The experience of financial burden for patients with multimorbidity: A protocol for a systematic review of qualitative research.
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SUBMITTER: Larkin J
PROVIDER: S-EPMC7309055 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundMultimorbidity prevalence is increasing globally. People with multimorbidity have higher health care costs, which can create a financial burden.ObjectiveTo synthesize qualitative research exploring experience of financial burden for people with multimorbidity.Search strategySix databases were searched in May 2019. A grey literature search and backward and forward citation checking were also conducted.Inclusion criteriaStudies 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 synthesisScreening 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 resultsForty-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.DiscussionFinancial 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 contributionResults were presented to a panel of people with multimorbidity to check whether the language and themes 'resonated' with their experiences.
| S-EPMC8077119 | biostudies-literature
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.
| S-EPMC5482482 | biostudies-literature
Project description:ObjectiveTo synthesise the existing published literature on the perceptions of general practitioners (GPs) or their equivalent on the clinical management of multimorbidity and determine targets for future research that aims to improve clinical care in multimorbidity.DesignSystematic review and metaethnographic synthesis of primary studies that used qualitative methods to explore GPs' experiences of clinical management of multimorbidity or multiple chronic diseases.Data sourcesEMBASE, MEDLINE, CINAHL, PsycInfo, Academic Search Complete, SocIndex, Social Science Full Text and digital theses/online libraries (database inception to September 2012) to identify literature using qualitative methods (focus groups or interviews).Review methodsThe 7-step metaethnographic approach described by Noblit and Hare, which involves cross-interpretation between studies while preserving the context of the primary data.ResultsOf 1805 articles identified, 37 were reviewed in detail and 10 were included, using a total of 275 GPs in 7 different countries. Four areas of difficulty specific to the management of multimorbidity emerged from these papers: disorganisation and fragmentation of healthcare; the inadequacy of guidelines and evidence-based medicine; challenges in delivering patient-centred care; and barriers to shared decision-making. A 'line of argument' was drawn which described GPs' sense of isolation in decision-making for multimorbid patients.ConclusionsThis systematic review shows that the problem areas for GPs in the management of multimorbidity may be classified into four domains. There will be no 'one size fits all' intervention for multimorbidity but these domains may be useful targets to guide the development of interventions that will assist and improve the provision of care to multimorbid patients.
| S-EPMC3773648 | biostudies-literature
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.
| S-EPMC7331183 | biostudies-literature
Project description:IntroductionGood patient outcomes correlate with the physicians' capacity for good clinical judgement. Multimorbidity is common and it increases uncertainty and complexity in the clinical encounter. However, healthcare systems and medical education are centred on individual diseases. In consequence, recognition of the patient as the centre of the decision-making process becomes even more difficult. Research in clinical reasoning and medical decision in a real-world context is needed. The aim of the present review is to identify and synthesise available qualitative evidence on primary care physicians' perspectives, views or experiences on decision-making with patients with multimorbidity.Methods and analysisThis will be a systematic review of qualitative research where PubMed, CINAHL, PsycINFO, Embase and Web of Science will be searched, supplemented with manual searches of reference lists of included studies. Qualitative studies published in Portuguese, Spanish and English language will be included, with no date limit. Studies will be eligible when they evaluate family physicians' perspectives, opinions or perceptions on decision-making for patients with multimorbidity in primary care. The methodological quality of studies selected for retrieval will be assessed by two independent reviewers before inclusion in the review using the Critical Appraisal Skills Programme (CASP) tool. Thematic synthesis will be used to identify key categories and themes from the qualitative data. The Confidence in the Evidence from Reviews of Qualitative research approach will be used to assess how much confidence to place in findings from the qualitative evidence synthesis.Ethics and disseminationThis review will use published data. No ethical issues are foreseen. The findings will be disseminated to the medical community via journal publication and conference presentation(s).Prospero registration numberID 91978.
| S-EPMC6500233 | biostudies-literature
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.
| S-EPMC8459259 | biostudies-literature
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.
| S-EPMC3692487 | biostudies-other
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.
| S-EPMC9528123 | biostudies-literature
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.
| S-EPMC9221876 | biostudies-literature
Project description:Background Essential tremor (ET) is among the most common movement disorders in adults. While ET is diagnosed and primarily characterized by the presence of tremor, it also can impact cognition, sleep, mood, and motor functioning more broadly. The manifestations of ET can have various consequences, including difficulty with activities of daily living (ADL), embarrassment, and overall decline in health-related quality of life, which have not been fully explored in prior studies. Objective We performed a systematic literature review to comprehensively characterize the burden experienced by patients with ET from the clinical and humanistic perspectives, focusing on outcomes beyond tremor. Methods This systematic literature review followed Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Searches in PubMed, Embase, and Cochrane Library identified original, observational studies of the clinical and humanistic burden in adult patients with ET published in English between 2010 and 2020. Studies assessing epidemiology, treatment patterns, or disease management were excluded. Search results were screened according to pre-determined eligibility criteria. Data from included studies were collected, independently verified, and qualitatively synthesized. Results Following the screening of 2,303 records and 145 full-text articles, 39 studies were identified. There was significant heterogeneity in study designs, statistical approaches, and patient cohorts across the included studies. Patients with ET in these studies exhibited more severe disabilities and reduced independence compared to healthy individuals, and they often struggled to perform ADL and relied on caregivers for physical and emotional support. Patients also experienced various issues with movement and balance, increased risk of falls, depression, anxiety, poor sleep quality, and psychosocial consequences including embarrassment, apathy, and enfeeblement. Conclusion A systematic literature review of non-tremor manifestations and/or consequences of ET identified far-reaching negative impacts on patients' ability to function independently and revealed accompanying psychosocial effects, including social fear and embarrassment. The reduced function and psychosocial deficits observed in patients with ET result in significant clinical and humanistic burdens, decreasing quality of life. Future studies should evaluate this condition beyond the tremor itself to provide an improved understanding of the multi-dimensional burden of the disease, thereby highlighting the need to diagnose and appropriately manage patients with ET.
| S-EPMC9354397 | biostudies-literature