DTE is currently receiving federal funding from the U.S. National Institutes of Health (National Institute of Nursing Research) to conduct research on the burden of treatment concept. Grant number: 1R21NR012984-01A1. FSM and CRM have also received funding from the ESRC previously to help develop a NPT web enabled toolkit. All other authors have declared that no competing interests exist.
Conceived and designed the experiments: KG DM BJ SM CRM VMM PJE GDB DTE PL FSM. Analyzed the data: KG DM BJ SM CRM VMM FSM. Contributed reagents/materials/analysis tools: KG CRM VMM FSM. Wrote the first draft of the manuscript: KG FSM. Contributed to the writing of the manuscript: KG DM BJ SM CRM VMM PJE GDB DTE PL FSM.
In a systematic review of qualitative research, Katie Gallacher and colleagues examine the evidence related to treatment burden after stroke from the patient perspective.
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.
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.
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.
International Prospective Register of Systematic Reviews
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.
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.
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.
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.
Please access these Web sites via the online version of this summary at
The US National Institute of Neurological Disorders and Stroke provides information about all aspects of
The Internet Stroke Center provides detailed information about
The UK National Health Service Choices website also provides information about
MedlinePlus has links to additional resources about
The UK not-for-profit website
Wikipedia provides information on the
‘Treatment burden’ is a novel concept describing the self-care practices that patients with chronic disease must perform to enact management strategies and respond to the demands of health care providers and systems. Individuals will vary in their capacity to accommodate and enact such practices, which may have a marked impact on patient functioning and well-being
There has recently been a growing interest in the development of a patient-reported outcome measure of treatment burden in chronic disease, to be utilised by health care providers alongside consideration of patient capacity
Cerebrovascular disease (stroke) is the leading cause of long-term disability in both the UK and the US
There is a significant evidence base to support both rehabilitative and secondary preventative therapies in stroke
A protocol was created and the review registered on PROSPERO, the International Prospective Register of Systematic Reviews (CRD42011001123,
The review methods have been described in detail elsewhere
We included qualitative studies that explored the adult patient experience of stroke management in any setting (e.g., primary care, secondary care, outpatient, nursing home) and provided information on treatment burden. Full details of inclusion and exclusion criteria for papers are shown in
Title, abstract and full paper screening, data extraction and analysis were undertaken by two individuals with a third party involved for any disagreements. Data extracted for analysis were limited to those describing a range of treatment burdens and to author comments rather than primary data or verbatim quotes. Details of the data extraction instruments developed and used are published elsewhere
During data analysis, data on treatment burden were extracted from the authors' results and discussion sections; each item was then coded independently by two researchers using the coding framework underpinned by NPT (
A pragmatic approach was then taken to further analyse and reorganise themes into a taxonomy of treatment burden under headings that reflect different processes of stroke care. Themes were then examined in relation to our theoretical framework in order to develop a robust conceptual model of treatment burden in stroke. Several meetings were held between researchers to discuss the emergence of themes and the creation of the taxonomy and conceptual model. We then examined this taxonomy and conceptual model and noted any relationships between components or apparent causal processes, in order to make suggestions for future areas of research or improvements to health service delivery
Quality appraisal was based upon published guidance by well-known qualitative researchers
Appraisal Question | Yes | No | Unclear |
Does the research, as reported, illuminate the subjective meaning, actions, and context of those being researched? | 68 | 0 | 1 |
Are subjective perceptions and experiences treated as knowledge in their own right? | 68 | 0 | 1 |
Is there evidence of adaption and responsiveness of the research design to the circumstances and issues of real-life social settings during the course of the study? | 39 | 27 | 3 |
Does the sample produce the type of knowledge necessary to understand the structures and processes within which the individuals or situations are located? | 62 | 3 | 4 |
Is the description detailed enough to allow the researcher or reader to interpret the meaning and context of what is being researched? | 66 | 3 | 0 |
Are any different sources of knowledge about the same issue compared and contrasted? | 38 | 31 | 0 |
Has the researcher rendered transparent the processes by which data were collected, analysed, and presented? | 67 | 2 | 0 |
Has the researcher made clear his or her own possible influence on the data? | 24 | 43 | 2 |
Is it clear how the research moves from a description of the data, through quotation or examples, to an analysis and interpretation of the meaning and significance of it? | 65 | 4 | 0 |
Are claims being made for the generalisability of the findings to either other bodies of knowledge or to other populations or groups? | 50 | 17 | 2 |
Is there any other aspect of the study that may affect quality, e.g., conflict of interest? | 1 | 31 | 37 |
Each study was appraised using the questions shown in the table. The number of studies with the answers ‘yes’, ‘no’, or ‘unclear’ are shown for each question.
