Burden of treatment in the light of the international classification of functioning, disability and health: a “best fit” framework synthesis

Abstract

Purpose: This systematic literature review aimed to (1) summarize and explain the concept of Burden of Treatment (BoT) using the International Classification of Functioning, Disability and Health (ICF) terminology, and (2) inform the development of a future Comprehensive ICF Core Set for BoT.

Method: Searches on EMbase, Medline, CINAHL and PsycINFO were conducted. Only qualitative studies were considered for inclusion. The screening and data extraction stages were followed by a “Best-fit” framework synthesis and content analysis, using the established ICF linking rules. Screening, data extraction, quality appraisal and data analysis were performed by two independent researchers.

Results: Seventeen studies were included in this review. The “Best–fit” framework synthesis generated 179 subthemes which identified that BoT impacts negatively on body functions and structures, restricts valued activities and participation and influences contextual factors through life roles, self-identify and relationships. The identified subthemes were linked to 77 ICF categories.

Conclusions: This study is part of the preparatory phase of a Comprehensive ICF Core Set for BoT and our findings will inform the further needed studies on this phase. The use of ICF terminology to describe BoT provides an accessible route for understanding this complex concept, which is pivotal for rethinking clinical practice.

Implications for rehabilitation

• Health professionals applying the ICF should consider the negative impact of interventions on patient’s life roles and self-identity, body functions and structures and on valued activities and participation.

• Health professionals who may be concerned about the treatment burden being experienced by their patients can now use the ICF terminology to discuss this with the multidisciplinary team.

• Poor adherence to rehabilitation programs may be explained by an increased BoT. This phenomenon can now be mapped to the ICF, and coded using a framework well known by multidisciplinary teams.

Keywords:

• Burden of treatment
• comprehensive ICF core sets
• ICF
• long-term conditions
• review

Disclosure statement

The authors report no declarations of interest.

Funding information

SD was funded by a Post-Doctoral Research Fellowship from the National institute of Health Research (PDF-2011-04-016). KH and SD were funded by National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care Wessex. This report is independent research arising from these awards. The views expressed in this publication are those of the authors and necessarily those of The National Institute for Health Research or the Department of Health. Contributions to this paper by ACG were supported by a European Union Life Long learning programme entitled ”Leonardo da Vinci“. AM and CJ did not have specific funding for this study. The bodies involved as funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.