Dataset Information

The experience of financial burden for people with multimorbidity: A systematic review of qualitative research.

ABSTRACT:

Background

Multimorbidity prevalence is increasing globally. People with multimorbidity have higher health care costs, which can create a financial burden.

Objective

To synthesize qualitative research exploring experience of financial burden for people with multimorbidity.

Search strategy

Six databases were searched in May 2019. A grey literature search and backward and forward citation checking were also conducted.

Inclusion criteria

Studies were included if they used a qualitative design, conducted primary data collection, included references to financial burden and had at least one community-dwelling adult participant with two or more chronic conditions.

Data extraction and synthesis

Screening and critical appraisal were conducted by two reviewers independently. One reviewer extracted data from the results section; this was checked by a second reviewer. GRADE-CERQual was used to summarize the certainty of the evidence. Data were analysed using thematic synthesis.

Main results

Forty-six studies from six continents were included. Four themes were generated: the high costs people with multimorbidity experience, the coping strategies they use to manage these costs, and the negative effect of both these on their well-being. Health insurance and government supports determine the manageability and level of costs experienced.

Discussion

Financial burden has a negative effect on people with multimorbidity. Continuity of care and an awareness of the impact of financial burden of multimorbidity amongst policymakers and health care providers may partially address the issue.

Patient or public contribution

Results were presented to a panel of people with multimorbidity to check whether the language and themes 'resonated' with their experiences.

SUBMITTER: Larkin J

PROVIDER: S-EPMC8077119 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

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:ObjectiveTo synthesize existing qualitative literature on patient-experienced burden of treatment in multimorbid patients.MethodsA 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.ResultsNine 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.ConclusionsHealthcare 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.

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:BackgroundGeneral practitioners (GPs) increasingly manage patients with multimorbidity but report challenges in doing so. Patients describe poor experiences with health care systems that treat each of their health conditions separately, resulting in fragmented, uncoordinated care. For GPs to provide the patient-centred, coordinated care patients need and want, research agendas and health system structures and policies will need to adapt to address this epidemiologic transition. This systematic review seeks to understand if and how multimorbidity impacts on the work of GPs, the strategies they employ to manage challenges, and what they believe still needs addressing to ensure quality patient care.MethodsSystematic review and thematic synthesis of qualitative studies reporting GP experiences of managing patients with multimorbidity. The search included nine major databases, grey literature sources, Google and Google Scholar, a hand search of Journal of Comorbidity, and the reference lists of included studies.ResultsThirty-three studies from fourteen countries were included. Three major challenges were identified: practising without supportive evidence; working within a fragmented health care system whose policies and structures remain organised around single condition care and specialisation; and the clinical uncertainty associated with multimorbidity complexity and general practitioner perceptions of decisional risk. GPs revealed three approaches to mitigating these challenges: prioritising patient-centredness and relational continuity; relying on knowledge of patient preferences and unique circumstances to individualise care; and structuring the consultation to create a sense of time and minimise patient risk.ConclusionsGPs described an ongoing tension between applying single condition guidelines to patients with multimorbidity as security against uncertainty or penalty, and potentially causing patients harm. Above all, they chose to prioritise their long-term relationships for the numerous gains this brought such as mutual trust, deeper insight into a patient's unique circumstances, and useable knowledge of each individual's capacity for the work of illness and goals for life. GPs described a need for better multimorbidity management guidance. Perhaps more than this, they require policies and models of practice that provide remunerated time and space for nurturing trustful therapeutic partnerships.

