Fundamental questions before recording or measuring functioning and disability

Abstract

Purpose: This paper seeks to contribute to thoughtful description, recording and measurement of functioning, by discussing some fundamental questions to consider before starting, framed as: why, what, how and who.

Method: Generic literature on measurement methods and the more specialised literature on application of the ICF over the last decade inform the consideration of these questions. The context of recording or measurement is examined, including the moral and legal framework of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and the technical framework of the International Classification of Functioning, Disability and Health (ICF).

Results: Whatever the setting in which describing, recording or measuring is being undertaken – in policy development, service planning and management, clinical management or population health monitoring – determining the purpose is the key starting point. Purpose (why) frames the consideration of content (what), method (how) and source (who). Many generic measurement methods can be applied in the disability field, but there are challenges particular to the field. The perspectives of people with disabilities and “patients” require consideration, especially with the trend to person-centred care and the social justice principles emanating from the UNCRPD.

Conclusions: Considering these basic questions is a pre-requisite to meaningful recording and measurement of functioning and disability. Future challenges include: incorporating environmental factors into measurement; setting thresholds on the disability spectrum; and combining the views of the person concerned with those of various professionals.

Implications for Rehabilitation

• Partnership with people with disabilities in their rehabilitation is based on their co-ownership with service providers of the questions that drive the assessment process. Asking basic questions of the assessment process – such as why, what, how and who – demystifies its intent and outcomes for people receiving rehabilitation services and contributes to genuine partnership in the provision of rehabilitation services.

• Validity of measurement depends on both the evidence for and the consequences of score interpretation. The consideration of these basic questions will contribute to the validity of rehabilitation assessment.

Keywords::

• Activities
• environment
• International Classification of Functioning
• Disability and Health (ICF)
• participation
• self-report
• statistics
• thresholds
• UN Convention on the Rights of Persons with Disabilities (UNCRPD)

Acknowledgement

This paper is based on a presentation under the title “Recording functioning, why, how and who: Opening remarks” at “Think Before You Measure”Symposium. University of Sydney,June 29, 2011.

Declaration of Interest: The authors report no declarations of interest.