In total, 5,892 papers were identified, and 69 subsequently met our inclusion criteria.
Inclusions and exclusions are shown at each stage.
None of the included studies stated the investigation of treatment burden as a research objective, but all contained substantial amounts of information on treatment burden in the results or discussion section
Key descriptive information of included papers is as follows. Country of study: Sweden (n=19)
A summary of the quality appraisal of included studies is shown in
We identified four main areas of treatment burden from the literature: (1) making sense of stroke management and planning care; (2) interacting with others, including health professionals, family, and other stroke patients; (3) enacting management strategies, which includes (a) enduring institutional admissions, (b) managing stroke in the community, (c) reintegrating into society, and (d) adjusting to life after stroke; and (4) reflecting on management.
The arrows represent the possible pathways between components that stroke patients may follow. The ‘enacting management strategies’ component has four subcomponents.
Treatment burden category | Taxonomy |
(1) Making sense of stroke management and planning care | Making sense of symptoms to aid diagnosis and seek help |
Understanding investigations, acute interventions, medications, risk factor modification, and medical terminology | |
Information gathering from health professionals, enduring poor information provision | |
Enduring poor information for carers and families from health services | |
Carrying out research external to health services | |
Understanding the roles of different health professionals | |
Working out priorities for rehabilitation | |
Goal setting | |
Gaining motivation | |
Taking responsibility and using initiative, drawing on former life skills | |
Managing uncertainty of prognosis | |
Problem solving | |
Developing coping strategies | |
Experiencing negative emotions associated with management strategy, e.g., guilt, frustration | |
Using spirituality | |
(2) Interacting with others | Seeking advice or reassurance from health professionals |
Contacting health professionals for practical help | |
Developing relationships with health professionals | |
Coping with paternalism from health professionals | |
Enduring a lack of understanding from health professionals | |
Coping with mismatched ideas about management and recovery with others | |
Misdiagnosis at initial presentation | |
Having difficulty accessing services | |
Experiencing poor communication between services | |
Enduring poor continuity of care and consistency of services | |
Arranging social care | |
Gaining emotional support from friends and family | |
Gaining practical support from family and friends | |
Experiencing a strain on relationships due to management strategies | |
Protecting carers from their burden | |
Gaining support from other stroke patients and support groups | |
Experiencing stigmatisation due to management of physical disabilities | |
3) Enacting management strategies | |
(3a) Institutional admissions | Undergoing acute care |
Undergoing inpatient rehabilitation | |
Fitting into ward routines | |
Loss of autonomy and dignity as an inpatient | |
Unfamiliar or unpleasant surroundings on the ward | |
Admission to a care home | |
Learning self-care skills to prepare for discharge | |
(3b) Managing stroke in the community | Discharge from hospital |
Poor access to services in the community | |
Undergoing rehabilitation programmes in the community | |
Taking and managing risks during rehabilitation | |
Reaching goals | |
Establishing and adhering to a medication regime | |
Enduring medication side effects | |
Managing risk factors | |
Adjusting diet | |
Managing eating difficulties | |
Managing psychological difficulties | |
Managing pain | |
Regaining communication skills | |
Taking physical exercise | |
Managing co-morbidities | |
Adapting the home environment or finding new accommodation | |
Enduring inadequate home services | |
Coping with multiple health-related appointments | |
(3c) Reintegrating into society | Returning to driving or negotiating new methods of transport |
Returning to work | |
Acquiring mobility and technical aids | |
Negotiating environmental barriers to wheelchair use | |
Managing financial difficulties | |
Negotiating government benefit systems | |
(3d) Adjusting to life after stroke | New daily structure to accommodate illness management |
Relearning ways of doing familiar tasks | |
Planning activities ahead of time | |
Adopting strategies to deal with physical disabilities | |
Adopting strategies to deal with cognitive disabilities | |
Searching for a sense of self | |
Developing acceptance | |
Enduring a plateau in recovery | |
Changing expectations and examining priorities over the recovery period | |
(4) Reflecting on management | Decision making about treatments |
Shared decision making about treatments | |
Monitoring progress in recovery | |
Gauging recovery by comparing self to others | |
Self monitoring for further signs of stroke | |
Maintaining confidence in care plan | |
Keeping up to date with new treatments |
A taxonomy of treatment burden in stroke, grouped within categories that correspond to the conceptual model of treatment burden shown in
