The perspectives of patients and their caregivers on self-management interventions for chronic conditions: a protocol for a mixed-methods overview

Guzmán, Ena Niño de; García, Laura Martínez; González, Ana Isabel González; Heijmans, Monique; Huaringa, Jorge; Immonen, Kaisa; Ninov, Lyudmil; Orrego, Carola; Pérez-Bracchiglione, Javier; Salas-Gama, Karla; Viteri-García, Andrés; Alonso‐Coello, Pablo

doi:10.12688/f1000research.22125.1

Cited by 8 publications

(5 citation statements)

References 47 publications

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“…We conducted a scoping review of reviews [ 22 ] to identify and describe key concepts related to outcomes by exploring patients’ and caregivers’ preferences and experiences when coping with COPD and its self-management.…”

Section: Methodsmentioning

confidence: 99%

Self-management interventions for adults living with Chronic Obstructive Pulmonary Disease (COPD): The development of a Core Outcome Set for COMPAR-EU project

et al. 2021

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Background A large body of evidence suggests that self-management interventions (SMIs) may improve outcomes in chronic obstructive pulmonary disease (COPD). However, accurate comparisons of the relative effectiveness of SMIs are challenging, partly due to heterogeneity of outcomes across trials and uncertainty about the importance of these outcomes for patients. We aimed to develop a core set of patient-relevant outcomes (COS) for SMIs trials to enhance comparability of interventions and ensure person-centred care. Methods We undertook an innovative approach consisting of four interlinked stages: i) Development of an initial catalogue of outcomes from previous EU-funded projects and/or published studies, ii) Scoping review of reviews on patients and caregivers’ perspectives to identify outcomes of interest, iii) Two-round Delphi online survey with patients and patient representatives to rate the importance of outcomes, and iv) Face-to-face consensus workshop with patients, patient representatives, health professionals and researchers to develop the COS. Results From an initial list of 79 potential outcomes, 16 were included in the COS plus one supplementary outcome relevant to all participants. These were related to patient and caregiver knowledge/competence, self-efficacy, patient activation, self-monitoring, adherence, smoking cessation, COPD symptoms, physical activity, sleep quality, caregiver quality of life, activities of daily living, coping with the disease, participation and decision-making, emergency room visits/admissions and cost effectiveness. Conclusion The development of the COPD COS for the evaluation of SMIs will increase consistency in the measurement and reporting of outcomes across trials. It will also contribute to more personalized health care and more informed health decisions in clinical practice as patients’ preferences regarding COPD outcomes are more systematically included.

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Section: Methodsmentioning

confidence: 99%

Self-management interventions for adults living with Chronic Obstructive Pulmonary Disease (COPD): The development of a Core Outcome Set for COMPAR-EU project

et al. 2021

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“…We searched four electronic databases (PubMed, Embase, PsycINFO and Cinahl) using Medical Subject Headings and plain text. We used the same search blocks as in our previous study to identify publications on self-management, 19 combined with two additional search blocks for this study (see Appendix A: Tables 1–4). The search period was from 2010 to 2021.…”

Section: Methodsmentioning

confidence: 99%

Contextual factors for the successful implementation of self-management interventions for chronic diseases: A qualitative review of reviews

et al. 2023

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Objectives To identify and describe the most relevant contextual factors (CFs) from the literature that influence the successful implementation of self-management interventions (SMIs) for patients living with type 2 diabetes mellitus, obesity, COPD and/or heart failure. Methods We conducted a qualitative review of reviews. Four databases were searched, 929 reviews were identified, 460 screened and 61 reviews met the inclusion criteria. CFs in this paper are categorized according to the Tailored Implementation for Chronic Diseases framework. Results A great variety of CFs was identified on several levels, across all four chronic diseases. Most CFs were on the level of the patient, the professional and the interaction level, while less CFs were obtained on the level of the intervention, organization, setting and national level. No differences in main themes of CFs across all four diseases were found. Discussion For the successful implementation of SMIs, it is crucial to take CFs on several levels into account simultaneously. Person-centered care, by tailoring SMIs to patients’ needs and circumstances, may increase the successful uptake, application and implementation of SMIs in real-life practice. The next step will be to identify the most important CFs according to various stakeholders through a group consensus process.

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“…In this mixedmethods scoping review, we identified the most relevant themes regarding SM from the perspectives of patients, informal caregivers, and healthcare professionals regarding the process of SM and SM interventions. In a second stage within COMPAR-EU, we are conducting four overviews (one per each chronic disease) to offer a more detailed and in-depth analysis, better characterising how the different populations value the importance of the different outcomes of SM interventions and identifying factors that potentially affect the acceptability and feasibility of SM interventions [189].…”

Section: Implications For Practice and Researchmentioning

confidence: 99%

The Perspectives of Patients with Chronic Diseases and Their Caregivers on Self-Management Interventions: A Scoping Review of Reviews

Guzmán

García

Orrego

et al. 2021

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Background Self-management (SM) interventions are supportive interventions systematically provided by healthcare professionals, peers, or laypersons to increase the skills and confidence of patients in their ability to manage chronic diseases. We had two objectives: (1) to summarise the preferences and experiences of patients and their caregivers (informal caregivers and healthcare professionals) with SM in four chronic diseases and (2) to identify and describe the relevant outcomes for SM interventions from these perspectives. Methods We conducted a mixed-methods scoping review of reviews. We searched three databases until December 2020 for quantitative, qualitative, or mixed-methods reviews exploring patients' and caregivers' preferences or experiences with SM in type 2 diabetes mellitus (T2DM), obesity, chronic obstructive pulmonary disease (COPD), and heart failure (HF). Quantitative data were narratively synthesised, and qualitative data followed a three-step descriptive thematic synthesis. Identified themes were categorised into outcomes or modifiable factors of SM interventions. Results We included 148 reviews covering T2DM (n = 53 [35.8%]), obesity (n = 20 [13.5%]), COPD (n = 32 [21.6%]), HF (n = 38 [25.7%]), and those with more than one disease (n = 5 [3.4%]). We identified 12 main themes. Eight described the process of SM (disease progression, SM behaviours, social support, interaction with healthcare professionals, access to healthcare, costs for patients, culturally defined roles and perceptions, and health knowledge), and four described their experiences with SM interventions (the perceived benefit of the intervention, individualised care, sense of community with peers, and usability of equipment). Most themes and subthemes were categorised as outcomes of SM interventions. Conclusion The process of SM shaped the perspectives of patients and their caregivers on SM interventions. Their perspectives were influenced by the perceived benefit of the intervention, the sense of community with peers, the intervention's usability, and the level of individualised care. Our findings can inform the selection of patient-important outcomes, decisionmaking processes, including the formulation of recommendations, and the design and implementation of SM interventions.

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The perspectives of patients and their caregivers on self-management interventions for chronic conditions: a protocol for a mixed-methods overview

Cited by 8 publications

References 47 publications

Self-management interventions for adults living with Chronic Obstructive Pulmonary Disease (COPD): The development of a Core Outcome Set for COMPAR-EU project

Self-management interventions for adults living with Chronic Obstructive Pulmonary Disease (COPD): The development of a Core Outcome Set for COMPAR-EU project

Contextual factors for the successful implementation of self-management interventions for chronic diseases: A qualitative review of reviews

The Perspectives of Patients with Chronic Diseases and Their Caregivers on Self-Management Interventions: A Scoping Review of Reviews

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