BACKGROUND
Core outcome sets (COS) for multimorbidity intervention studies have been developed. These are an important stride towards addressing one of the most important challenges in health measurement – the comparability of data across studies and countries. However, an important remaining research gap that should be addressed by further research concerns the development of rehabilitation-specific multimorbidity core sets based on the World Health Organization (WHO)’s International Classification of Functioning, Disability and Health (ICF) categories for describing functioning and disability. The WHO argues that the concept of functioning (body functions and structures, activities, and participation) best captures our intuitive notion of health. Optimal functioning is, therefore, a major public-health goal.
Noteworthy, the existing COS for multimorbidity also include broad concepts of (health-related) quality of life ((HR)(QoL)). While important to include, there is considerable heterogeneity in the way (HR)QoL is defined and operationalised, which limits our ability to make meaningful comparisons between studies regarding interpretation of (HR)QoL scores, and complicates literature searches. An attempt by these COS developers to more precisely define “(HR)QoL” has partly been hindered by the large range of ways that (HR)QoL is conceptualised in the domains and the items included in the various instruments they identified (e.g., HRQoL Short-Form-36 or EuroQol/EQ-5D questionnaire).
Rehabilitation professionals (including those among our author group who are currently developing and evaluating an exercise-based rehabilitation intervention for people with multimorbidity) would find it difficult to operationalise many of the broad concepts included in the existing COS for multimorbidity, particularly (HR)QoL. These professionals must often set SMART (specific, measurable, attainable, realistic and time-bound) rehabilitation goals together with their patients and/or their caregivers based on the ICF. In addition, we do not know how adequate and relevant the current COS are to functioning, which is a key indicator for rehabilitation’s performance and impact on a person’s health state and lived experience of health.
WAY FORWARD
The WHO’s ICF is a universally accepted health information reference system or language for assessing and reporting functioning and disability in the rehabilitation community. Functioning, as described by the ICF, includes the physiological and psychological functions of body systems, as well as the tasks and actions of individuals and their involvement in all life situations. To make the ICF more applicable for everyday use, WHO and the ICF Research Branch (https://www.icf-research-branch.org/) created a process for developing core sets of ICF categories or "ICF Core Sets". An ICF Core Set (ICF-CS) is a selection of essential categories from the full ICF classification that are considered most relevant for describing the functioning of a person with a specific health condition or in a specific healthcare context. It includes categories from the ICF components of Body functions, Body structures, Activities and Participation, and Environmental factors. ICF-CS can serve a minimal standard for the assessment and reporting of functioning and health in clinical practice and studies.
Several ICF-CS have been developed to facilitate the rehabilitation process. However, these ICF-CS are focused on the impact on functioning of one specific condition, yet most people with a chronic condition have multimorbidity. A patient may present with simultaneous asthma and diabetes in the presence of HIV infection with secondary cardiomyopathy as a side effect of antiretroviral therapy. Such patient presentation challenges the current single-condition-aimed ICF-CS, because such a patient likely has additional problems to the problems caused by a single condition, that might also affect functioning. Consequently, the single-condition-aimed ICF-CS may miss relevant problems in functioning in people with multimorbidity.
Using a three-phase, multi-method scientific process for developing ICF-CS, created by the WHO and the ICF Research Branch, this project aims to develop ICF-CS for multimorbidity rehabilitation.
Fanuel M. Bickton (1,2)*, James Manifield (3,4), Felix Limbani (1), Justin Dixon (5,6), Anne E. Holland (7,8,9), Rod S. Taylor (10,11), Zahira Ahmed (3,4), Sally J. Singh (3,4)#
1. Lung Health Research Group, Malawi-Liverpool-Wellcome Programme, Blantyre, Malawi
2. Department of Rehabilitation Sciences, School of Life Sciences and Allied Health Professions, Kamuzu University of Health Sciences, Blantyre, Malawi
3. Centre for Exercise and Rehabilitation Science, Leicester Biomedical Research Centre (BRC)– Respiratory, University Hospitals of Leicester NHS Trust, National Institute for Health and Care Research (NIHR), Leicester, United Kingdom
4. Department of Respiratory Sciences, University of Leicester, Leicester, United Kingdom
5. The Health Research Unit Zimbabwe, Biomedical Research and Training Institute, Harare, Zimbabwe
6. Department of Global Health and Development, London School of Hygiene and Tropical Medicine, London, United Kingdom
7. Department of Respiratory and Sleep Medicine, Alfred Health, Melbourne, Victoria, Australia
8. School of Translational Medicine, Monash University, Melbourne, Victoria, Australia
9. Institute for Breathing and Sleep, Heidelberg, Victoria, Australia
10. MRC/CSO Social & Public Health Sciences Unit, Institute of Health and Wellbeing, University of Glasgow, Glasgow, United Kingdom
11. Robertson Centre for Biostatistics, Institute of Health and Wellbeing, University of Glasgow, Glasgow, United Kingdom
*Principal Investigator
#Supervisor
Disease Category: Rehabilitation
Disease Name: Multimorbidity
Age Range: 18 - 120
Sex: Either
Nature of Intervention: Exercise
- Clinical experts
- Conference participants
- Consumers (caregivers)
- Consumers (patients)
- Epidemiologists
- Families
- Methodologists
- Patient/ support group representatives
- Policy makers
- Researchers
- Service providers
- Service users
- Statisticians
- ICF core set
- Consensus conference
- Consensus meeting
- Delphi process
- Focus group(s)
- Interview
- Literature review
- Nominal group technique (NGT)
- Semi structured discussion
- Survey
- Systematic review
Use of the WHO's ICF and a three-phase, multi-method scientific process for developing ICF-CS, created by the WHO and the ICF Research Branch.