Towards an ICF-based self-report questionnaire for people with skeletal dysplasia to study health, functioning, disability and accessibility.

ABSTRACT:

Background

Little is known about the spectrum of everyday challenges that people with skeletal dysplasia face because of their health and functioning. We aimed to identify factors related to health, functioning and disability in people with skeletal dysplasia, and their challenges with accessibility in order to form a self-reported questionnaire for national data collection. The comprehensive musculoskeletal post-acute core set of the International Classification of Functioning, Disability and Health (ICF) was used as a framework.

Methods

An iterative, participatory and qualitative process was used to formulate a questionnaire. Items were searched from Patient-Reported Outcomes Measurement Information System and from other self-report instruments, additional items were formu

SUBMITTER: Anttila H 

PROVIDER: S-EPMC8141148 | biostudies-literature | 2021 May

REPOSITORIES: biostudies-literature