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

Ena Niño de Guzmán Quispe (), Laura Martínez García, Carola Orrego Villagrán, Monique Heijmans, Rosa Sunol, David Fraile-Navarro, Javier Pérez-Bracchiglione, Lyudmil Ninov, Karla Salas-Gama, Andrés Viteri García and Pablo Alonso-Coello
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Ena Niño de Guzmán Quispe: Iberoamerican Cochrane Centre (IbCC)-Sant Pau Biomedical Research Institute (IIB-Sant Pau)
Laura Martínez García: Iberoamerican Cochrane Centre (IbCC)-Sant Pau Biomedical Research Institute (IIB-Sant Pau)
Carola Orrego Villagrán: Avedis Donabedian Research Institute (FAD)
Monique Heijmans: Netherlands Institute for Health Services Research (Nivel)
Rosa Sunol: Avedis Donabedian Research Institute (FAD)
David Fraile-Navarro: Macquarie University
Javier Pérez-Bracchiglione: Universidad de Valparaíso
Lyudmil Ninov: European Patients’ Forum
Karla Salas-Gama: Health Services Research Group, Institut de Recerca Vall d’Hebron Hospital
Andrés Viteri García: Universidad UTE
Pablo Alonso-Coello: Iberoamerican Cochrane Centre (IbCC)-Sant Pau Biomedical Research Institute (IIB-Sant Pau)

The Patient: Patient-Centered Outcomes Research, 2021, vol. 14, issue 6, No 4, 719-740

Abstract: Abstract 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, decision-making processes, including the formulation of recommendations, and the design and implementation of SM interventions.

Date: 2021
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DOI: 10.1007/s40271-021-00514-2

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