During the management of their stroke, patients are required to comprehend a large amount of information
Patients report that they frequently encounter barriers to receiving information from health services in that the provision of information is lacking, inadequate time is allocated, timing is inappropriate, or information is given in a form that is incomprehensible
Patients also reported that access to information following the consultation is insufficient
Patients often have multiple health care providers, as they interact with a variety of services including health and social care. They describe it as challenging to make sense of and to differentiate between the roles of different individuals and services, for example whom to contact for advice once discharged from hospital
Several investigators describe the cognitive processing that patients carry out when managing their stroke. They carefully plan their care, make calculated decisions about their contribution to management, prioritise treatments, and set goals for recovery
Patients develop expectations of themselves and their health care providers and work at maintaining motivation during the long recovery process
Along with making sense of stroke and its management, much effort is allocated to engaging with a range of health professionals both in hospital and in the community for emotional support and practical help
Many patients report dissatisfaction in their contact with health professionals, complaining of misdiagnosis at initial presentation of stroke
Patients arrange social care
Patients report developing relationships with fellow patients and support groups who provide them with moral support
Enacting work takes many forms and includes the work of enduring institutional admissions, managing stroke in the community, reintegrating into society, and adjusting to life after stroke. We now describe each of these in turn.
Stroke patients undergo admission to hospital for acute care
During the rehabilitation process they adjust to their new physical abilities and learn self-care practices to prepare for discharge
C
Patients may receive personal care from hospital staff whilst on the ward, and men report finding this harder to endure than women, describing a feeling of vulnerability. They develop strategies to cope with the situation
The transition from inpatient care to the home is an important and often challenging time for patients
One study carried out in Nigeria reported that even physiotherapy services paid for by patients have inadequate equipment available
Once home, patients follow routines and integrate management strategies into their everyday lives, for example changing their diet, incorporating physical exercise, and managing risk factors
Patients are frequently required to acquire equipment and make adaptations to their home to accommodate new disabilities, with one complaint being that new equipment takes up too much space, jeopardising the comfort of their home
In this period of time after discharge from inpatient care, the patient schedule is often extremely busy with health care appointments
Only one paper discusses the difficulties of managing co-morbidities alongside stroke, with treatments conflicting with one another and predisposing disabilities interfering with rehabilitation
Once home, patients strive to reintegrate into society. Following their stroke, they are usually prohibited to drive for a set period and may be required to take a test set by driving authorities
With regards to financial issues, these are likely to vary from country to country depending on the health care system and welfare provision available
However, patients in developed countries with government funded health care systems also report suffering financially due to the need to purchase special equipment such as mobility aids and adapted cutlery themselves, or relying on low technology devices due to a lack of economic resources
Following a stroke, patients create a new daily structure to accommodate their new disabilities and treatments
Following a stroke, patients describe adapting psychologically to their circumstances. They manage this process by searching for a sense of self
Patients must make decisions about their health care, requiring an appraisal of their treatments, either with the help of health care providers
Patients commonly reflect on their achievements and self monitor progress to make judgements about their success
To the best of our knowledge, this is the first qualitative systematic review to explore treatment burden in stroke. None of the included papers comprehensively covered the entire patient experience of treatment burden; rather each one explored in depth a particular aspect of management or the patient experience in a specific context. Therefore, this review offers a comprehensive taxonomy and conceptual model of treatment burden in stroke. Using this taxonomy, we have been able to examine relationships between components of treatment burden and theorize causal processes. In turn, we shall now make recommendations about areas of health care provision requiring attention from clinicians and policy makers, and areas where further research is required.
