Dataset Information

Patient-experienced burden of treatment in patients with multimorbidity - A systematic review of qualitative data.

ABSTRACT:

Objective

To synthesize existing qualitative literature on patient-experienced burden of treatment in multimorbid patients.

Methods

A literature search identified available qualitative studies on the topic of burden of treatment in multimorbidity and meta-ethnography was applied as method. The authors' original findings were preserved, but also synthesized to new interpretations to investigate the concept of the burden of treatment using the Cumulative Complexity Model.

Results

Nine qualitative studies were identified. The majority of the 1367 participants from 34 different countries were multimorbid. The treatment burden components, experienced by patients, were identified for each study. The components financial burden, lack of knowledge, diet and exercise, medication burden and frequent healthcare reminding patients of their health problem were found to attract additional attention from the multimorbid patients. In studies conducted in the US and Australia the financial burden and the time and travel burden were found most straining to patients with deprived socioeconomic status. The burden of treatment was found to be a complex concept consisting of many different components and factors interacting with each other. The size of the burden was associated to the workload of demands (number of conditions, number of medications and health status), the capacity (cognitive, physical and financial resources, educational level, cultural background, age, gender and employment conditions) and the context (structure of healthcare and social support). Patients seem to use strategies such as prioritizing between treatments to diminish the workload and mobilizing and coordinating resources to improve their ability to manage the burden of treatment. They try to routinize and integrate the treatment into their daily lives, which might be a way to maintain the balance between workload and capacity.

Conclusions

Healthcare providers need to increase the focus on minimizing multimorbid patients' burden of treatment. Findings in this review suggest that the weight of the burden needs to be established in the individual patient and components of the burden must be identified.

SUBMITTER: Rosbach M

PROVIDER: S-EPMC5482482 | biostudies-literature | 2017

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Patient-experienced burden of treatment in patients with multimorbidity - A systematic review of qualitative data.

Rosbach Michael M Andersen John Sahl JS

PloS one 20170623 6

<h4>Objective</h4>To synthesize existing qualitative literature on patient-experienced burden of treatment in multimorbid patients.<h4>Methods</h4>A literature search identified available qualitative studies on the topic of burden of treatment in multimorbidity and meta-ethnography was applied as method. The authors' original findings were preserved, but also synthesized to new interpretations to investigate the concept of the burden of treatment using the Cumulative Complexity Model.<h4>Results ...[more]

PMID: 28644877

Similar Datasets

Project description:BackgroundMany older adults with multiple chronic conditions, particularly those who are functionally impaired, spend considerable time juggling the competing demands of managing their conditions often assisted by caregivers. We examined methods of assessing the treatment burden experienced by this population as a first step to identifying strategies to reduce it.MethodsSystematic searches were performed of the peer-reviewed and grey-literature (PubMed, Cochrane library, CINAHL, EMBASE, Web of Science, SCOPUS, New York Academy of Medicine Grey Literature Review, NLM catalog and ProQuest Digital Theses and Dissertations). After title and abstract screening, both qualitative and quantitative articles describing approaches to assessment of treatment burden were included.ResultsForty-five articles from the peer reviewed and three items from the grey literature were identified. Most articles (34/48) discussed treatment burden associated with a specific condition. All but one examined the treatment burden experienced by patients and six addressed the treatment burden experienced by caregivers. Qualitative studies revealed many aspects of treatment burden including the burdens of understanding the condition, juggling, monitoring and adjusting treatments, efforts to engage with others for support as well as financial and time burdens. Many tools to assess treatment burden in different populations were identified through the qualitative data. The most commonly used instrument was the Treatment Burden Questionnaire.ConclusionsMany instruments are available to assess treatment burden, but no one standardized assessment method was identified. Few articles examined approaches to measuring the treatment burden experienced by caregivers. As people live longer with more chronic conditions healthcare providers need to identify patients and caregivers burdened by treatment and engage in approaches to ameliorate treatment burden. A standard and validated assessment method to measure treatment burden in the clinical setting would help to enhance the care of people with multiple chronic conditions, allow comparison of different approaches to reducing treatment burden, and foster ongoing evaluation and monitoring of burden across conditions, patient populations, and time.

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.

