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

Introduction: Self-management (SM) interventions are complex interventions and one of the main components of high-quality chronic disease care for which the incorporation of the perspectives of patients and their informal caregivers is crucial. We aim to identify, appraise and synthesise the evidence exploring patients' and caregivers' perspectives on SM interventions. More precisely, we aim to 1) describe how they value the importance of outcomes of SM interventions, and 2) identify the factors that might impact on acceptability and feasibility of SM interventions based on their preferences and experiences. Methods and analysis: We will conduct four mixed-methods overviews as part of COMPAR-EU, a European Union (EU) funded project aimed to identify the most effective and cost-effective SM interventions for chronic obstructive pulmonary disease (COPD), heart failure (HF), obesity, and type 2 diabetes mellitus (T2DM). We will search in MEDLINE, CINAHL, and PsycINFO for systematic reviews of studies addressing patients' preferences on outcomes, or their experiences with SM alongside their disease trajectory or with SM interventions, published in English. Selection of studies and data extraction will be conducted in pairs. We will assess the overlap of studies and methodological quality. We will follow a three-step synthesis process: 1) narrative synthesis for quantitative evidence, 2) thematic synthesis for qualitative evidence, and 3) integration of findings in the interpretation phase. Additionally, we will consult on the relevance of findings with patients and their caregivers. Systematic review registration: PROSPERO CRD42019117867.

[1]  P. Alonso-Coello,et al.  The perspectives of patients and their caregivers on self-management interventions for chronic conditions: a protocol for a mixed-methods overview , 2021, F1000Research.

[2]  H. Schünemann,et al.  Colorectal cancer guidelines seldom include the patient perspective. , 2019, Journal of clinical epidemiology.

[3]  J. McKenzie,et al.  Toward a comprehensive evidence map of overview of systematic review methods: paper 2—risk of bias assessment; synthesis, presentation and summary of the findings; and assessment of the certainty of the evidence , 2018, Systematic Reviews.

[4]  R. Visvanathan,et al.  Effectiveness of exercise interventions on physical function in community-dwelling frail older people: an umbrella review of systematic reviews , 2018, JBI database of systematic reviews and implementation reports.

[5]  A. Pollock,et al.  An introduction to overviews of reviews: planning a relevant research question and objective for an overview , 2018, Systematic Reviews.

[6]  Benjamin Matthew Craig,et al.  Comparing and transforming PROMIS utility values to the EQ-5D , 2018, Quality of Life Research.

[7]  Gordon H. Guyatt,et al.  GRADE Guidelines: 19. Assessing the certainty of evidence in the importance of outcomes or values and preferences-Risk of bias and indirectness. , 2018, Journal of clinical epidemiology.

[8]  Kate Flemming,et al.  Cochrane Qualitative and Implementation Methods Group guidance series-paper 2: methods for question formulation, searching, and protocol development for qualitative evidence synthesis. , 2017, Journal of clinical epidemiology.

[9]  A. Booth,et al.  Cochrane Qualitative and Implementation Methods Group guidance series-paper 1: introduction. , 2017, Journal of clinical epidemiology.

[10]  J. McKenzie,et al.  Toward a comprehensive evidence map of overview of systematic review methods: paper 1—purpose, eligibility, search and data extraction , 2017, Systematic Reviews.

[11]  Victoria Wade,et al.  Mixed methods for telehealth research , 2017, Journal of telemedicine and telecare.

[12]  P. Alonso-Coello,et al.  Marcos GRADE de la evidencia a la decisión (EtD): un enfoque sistemático y transparente para tomar decisiones sanitarias bien informadas. 2: Guías de práctica clínica , 2017 .

[13]  Anna Selva,et al.  Development and use of a content search strategy for retrieving studies on patients' views and preferences , 2017, Health and Quality of Life Outcomes.

[14]  K. Seers,et al.  A mega-ethnography of eleven qualitative evidence syntheses exploring the experience of living with chronic non-malignant pain , 2017, BMC Medical Research Methodology.

[15]  H. Schünemann,et al.  Incorporating patients' views in guideline development: a systematic review of guidance documents. , 2017, Journal of clinical epidemiology.

[16]  E. Akl,et al.  Using patient values and preferences to inform the importance of health outcomes in practice guideline development following the GRADE approach , 2017, Health and Quality of Life Outcomes.

[17]  P. Pluye,et al.  Convergent and sequential synthesis designs: implications for conducting and reporting systematic reviews of qualitative and quantitative evidence , 2017, Systematic Reviews.

[18]  Stephanie J. C. Taylor,et al.  Clinical-effectiveness of self-management interventions in chronic obstructive pulmonary disease: An overview of reviews , 2017, Chronic respiratory disease.

[19]  C. Pope,et al.  Experiences of long-term life-limiting conditions among patients and carers: what can we learn from a meta-review of systematic reviews of qualitative studies of chronic heart failure, chronic obstructive pulmonary disease and chronic kidney disease? , 2016, BMJ Open.

[20]  Anindita Saha,et al.  A Framework for Incorporating Patient Preferences Regarding Benefits and Risks into Regulatory Assessment of Medical Technologies. , 2016, Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research.