Project description:ContextPatient engagement in research consists in involving patients as partners across the research cycle. This practice has quickly become an international standard, with funding bodies actively encouraging it. As the increased incentive to engage patients can lead to tokenistic partnerships, it is important to consider the experiences of patient-partners.ObjectiveTo synthesize the qualitative literature on the experience of patients as partners in research.DesignA systematic review of the literature with thematic synthesis was realized, guided by the framework developed by Thomas and Harden (Bmc Med Res Methodol 8: 45, 2008).Data collectionA search strategy was developed to encompass keywords relating to patient-partners in research, their experience, and the qualitative nature of the target studies. 10 databases were searched using the EBSCO-host engine, along with the Scopus engine to include EMBASE. The search results were screened for the following inclusion criteria: articles written in English; articles reporting on the experience of patient-partners in research; qualitative studies or mixed-methods studies with a distinct qualitative section.AnalysisIncluded articles were charted for general information. The CASP qualitative checklist was used for critical appraisal. The "results" section of each article was coded line by line. Codes were aggregated inductively to form descriptive themes and analytical themes, in order to synthesize the ideas found in the selection of articles.ResultsThe initial search yielded 10,222 results. After the removal of duplicates, 5534 titles and abstracts were screened, 88 full-text reports were evaluated, and 41 studies were included. Articles reporting on these studies were published between 2005 and 2020. Seven themes emerged from the analysis: "motivations to engage in research", "activities in patient engagement", "structure", "competence", "team dynamics", "impacts on broader life", and "illness". Articles reported varying degrees of perceived impact on research and satisfaction concerning the level of engagement. The importance of power differentials and team dynamics were widely stated.ConclusionsFindings provide an in-depth view of the experiences of patient-partners in research. Most articles reported a generally positive experience, but challenges and pitfalls of patient engagement were identified. This will serve research teams by highlighting good practices and possible improvements.

Project description:Advances in scientific understanding have led to novel therapies and improved supportive care for many patients with haematological malignancies. However, these new drugs are often costly, only available at centralised health care facilities, require regular specialist reviews and lengthy treatment regimens. This leads to a significant financial burden. Understanding the impact of financial burden on haematological patients is important to appreciate the urgency of alleviating this systemic issue.MethodEligible studies were identified by systematically searching Medline, PsycINFO, CINAHL and Embase. Self-reported data reported in both quantitative and qualitative studies that described the financial burden for patients with haematological malignancies were included. Quality appraisal of the included studies was undertaken using the Joanna Briggs Institute tools. A narrative synthesis was employed. For quantitative studies, outcomes were extracted, tabulated and categorised to find similarities and differences between the studies. For qualitative studies, quotations, codes and themes were extracted and then clustered. An inductive approach derived qualitative themes.ResultsTwenty studies were identified for inclusion. Of the quantitative studies most (83%) employed un-validated researcher-generated measures to assess financial burden. Between 15-59% of patients experienced a financial burden. Out-of-pocket expenditure was frequent for clinical appointments, prescription and non-prescription medication, and travel. Financial burden was associated with a worsening quality of life and living in metropolitan areas, but there was no evidence for impact on survival. Patient-centred experiences from the qualitative inquiry complemented the quantitative findings and five themes were determined: familial or household impact; reliance on others; barriers to care due to cost; and barriers to accessing financial assistance and sources of out-of-pocket expenses.ConclusionThe impacts of financial burden are yet to be fully appreciated in haematological malignancies, exacerbated by the heterogeneous methods employed by researchers. Future work should focus on identifying the long-term ramifications of financial burden for patients and should trial interventions to reduce its prevalence and patient impacts.

Project description:BackgroundMost consultations in primary care involve patients suffering from multimorbidity. Nevertheless, few studies exist on the clinical reasoning processes of general practitioners (GPs) during the follow-up of these patients. The aim of this systematic review is to summarise published evidence on how GPs reason and make decisions when managing patients with multimorbidity in the long term.MethodsA search of the relevant literature from Medline, Embase, PsycINFO, and ERIC databases was conducted in June 2019. The search terms were selected from five domains: primary care, clinical reasoning, chronic disease, multimorbidity, and issues of multimorbidity. Qualitative, quantitative, and mixed-methods studies published in English and French were included. Quality assessment was performed using the Mixed Methods Appraisal Tool.ResultsA total of 2 165 abstracts and 362 full-text articles were assessed. Thirty-two studies met the inclusion criteria. Results showcased that GPs' clinical reasoning during the long-term management of multimorbidity is about setting intermediate goals of care in an ongoing process that adapts to the patients' constant evolution and contributes to preserve their quality of life. In the absence of guidelines adapted to multimorbidity, there is no single correct plan, but competing priorities and unavoidable uncertainties. Thus, GPs have to consider and weigh multiple factors simultaneously. In the context of multimorbidity, GPs describe their reasoning as essentially intuitive and seem to perceive it as less accurate. These clinical reasoning processes are nevertheless more analytical as they might think and rooted in deep knowledge of the individual patient.ConclusionsAlthough the challenges GPs are facing in the long-term follow-up of patients suffering from multimorbidity are increasingly known, the literature currently offers limited information about GPs' clinical reasoning processes at play. GPs tend to underestimate the complexity and richness of their clinical reasoning, which may negatively impact their practice and their teaching.

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.