A key finding from this review is that stroke patients spend substantial time and effort seeking out, cognitively processing, and reflecting on information about the management of stroke. There is also evidence that the provision of this information by health services is currently inadequate on a global basis. This resonates with previous literature on treatment burden in heart failure patients
In addition to poor provision of information by health services, the exchange of information between patient and professional generally appears to be substandard, resulting in a mismatch in ideas regarding goals and care preferences. This leads to patient dissatisfaction, a prerequisite for nonadherence to subsequent management plans, as confidence and motivation are negatively affected
The organisation of services at both macro and micro levels appears to significantly affect treatment burden. The papers in this review describe interactions between stroke patients and a variety of professionals including hospital doctors, nurses, general practitioners, speech and language therapists, physiotherapists, occupational therapists, and social workers. Because of the long-term nature of stroke rehabilitation, patients describe the importance of developing relationships with their therapists, but this is made difficult by poor continuity of care, in both the hospital and acute setting. Patients describe receiving ‘mixed messages’ from different carers who do not communicate with one another. Health professionals must establish good methods of communication with each other and provide individualised, holistic, patient-centred care. If case meetings cannot be carried out face to face then adequate secure methods of communication such as clinical email systems must be utilised.
These findings appear to resonate across various countries in our review; however, issues such as poor continuity of care are likely to depend on organisation of health care systems, which may vary substantially between countries and localities. Some services, for example, are available through government funded initiatives and others require payment at point of care, and the standard of these services are likely to vary considerably
Attending and planning appointments takes considerable time and effort from the patient, made all the more difficult by poorly organised, fragmented services. Patients are also required to manage often complicated medication regimes and endure any side effects. In westernised countries, patient care has moved away from being patient centred with subspecialisation of therapies and a focus on therapist- rather than patient-set goals
Another important treatment burden relates specifically to hospitalisation experiences. The hospital stay itself is frequently described by patients as unpleasant, with a lack of autonomy over treatments and loss of control over daily routines. Again, this is likely to vary significantly between localities. In this review, stroke patients describe spending long periods of time on rehabilitation wards feeling understimulated and bored. Younger patients describe a lack of tailoring of rehabilitation services to suit their needs. Such issues should be addressed by health care providers, particularly as initial results of recent randomised control trials have shown improved functional recovery associated with very early mobilisation following stroke
In the community, social care systems such as home helps and meal delivery systems are described as being of a very poor standard by patients, for example providing a very narrow range of food at inconvenient times of day. The provision of personal care such as help with showering also appears to be lacking. Improvements to these services are vital for adequate patient care as they provide the fundamental aspects of human functioning. Further qualitative work is required to explore these services in different localities, as information concerning this was limited within this review.
Patients describe having difficulty accessing care both as an inpatient and in the community. This resonates across both developed and developing countries in our review. Patients feel that time with therapists is too short, mirroring the lack of time spent imparting information as discussed above. Clinicians must ensure that time is available for consultations with patients. Although this may cost health services money in the short term, it will prevent nonadherence and therefore wasted expenditure in the longer term
Discharge from hospital is described as a particularly difficult time for patients, with a sense of abandonment without adequate preparation. Patients feel that services are terminated prematurely, and they feel uncertain whom to contact should they need help and advice. This is a very important step in the recovery process, and discharge should be timed appropriately so that services are in place and patients are armed with the appropriate information. Disabled patients need to acquire technical aids and make adaptations to the house, or to move to more appropriate accommodation, and should be supported as much as possible during this time. A point of continuous contact such as a stroke liaison nurse can improve patient satisfaction and support the process of discharge and community rehabilitation
Financial difficulties due to stroke management seemed to arise for patients in both developing and developed countries, although only two papers from developing countries were found, so this requires further exploration. In the developing countries, access to care appears to depend on the ability to self-fund therapies, whilst in countries with universal health care access, difficulties can arise when negotiating complicated systems; patients also often self-fund as a result of this.
Several papers discussed the psychological difficulties patients encounter during the recovery process, yet access to psychological therapy seems to be scarce. Patients describe spending time reflecting on their progress, adjusting to their new circumstances, and maintaining motivation. Better access to counselling or psychology services is therefore pertinent for stroke patients.