[21]  H. Boeije,et al.  Self‐management support from the perspective of patients with a chronic condition: a thematic synthesis of qualitative studies , 2016, Health expectations : an international journal of public participation in health care and health policy.

[22]  J. McKenzie,et al.  Evidence map of studies evaluating methods for conducting, interpreting and reporting overviews of systematic reviews of interventions: rationale and design , 2016, Systematic Reviews.

[23]  Stephanie J. C. Taylor,et al.  Experiences of Self-Management Support Following a Stroke: A Meta-Review of Qualitative Systematic Reviews , 2015, PloS one.

[24]  Hanan Khalil,et al.  Summarizing systematic reviews: methodological development, conduct and reporting of an umbrella review approach , 2015, International journal of evidence-based healthcare.

[25]  P. Shekelle,et al.  Preferred reporting items for systematic review and meta-analysis protocols (PRISMA-P) 2015 statement , 2015, Systematic Reviews.

[26]  Stephanie Taylor,et al.  A rapid synthesis of the evidence on interventions supporting self-management for people with long-term conditions (PRISMS Practical systematic Review of Self-Management Support for long-term conditions) , 2014 .

[27]  Dawid Pieper,et al.  Up-to-dateness of reviews is often neglected in overviews: a systematic review. , 2014, Journal of clinical epidemiology.

[28]  D. Pieper,et al.  Systematic review finds overlapping reviews were not mentioned in every other overview. , 2014, Journal of clinical epidemiology.

[29]  Pierre Pluye,et al.  Combining the power of stories and the power of numbers: mixed methods research and mixed studies reviews. , 2014, Annual review of public health.

[30]  Romina Brignardello-Petersen,et al.  Guidelines 2.0: systematic development of a comprehensive checklist for a successful guideline enterprise , 2014, Canadian Medical Association Journal.

[31]  Elie A Akl,et al.  GRADE guidelines: 14. Going from evidence to recommendations: the significance and presentation of recommendations. , 2013, Journal of clinical epidemiology.

[32]  Harris Cooper,et al.  The overview of reviews: unique challenges and opportunities when research syntheses are the principal elements of new integrative scholarship. , 2012, The American psychologist.

[33]  Angela Harden,et al.  Synthesis: combining results systematically and appropriately , 2012 .

[34]  C. Pope,et al.  Evaluating meta-ethnography: systematic analysis and synthesis of qualitative research. , 2011, Health technology assessment.

[35]  N. Mutrie,et al.  The clinical effectiveness and cost-effectiveness of exercise referral schemes: a systematic review and economic evaluation. , 2011, Health technology assessment.

[36]  Michele Tarsilla Cochrane Handbook for Systematic Reviews of Interventions , 2010, Journal of MultiDisciplinary Evaluation.

[37]  James Thomas,et al.  Bmc Medical Research Methodology Methods for the Synthesis of Qualitative Research: a Critical Review , 2022 .

[38]  Jennie Popay,et al.  Testing Methodological Guidance on the Conduct of Narrative Synthesis in Systematic Reviews , 2009 .

[39]  M. Petticrew,et al.  Developing and evaluating complex interventions: the new Medical Research Council guidance , 2008, BMJ : British Medical Journal.

[40]  A. Oxman,et al.  Overviews of Reviews , 2008 .

[41]  Barbara A. Given,et al.  Supporting Family Caregivers in Providing Care , 2008 .

[42]  T. Greenhalgh,et al.  Effectiveness and efficiency of search methods in systematic reviews of complex evidence: audit of primary sources , 2005, BMJ : British Medical Journal.

[43]  Chris Hyde,et al.  Decision Making in Health and Medicine. Integrating Evidence and Values , 2005, ACP Journal Club.

[44]  E H Wagner,et al.  Improving the quality of health care for chronic conditions , 2004, Quality and Safety in Health Care.

[45]  T. Bodenheimer,et al.  Patient self-management of chronic disease in primary care. , 2002, JAMA.

[46]  C. Wright,et al.  Self-management approaches for people with chronic conditions: a review. , 2002, Patient education and counseling.

[47]  R. Tattersall The expert patient: a new approach to chronic disease management for the twenty-first century. , 2002, Clinical medicine.

[48]  M. Weinstein,et al.  Decision Making in Health and Medicine , 2001 .

[49]  P J Neumann,et al.  Systematic overview of cost-utility assessments in oncology. , 2000, Journal of clinical oncology : official journal of the American Society of Clinical Oncology.

[50]  Patricia Flatley Brennan,et al.  Review: Improving Health Care by Understanding Patient Preferences: The Role of Computer Technology , 1998, J. Am. Medical Informatics Assoc..

[51]  G. Guyatt,et al.  [GRADE Evidence to Decision (EtD) frameworks: a systematic and transparent approach to making well informed healthcare choices. 2: Clinical practice guidelines]. , 2018, Gaceta sanitaria.

[52]  M. Tirani,et al.  [Guidelines 2.0: systematic development of a comprehensive checklist for a successful guideline enterprise]. , 2015, Recenti progressi in medicina.

[53]  Patricia A Grady,et al.  Self-management: a comprehensive approach to management of chronic conditions. , 2014, American journal of public health.

[54]  G W Torrance,et al.  Utility approach to measuring health-related quality of life. , 1987, Journal of chronic diseases.