Project description:ObjectivesTreatment burden is the workload of healthcare for people with long-term conditions (LTC) and its impact on well-being. A method of measurement is required to identify those experiencing high burden and to measure intervention efficacy. Our aim was to identify, examine and appraise validated patient-reported measures (PRMs) of treatment burden in stroke. Here, stroke serves as an exemplar LTC of older adults.DesignA systematic review of published studies that describe the development and validation of PRMs measuring treatment burden in stroke survivors.Data sourcesWe searched MEDLINE, Embase, CINAHL and PsycINFO electronic databases.Eligibility criteriaStudies published between January 2000 and 12 April 2019 inclusive, in English language. No restrictions were set based on clinical setting or geographical location.Data extraction and synthesisScreening, data extraction and quality appraisal were conducted by two independent reviewers. Content of the PRMs was compared with a published taxonomy of treatment burden. Quality appraisal was conducted using International Society for Quality of Life Research standards.ResultsFrom 3993 articles, 6 relevant PRMs were identified: 3 were stroke specific: The Satisfaction with Stroke Care questionnaire; The Stroke Patient-Reported Outcome Measure and The Barriers to Physical Activity after Stroke scale. Three were generic but validated in stroke: The WHO Quality of Life-100; The Patient's Questionnaire on Participation in Discharge Planning and The Chao Perception of Continuity scale. None comprehensively measured treatment burden. Examples of omitted burdens included developing coping strategies, managing finances and returning to driving. The most notable issue regarding quality appraisal was that three PRMs lacked any underpinning qualitative research relevant to the sample.ConclusionThere is a need to develop a comprehensive PRM of treatment burden for use in stroke, with potential for use in other older populations.

Project description: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.

Project description:BackgroundTuberculosis (TB) is a major contributor to the global burden of disease and has received considerable attention in recent years, particularly in low- and middle-income countries where it is closely associated with HIV/AIDS. Poor adherence to treatment is common despite various interventions aimed at improving treatment completion. Lack of a comprehensive and holistic understanding of barriers to and facilitators of, treatment adherence is currently a major obstacle to finding effective solutions. The aim of this systematic review of qualitative studies was to understand the factors considered important by patients, caregivers and health care providers in contributing to TB medication adherence.Methods and findingsWe searched 19 electronic databases (1966-February 2005) for qualitative studies on patients', caregivers', or health care providers' perceptions of adherence to preventive or curative TB treatment with the free text terms "Tuberculosis AND (adherence OR compliance OR concordance)". We supplemented our search with citation searches and by consulting experts. For included studies, study quality was assessed using a predetermined checklist and data were extracted independently onto a standard form. We then followed Noblit and Hare's method of meta-ethnography to synthesize the findings, using both reciprocal translation and line-of-argument synthesis. We screened 7,814 citations and selected 44 articles that met the prespecified inclusion criteria. The synthesis offers an overview of qualitative evidence derived from these multiple international studies. We identified eight major themes across the studies: organisation of treatment and care; interpretations of illness and wellness; the financial burden of treatment; knowledge, attitudes, and beliefs about treatment; law and immigration; personal characteristics and adherence behaviour; side effects; and family, community, and household support. Our interpretation of the themes across all studies produced a line-of-argument synthesis describing how four major factors interact to affect adherence to TB treatment: structural factors, including poverty and gender discrimination; the social context; health service factors; and personal factors. The findings of this study are limited by the quality and foci of the included studies.ConclusionsAdherence to the long course of TB treatment is a complex, dynamic phenomenon with a wide range of factors impacting on treatment-taking behaviour. Patients' adherence to their medication regimens was influenced by the interaction of a number of these factors. The findings of our review could help inform the development of patient-centred interventions and of interventions to address structural barriers to treatment adherence.

Project description:BackgroundAsthma is a major worldwide public health problem affecting an estimated 334 million people with over 300,000 deaths annually. Twenty-two million disability-adjusted life years (DALYs) are lost annually due to asthma. The condition may present many challenges if not managed well and effectively. This systematic review will provide a comprehensive synthesis of qualitative literature regarding the challenges experienced in the management of asthma and strategies adopted to counter these challenges. The review will answer the following questions: (i) what challenges have been experienced in the treatment of asthma in Sub-Saharan Africa (SSA)? and (ii) what strategies have been used to overcome asthma treatment challenges in SSA?MethodsThe reviewers will search for the following databases for relevant qualitative studies: PubMed/MEDLINE, Scopus/Embase (Elsevier), EbscoHost, Cumulative Index to Nursing and Allied Health Literature (CINAHL) and Google Scholar, using the Medical Subject Headings (MeSH) and controlled vocabulary. These articles must have been published in the English language between January 2008 and December 2018. The identified papers will then be assessed for meeting eligibility criteria. Two independent reviewers will screen titles and abstracts of articles and then review the full texts of the selected research articles. Standard data extraction forms will be utilised, and the quality of the included studies will be assessed using the Joanna Briggs checklist for qualitative research appraisal tool. Results from eligible articles will be qualitatively synthesised using the framework synthesis approach and reported according to the Enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) statement.DiscussionThis systematic review will provide an overview of reported challenges in the treatment of asthma in Sub-Saharan Africa from 2008 to 2018. The review is expected to provide information that will help form the basis for future research, policy development and practice in treatment of asthma.Systematic review registrationPROSPERO CRD42018095802.

