outcomes are disability (patients) and strain (carers). Secondary outcomes include patient mobility, falls, speech, pain, self efficacy, health and social care use; carer general health; patient and carer social functioning, psychological wellbeing, health related quality of life. Semi structured interviews will be undertaken with providers (team members, care assistants), service commissioners, and patients and carers in groups A and B, to gain feedback about the acceptability of the interventions. A cost - effectiveness evaluation is embedded in the trial.
Discussion
The trial investigates components of recent national policy recommendations for people with long term conditions, and Parkinson's Disease in particular, and will provide guidance to inform local service planning and commissioning.
Trial registration
ISRCTN: ISRCTN44577970
doi:10.1186/1745-6215-12-250
PMCID: PMC3261836  PMID: 22112960
Parkinson's disease; Multidisciplinary rehabilitation; Domiciliary; Randomised controlled trial
23.  Risk Factors for Severe Outcomes following 2009 Influenza A (H1N1) Infection: A Global Pooled Analysis 
PLoS Medicine  2011;8(7):e1001053.
This study analyzes data from 19 countries (from April 2009 to Jan 2010), comprising some 70,000 hospitalized patients with severe H1N1 infection, to reveal risk factors for severe pandemic influenza, which include chronic illness, cardiac disease, chronic respiratory disease, and diabetes.
Background
Since the start of the 2009 influenza A pandemic (H1N1pdm), the World Health Organization and its member states have gathered information to characterize the clinical severity of H1N1pdm infection and to assist policy makers to determine risk groups for targeted control measures.
Methods and Findings
Data were collected on approximately 70,000 laboratory-confirmed hospitalized H1N1pdm patients, 9,700 patients admitted to intensive care units (ICUs), and 2,500 deaths reported between 1 April 2009 and 1 January 2010 from 19 countries or administrative regions—Argentina, Australia, Canada, Chile, China, France, Germany, Hong Kong SAR, Japan, Madagascar, Mexico, the Netherlands, New Zealand, Singapore, South Africa, Spain, Thailand, the United States, and the United Kingdom—to characterize and compare the distribution of risk factors among H1N1pdm patients at three levels of severity: hospitalizations, ICU admissions, and deaths. The median age of patients increased with severity of disease. The highest per capita risk of hospitalization was among patients <5 y and 5–14 y (relative risk [RR] = 3.3 and 3.2, respectively, compared to the general population), whereas the highest risk of death per capita was in the age groups 50–64 y and ≥65 y (RR = 1.5 and 1.6, respectively, compared to the general population). Similarly, the ratio of H1N1pdm deaths to hospitalizations increased with age and was the highest in the ≥65-y-old age group, indicating that while infection rates have been observed to be very low in the oldest age group, risk of death in those over the age of 64 y who became infected was higher than in younger groups. The proportion of H1N1pdm patients with one or more reported chronic conditions increased with severity (median = 31.1%, 52.3%, and 61.8% of hospitalized, ICU-admitted, and fatal H1N1pdm cases, respectively). With the exception of the risk factors asthma, pregnancy, and obesity, the proportion of patients with each risk factor increased with severity level. For all levels of severity, pregnant women in their third trimester consistently accounted for the majority of the total of pregnant women. Our findings suggest that morbid obesity might be a risk factor for ICU admission and fatal outcome (RR = 36.3).
Conclusions
Our results demonstrate that risk factors for severe H1N1pdm infection are similar to those for seasonal influenza, with some notable differences, such as younger age groups and obesity, and reinforce the need to identify and protect groups at highest risk of severe outcomes.
Please see later in the article for the Editors' Summary
Editors' Summary
Background
In April 2009, a new strain of influenza A H1N1 was first identified in Mexico and the United States and subsequently spread around the world. In June 2009, the World Health Organization (WHO) declared a pandemic alert phase 6, which continued until August 2010. Throughout the pandemic, WHO and member states gathered information to characterize the patterns of risk associated with the new influenza A H1N1 virus infection and to assess the clinical picture. Although risk factors for severe disease following seasonal influenza infection have been well documented in many countries (for example, pregnancy; chronic medical conditions such as pulmonary, cardiovascular, renal, hepatic, neuromuscular, hematologic, and metabolic disorders; some cognitive conditions; and immunodeficiency), risk factors for severe disease following infection early in the 2009 H1N1 pandemic were largely unknown.