Two studies made gender comparisons of the patient experience of managing stroke
For the first time, our study approaches the management of stroke as a global set of practices carried out by patients in multiple contexts. The extent of treatment burden can be affected not only by the nature of illness but also by the micro- and macro-organisation of health services. We hypothesise that the components of treatment burden can amalgamate
Certain aspects of stroke management were mentioned less often than anticipated: the process of acute care, medications, social care, the stroke liaison nurse, and the use of new technologies. Only one study addressed multimorbidity
In comparison to our recent work on treatment burden in heart failure patients, there was less information available on the burden of medications, particularly polypharmacy, side effects, collecting prescriptions, altering routines as required, and drug interactions
However, one important similarity between this review and previous work with heart failure patients is that the care of patients with both chronic diseases is very sensitive to investments in service provision. Shifts from intensive care environments, such as rehabilitation centres, to self-help and community-based services may fundamentally change the burden of treatment from professionals to patients and caregivers. As our review documents, patients and caregivers are already burdened and perceive they gain inadequate support from health care services. Further work toward understanding how policy changes in health care affect the balance of burden and capacity for patients and caregivers is essential to assess these dynamic interactions.
A recent systematic review explored the conceptualization of treatment burden in chronic disease. This review examined attributes, antecedents, and consequences of treatment burden
A recent paper by Eton et al
Another recent paper, by Tran et al.
The search was limited to publications from the year 2000 and onwards. This date was chosen because our review is aimed at understanding current, rather than historical, patient experiences of stroke in order to inform current clinical practice and policy. Global management of stroke has changed in recent years with the introduction of stroke units and community rehabilitation programmes
Important strengths of our review are that we conducted an exhaustive search and our tight inclusion criteria allowed us to avoid collecting too broad a spectrum of methodologies, as high numbers of studies using extremely varied methods made in-depth analysis of the data and applicability of findings extremely challenging. Our approach helped us to maintain focus whilst producing a rich picture of stroke management. As a result, the number of studies included was considerable yet still feasible for the application of qualitative analysis. Finally, a particularly novel aspect of this review was our approach to data analysis using a coding framework underpinned by a robust theory, NPT. The use of framework synthesis
The large variation in research objectives of included studies means that a diverse range of treatment burdens are described. A major advantage to our review is that it pieces together information about treatment burden from various sources to create a more comprehensive picture than is usual for this type of study. However, one limitation is that the papers and therefore participants studied were heterogeneous, making comparisons between papers difficult, for example to compare papers from different countries. It is likely that there is significant variation in health system delivery between countries, including availability of services through state-sponsored insurance.
Both severity of stroke and level of disability are likely to influence treatment burden, yet both are generally poorly described in the included papers, and those that do describe them use varying measures and terminology. It could be argued that the most physically and mentally impaired may be the most burdened and the least likely to participate in research, a common problem in the research arena. For example, the papers that study aphasic patients describe a particular difficulty for these patients in communicating with therapists and carers, a perhaps unsurprising but important finding
We have created a comprehensive taxonomy of treatment burden underpinned by international research which has the potential to drive service improvement. The aim of this review is not to produce a taxonomy that is universally generalisable, but one that gives insight into the scope of burdens experienced by patients and can inform the development of measures and interventions. Our taxonomy suggests that treatment burden in stroke can be broadly categorised into: (1) making sense of stroke management and planning care, (2) interacting with others, (3) enacting management strategies, and 4) reflecting on management. Patients describe care as fragmented and lacking in continuity, with poor communication between patient and clinician and between health care providers. Information provision is generally poor, and patients would like clinicians to spend more time with them. There is considerable room for improvement in both inpatient and community services.
Treatment burden appears to be greatly affected by the micro and macro organisation of health services, which is likely to vary considerably between localities. Further work is recommended to better understand the patient experience of treatment burden in stroke in varying contexts and to explore how it may vary by patient demographic or clinical characteristics. Treatment burden should be investigated in relation to other chronic diseases, and importantly in patients with multiple morbidities. This could inform the generation of a patient-reported outcome measure to be utilised by both policy makers and health care providers, and could serve as a new goal for quality improvement.
(DOC)
(DOC)
(DOCX)
(XLSX)
(XLSX)
(DOC)
(DOC)
(DOC)
The authors are members of the International Minimally Disruptive Medicine Workgroup (Frances S Mair, Carl R May, Victor M Montori, Katie Gallacher, Sara Macdonald, David T Eton, Nathan Shippee, Deborah Morrison, Bhautesh Jani, Susan Browne, David Blane, Nilay Shah, Patricia Erwin, Kathleen Yost, Alison Richardson, and Sara Demain) and would like to thank the other members for their conceptual assistance.
We would like to thank Jane Goodfellow for her assistance in the design of
Normalization Process Theory