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

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Anttila , H , Tallqvist , S , Munoz , M , Leppäjoki-Tiistola , S , Mäkitie , O & Hiekkala , S 2021 , ' Towards an ICF-based self-report questionnaire for people with skeletal dysplasia to study health, functioning, disability and accessibility ' , Orphanet journal of rare diseases , vol. 16 , no. 1 , 236 . https://doi.org/10.1186/s13023-021-01857-7

Title: Towards an ICF-based self-report questionnaire for people with skeletal dysplasia to study health, functioning, disability and accessibility
Author: Anttila, Heidi; Tallqvist, Susanna; Munoz, Minna; Leppäjoki-Tiistola, Sanna; Mäkitie, Outi; Hiekkala, Sinikka
Contributor organization: HUS Children and Adolescents
Clinicum
Lastentautien yksikkö
Children's Hospital
Date: 2021-05-22
Language: eng
Number of pages: 11
Belongs to series: Orphanet journal of rare diseases
ISSN: 1750-1172
DOI: https://doi.org/10.1186/s13023-021-01857-7
URI: http://hdl.handle.net/10138/332436
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 formulated using ICF linking rules. Expert panels from the target population assessed the face and content validity in thematic interviews. Results The questionnaire demonstrated its relevance, comprehensiveness and feasibility for people with skeletal dysplasia. The ICF linkages showed the contents' correspondence to the construct. Expert panels added 15 categories and one on chapter level to the core set and confirmed content validity. The final survey covers 86 ICF categories and 173 ICF-linked items that were grouped to 33 questions. Conclusions The content of the questionnaire proved to be sufficiently valid for people with skeletal dysplasia. It can be used to explore their health, functioning, disability and accessibility to develop care and rehabilitation policies, to plan services and to provide information to various parties involved.
Subject: 3121 General medicine, internal medicine and other clinical medicine
Functioning
Disability
Environmental factors
Self-report
Questionnaire design
Content validity
Skeletal dysplasia
Short stature
Rare disease
QUALITY-OF-LIFE
MINIMAL GENERIC SET
INTERNATIONAL-CLASSIFICATION
ENVIRONMENTAL-FACTORS
PHYSICAL FUNCTION
REHABILITATION
CHILDREN
DOMAINS
IMPACT
Peer reviewed: Yes
Rights: cc_by
Usage restriction: openAccess
Self-archived version: publishedVersion


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