Why Was This Study Done?
Many countries have recently reported data on the association between severe H1N1 influenza and a variety of underlying risk factors, but because these data are presented in different formats, making direct comparisons across countries is difficult, with no clear consensus for some conditions. Therefore, to assess the frequency and distribution of known and new potential risk factors for severe H1N1 infection, this study was conducted to collect data (from 1 April 2009 to 1 January 2010) from surveillance programs of the Ministries of Health or National Public Health Institutes in 19 countries―Argentina, Australia, Canada, Chile, China, France, Germany, Hong Kong (special administrative region), Japan, Madagascar, Mexico, the Netherlands, New Zealand, Singapore, South Africa, Spain, Thailand, the United States, and the United Kingdom.
What Did the Researchers Do and Find?
As part of routine surveillance, countries were asked to provide risk factor data on laboratory-confirmed H1N1 in patients who were admitted to hospital, admitted to the intensive care unit (ICU), or had died because of their infection, using a standardized format. The researchers grouped potential risk conditions into four categories: age, chronic medical illnesses, pregnancy (by trimester), and other conditions that were not previously considered as risk conditions for severe influenza outcomes, such as obesity. For each risk factor (except pregnancy), the researchers calculated the percentage of each group of patients using the total number of cases reported in each severity category (hospitalization, admission to ICU, and death). To evaluate the risk associated with pregnancy, the researchers used the ratio of pregnant women to all women of childbearing age (age 15–49 years) at each level of severity to describe the differences between levels.
The researchers were able to collect data on approximately 70,000 patients requiring hospitalization, 9,700 patients admitted to the ICU, and 2,500 patients who died from H1N1 infection. The proportion of patients with H1N1 with one or more reported chronic conditions increased with severity—the median was 31.1% of hospitalized patients, 52.3% of patients admitted to the ICU, and 61.8% of patients who died. For all levels of severity, pregnant women in their third trimester consistently accounted for the majority of the total of pregnant women. The proportion of patients with obesity increased with increasing disease severity—median of 6% of hospitalized patients, 11.3% of patients admitted to the ICU, and 12.0% of all deaths from H1N1.
What Do These Findings Mean?
These findings show that risk factors for severe H1N1 infection are similar to those for seasonal influenza, with some notable differences: a substantial proportion of people with severe and fatal cases of H1N1 had pre-existing chronic illness, which indicates that the presence of chronic illness increases the likelihood of death. Cardiac disease, chronic respiratory disease, and diabetes are important risk factors for severe disease that will be especially relevant for countries with high rates of these illnesses. Approximately 2/3 of hospitalized people and 40% of people who died from H1N1 infection did not have any identified pre-existing chronic illness, but this study was not able to comprehensively assess how many of these cases had other risk factors, such as pregnancy, obesity, smoking, and alcohol misuse. Because of large differences between countries, the role of risk factors such as obesity and pregnancy need further study—although there is sufficient evidence to support vaccination and early intervention for pregnant women. Overall, the findings of this study reinforce the need to identify and target high-risk groups for interventions such as immunization, early medical advice, and use of antiviral medications.
Additional Information
Please access these Web sites via the online version of this summary at http://dx.doi.org/10.1371/journal.pmed.1001053.
WHO provides a Global Alert and Response (GAR) with updates on a number of influenza-related topics
The US Centers for Disease Control and Prevention provides information on risk factors and H1N1
doi:10.1371/journal.pmed.1001053
PMCID: PMC3130021  PMID: 21750667
24.  Describing and analysing primary health care system support for chronic illness care in Indigenous communities in Australia's Northern Territory – use of the Chronic Care Model 
Background
Indigenous Australians experience disproportionately high prevalence of, and morbidity and mortality from chronic illness such as diabetes, renal disease and cardiovascular disease. Improving the understanding of how Indigenous primary care systems are organised to deliver chronic illness care will inform efforts to improve the quality of care for Indigenous people.