Project description:BackgroundPeople with multimorbidity are increasingly engaged, enabled, and empowered to take responsibility for managing their health status. The purpose of the study was to systematically review and appraise the psychometric properties of tools measuring patient engagement in adults with multimorbidity and their applicability for use within engagement programs.MethodsPubMed, Scopus, Web of Science, and PsycInfo were searched from inception to 1 July 2021. Gray literature was searched using EBSCO host-database "Open dissertation". The reference lists of studies meeting the inclusion criteria were searched to identify additional eligible studies. The screening of the search results and the data extraction were performed independently by two reviewers. The methodological quality of the included studies was evaluated with the COSMIN checklist. Relevant data from all included articles were extracted and summarized in evidence synthesis tables.ResultsTwenty articles on eight tools were included. We included tools that measure all four dimensions of patient engagement (i.e., engagement, empowerment, activation, and participation). Their psychometric properties were analyzed separately. Most tools were developed in the last 10 years in Europe or the USA. The comparison of the estimated psychometric properties of the retrieved tools highlighted a significant lack of reliable patient engagement measures for people with multimorbidity. Available measures capture a diversity of constructs and have very limited evidence of psychometric properties that are vital for patient-reported measures, such as invariance, reliability, and responsiveness.ConclusionThis review clarifies how patient engagement, as operationalized in measures purporting to capture this concept, overlaps with, and differs from other related constructs in adults with multimorbidity. The methodological quality of psychometric tools measuring patient engagement in adults with multimorbidity could be improved.Systematic review registrationhttps://www.crd.york.ac.uk/prospero/display_record.php?RecordID=259968, identifier CRD42021259968.

Project description:ObjectiveExplore the interaction between patient experienced symptoms and burden of treatment (BoT) theory in chronic heart failure (CHF). BoT explains how dynamic patient workload (self-care) and their capacity (elements influencing capability), impacts on patients' experience of illness.DesignReview of qualitative research studies.Data sourcesCINAHL, EMBASE, MEDLINE, PsycINFO, Scopus and Web of Science were searched between January 2007 and 2020.Eligibility criteriaJournal articles in English, reporting qualitative studies on lived experience of CHF.Results35 articles identified related to the lived experience of 720 patients with CHF. Symptoms with physical and emotional characteristics were identified with breathlessness, weakness, despair and anxiety most prevalent. Identifying symptoms' interaction with BoT framework identified three themes: (1) Symptoms appear to infrequently drive patients to engage in self-care (9.2% of codes), (2) symptoms appear to impede (70.5% of codes) and (3) symptoms form barriers to self-care engagement (20.3% of codes). Symptoms increase illness workload, making completing tasks more difficult; simultaneously, symptoms alter a patient's capacity, through a reduction in their individual capabilities and willingness to access external resources (ie, hospitals) often with devasting impact on patients' lives.ConclusionsSymptoms appear to be integral in the patient experience of CHF and BoT, predominately acting to impede patients' efforts to engage in self-care. Symptoms alter illness workload, increasing complexity and hardship. Patients' capacity is reduced by symptoms, in what they can do and their willingness to ask for help. Symptoms can lower their perceived self-value and roles within society. Symptoms appear to erode a patient's agency, decreasing self-value and generalised physical deconditioning leading to affective paralysis towards self-care regimens. Together describing a state of overwhelming BoT which is thought to be a contributor to poor engagement in self-care and may provide new insights into the perceived poor adherence to self-care in the CHF population.Prospero registration numberCRD42017077487.

Dataset Information

Patient-experienced burden of treatment in patients with multimorbidity - A systematic review of qualitative data.

Objective

Methods

Results

Conclusions

Publications

Patient-experienced burden of treatment in patients with multimorbidity - A systematic review of qualitative data.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets