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Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research.

ABSTRACT: 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.

SUBMITTER: Gallacher K

PROVIDER: S-EPMC3692487 | biostudies-other | 2013

REPOSITORIES: biostudies-other

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Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research.

Gallacher Katie K Morrison Deborah D Jani Bhautesh B Macdonald Sara S May Carl R CR Montori Victor M VM Erwin Patricia J PJ Batty G David GD Eton David T DT Langhorne Peter P Mair Frances S FS

PLoS medicine 20130625 6

<h4>Background</h4>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.<h4>Methods and findings</h4>The search strategy centred on: stroke, treatment burden, patient experience, and qualitative methods. We sea ...[more]

PMID: 23824703

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Project description:BACKGROUND: Therapeutic inertia has been defined as the failure of health-care provider to initiate or intensify therapy when therapeutic goals are not reached. It is regarded as a major cause of uncontrolled hypertension. The exploration of its causes and the interventions to reduce it are plagued by unclear conceptualizations and hypothesized mechanisms. We therefore systematically searched the literature for definitions and discussions on the concept of therapeutic inertia in hypertension in primary care, to try and form an operational definition. METHODS: A systematic review of all types of publications related to clinical inertia in hypertension was performed. Medline, EMbase, PsycInfo, the Cochrane library and databases, BDSP, CRD and NGC were searched from the start of their databases to June 2013. Articles were selected independently by two authors on the basis of their conceptual content, without other eligibility criteria or formal quality appraisal. Qualitative data were extracted independently by two teams of authors. Data were analyzed using a constant comparative qualitative method. RESULTS: The final selection included 89 articles. 112 codes were grouped in 4 categories: terms and definitions (semantics), "who" (physician, patient or system), "how and why" (mechanisms and reasons), and "appropriateness". Regarding each of these categories, a number of contradictory assertions were found, most of them relying on little or no empirical data. Overall, the limits of what should be considered as inertia were not clear. A number of authors insisted that what was considered deleterious inertia might in fact be appropriate care, depending on the situation. CONCLUSIONS: Our data analysis revealed a major lack of conceptualization of therapeutic inertia in hypertension and important discrepancies regarding its possible causes, mechanisms and outcomes. The concept should be split in two parts: appropriate inaction and inappropriate inertia. The development of consensual and operational definitions relying on empirical data and the exploration of the intimate mechanisms that underlie these behaviors are now needed.

Project description:BACKGROUND:'Treatment burden', defined as both the workload and impact of treatment regimens on function and well-being, has been associated with poor adherence and unfavourable outcomes. Previous research focused on treatment workload but our understanding of treatment impact is limited. This research aimed to systematically review qualitative research to identify: 1) what are the treatment generated disruptions experienced by patients across all chronic conditions and treatments? 2) what strategies do patients employ to minimise these treatment generated disruptions? METHODS AND FINDINGS:The search strategy centred on: treatment burden and qualitative methods. Medline, CINAHL, Embase, and PsychINFO were searched electronically from inception to Dec 2013. No language limitations were set. Teams of two reviewers independently conducted paper screening, data extraction, and data analysis. Data were analysed using framework synthesis informed by Cumulative Complexity Model. Eleven papers reporting data from 294 patients, across a range of conditions, age groups and nationalities were included. Treatment burdens were experienced as a series of disruptions: biographical disruptions involved loss of freedom and independence, restriction of meaningful activities, negative emotions and stigma; relational disruptions included strained family and social relationships and feeling isolated; and, biological disruptions involved physical side-effects. Patients employed "adaptive treatment work" and "rationalised non-adherence" to minimise treatment disruptions. Rationalised non-adherence was sanctioned by health professionals at end of life; at other times it was a "secret-act" which generated feelings of guilt and impacted on family and clinical relationships. CONCLUSIONS:Treatments generate negative emotions and physical side effects, strain relationships and affect identity. Patients minimise these disruptions through additional adaptive work and/or by non-adherence. This affects physical outcomes and care relationships. There is a need for clinicians to engage with patients in honest conversations about treatment disruptions and the 'adhere-ability' of recommended regimens. Patient-centred practice requires management plans which optimise outcomes and minimise disruptions.

Project description:Introduction: Multimorbidity is increasingly important due to its high disease burden, prevalence and related high healthcare utilisation. For patients, there is also a high financial burden due to direct and indirect costs arising from their multimorbidity. It is unclear how this financial burden affects patients. This study aims to synthesise qualitative evidence exploring the experience of financial burden from the perspective of patients with multimorbidity. Methods: The review will be reported using the ENTREQ guidelines. A systematic search of Lilacs, PubMed, CINAHL, EMBASE, PsycINFO, and Applied Social Sciences Index and Abstracts will be conducted using a predefined search strategy. A search of fourteen pre-specified websites will be conducted for grey literature. Forward and backward citation checking of included studies will be conducted also. Studies will be included if they contain primary qualitative research and reference the experience of financial burden from the perspective of adult (? 18 years) community dwelling patients with multimorbidity. Studies from any country and in any language will be included. Titles and abstracts of search results will be screened; if a study appears relevant, then full-texts will be screened for eligibility. Study characteristics of included articles will be extracted. Study quality will be evaluated using the critical appraisal skills programme (CASP) checklist for qualitative research. These three processes will be carried out by two reviewers independently. Thematic-synthesis will be used to analyse data. This will be carried out by one reviewer and cross-checked by a second reviewer. The GRADE CERQual approach will be used to assess the overall confidence in the evidence. Discussion: This review will identify evidence on the experiences of financial burden for patients with multimorbidity and forms part of a project to support consideration of financial burden for patients in the development of clinical guidelines in Ireland. PROSPERO registration number: CRD42019135284.

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Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research.

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Uncovering treatment burden as a key concept for stroke care: a systematic review of qualitative research.

Similar Datasets

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