Methods
This cross-sectional study was conducted in 12 Indigenous communities in Australia's Northern Territory. Using the Chronic Care Model as a framework, we carried out a mail-out survey to collect information on material, financial and human resources relating to chronic illness care in participating health centres. Follow up face-to-face interviews with health centre staff were conducted to identify successes and difficulties in the systems in relation to providing chronic illness care to community members.
Results
Participating health centres had distinct areas of strength and weakness in each component of systems: 1) organisational influence – strengthened by inclusion of chronic illness goals in business plans, appointment of designated chronic disease coordinators and introduction of external clinical audits, but weakened by lack of training in disease prevention and health promotion and limited access to Medicare funding; 2) community linkages – facilitated by working together with community organisations (e.g. local stores) and running community-based programs (e.g. "health week"), but detracted by a shortage of staff especially of Aboriginal health workers working in the community; 3) self management – promoted through patient education and goal setting with clients, but impeded by limited focus on family and community-based activities due to understaffing; 4) decision support – facilitated by distribution of clinical guidelines and their integration with daily care, but limited by inadequate access to and support from specialists; 5) delivery system design – strengthened by provision of transport for clients to health centres, separate men's and women's clinic rooms, specific roles of primary care team members in relation to chronic illness care, effective teamwork, and functional pathology and pharmacy systems, but weakened by staff shortage (particularly doctors and Aboriginal health workers) and high staff turnover; and 6) clinical information systems – facilitated by wide adoption of computerised information systems, but weakened by the systems' complexity and lack of IT maintenance and upgrade support.
Conclusion
Using concrete examples, this study translates the concept of the Chronic Care Model (and associated systems view) into practical application in Australian Indigenous primary care settings. This approach proved to be useful in understanding the quality of primary care systems for prevention and management of chronic illness. Further refinement of the systems should focus on both increasing human and financial resources and improving management practice.
doi:10.1186/1472-6963-8-112
PMCID: PMC2430955  PMID: 18505591
25.  Integrating telecare for chronic disease management in the community: What needs to be done? 
Background
Telecare could greatly facilitate chronic disease management in the community, but despite government promotion and positive demonstrations its implementation has been limited. This study aimed to identify factors inhibiting the implementation and integration of telecare systems for chronic disease management in the community.
Methods
Large scale comparative study employing qualitative data collection techniques: semi-structured interviews with key informants, task-groups, and workshops; framework analysis of qualitative data informed by Normalization Process Theory. Drawn from telecare services in community and domestic settings in England and Scotland, 221 participants were included, consisting of health professionals and managers; patients and carers; social care professionals and managers; and service suppliers and manufacturers.
Results
Key barriers to telecare integration were uncertainties about coherent and sustainable service and business models; lack of coordination across social and primary care boundaries, lack of financial or other incentives to include telecare within primary care services; a lack of a sense of continuity with previous service provision and self-care work undertaken by patients; and general uncertainty about the adequacy of telecare systems. These problems led to poor integration of policy and practice.
Conclusion
Telecare services may offer a cost effective and safe form of care for some people living with chronic illness. Slow and uneven implementation and integration do not stem from problems of adoption. They result from incomplete understanding of the role of telecare systems and subsequent adaption and embeddedness to context, and uncertainties about the best way to develop, coordinate, and sustain services that assist with chronic disease management. Interventions are therefore needed that (i) reduce uncertainty about the ownership of implementation processes and that lock together health and social care agencies; and (ii) ensure user centred rather than biomedical/service-centred models of care.
doi:10.1186/1472-6963-11-131
PMCID: PMC3116473  PMID: 21619596

Results 1-25 (1121960)