Dataset Information

Development of an ICF Core Set for adults with cerebral palsy: capturing their perspective on functioning.

ABSTRACT:

Aim

To examine the most relevant aspects of functioning of adults with cerebral palsy (CP) from their perspective, in order to develop an International Classification of Functioning, Disability and Health (ICF) Core Set for adults with CP.

Method

We conducted six focus group discussions with adults with CP without intellectual disability and seven interviews with adults with CP with intellectual disability and caregivers, addressing all ICF components. Meaningful concepts were identified from verbatim transcripts and linked to ICF categories by two independent researchers.

Results

In total, 31 adults with CP without intellectual disability (mean [SD] age 46y 1mo [14y 1mo]; 20 females, 11 males; Gross Motor Function Classification System [GMFCS] levels I-IV) and seven adults with CP and intellectual disability (mean [SD] age 25y 8mo [6y 8mo]; four females, three males; GMFCS levels III-V) participated. We identified 132 unique second-level categories: 47 body functions, seven body structures, 43 activities and participation, and 35 environmental factors. The most frequently mentioned categories were emotional function, pain, muscle tone function, support of family, products and technology, and health services.

Interpretation

Adults with CP experienced problems in a broad range of body functions and activities and indicated the importance of environmental factors for functioning. The identified categories will be added to the list of candidate items to reach consensus on an ICF Core Set for adults with CP. What this paper adds Including the lived experience is crucial for fully understanding functioning of adults with cerebral palsy (CP). Adults with CP perceive environmental factors as essential elements for everyday functioning. Adults with intellectual disability should be considered as a group with specific problems.

SUBMITTER: Noten S

PROVIDER: S-EPMC8248089 | biostudies-literature |

REPOSITORIES: biostudies-literature

ACCESS DATA

Similar Datasets

Project description:INTRODUCTION:Musculoskeletal deformities and gait deviations are common features in ambulatory cerebral palsy (CP). Deformity correction through lower limb orthopaedic surgery is the standard form of care aimed at improving or preserving motor function. Current research on CP care does not always take into account individual patients' expectations and needs. There is a wide range of outcome domains and outcome measures used to assess outcome from treatment. This can lead to reporting bias and make it difficult to compare and contrast studies. A core outcome set (COS) would enhance the efficiency, relevance and overall quality of CP orthopaedic surgery research. The aim of this study is to establish a standardised COS for use in evaluating lower limb orthopaedic surgery for ambulatory children and young people with CP. METHODS/ANALYSIS:A set of outcomes domains and outcome measures will be developed as follows: (1) a qualitative evidence synthesis to identify relevant outcomes from children and young people and family perspective; (2) a scoping review to identify relevant outcomes and outcome measures; (3) qualitative research to explore the experience of key stakeholders; (4) prioritisation of outcome domains will be achieved through a two-round Delphi process with key stakeholders; (5) a final COS will be developed at a consensus meeting with representation from key stakeholder groups. ETHICS AND DISSEMINATION:Ethical approval for this study was granted in the UK by the Oxfordshire Research Ethics Committee B (REC reference 19/SC/0357). Informed consent will be obtained from participants taking part in the qualitative research and Delphi process. Study findings will be published in an open access journal and presented at relevant national and international conferences. Charities and associations will be engaged to promote awareness of the project COS results. TRIAL REGISTRATION NUMBER:COMET registration: 1236. PROSPERO REGISTRATION NUMBER:CRD42018089538.

Project description:ObjectivesAccording to the International Classification of Functioning, Disability and Health (ICF), functioning reflects the interplay between an individual's body structures and functions, activities, participation, environmental, and personal factors. To be useful in clinical practice, these concepts need to be operationalized into a practical and integral instrument. The Brief ICF Core Set for Hearing Loss (CSHL) provides a minimum standard for the assessment of functioning in adults with hearing loss. The objective of the present study was to operationalize the Brief CSHL into a digital intake tool that could be used in the otology-audiology practice for adults with ear and hearing problems as part of their intake assessment.DesignA three-step approach was followed: (1) Selecting and formulating questionnaire items and response formats, using the 27 categories of the Brief CSHL as a basis. Additional categories were selected based on relevant literature and clinical expertise. Items were selected from existing, commonly used disease-specific questionnaires, generic questionnaires, or the WHO's official descriptions of ICF categories. The response format was based on the existing item's response categories or on the ICF qualifiers. (2) Carrying out an expert survey and a pilot study (using the three-step test interview. Relevant stakeholders and patients were asked to comment on the relevance, comprehensiveness, and comprehensibility of the items. Results were discussed in the project group, and items were modified based on consensus. (3) Integration of the intake tool into a computer-based system for use in clinical routine.ResultsThe Brief CSHL was operationalized into 62 items, clustered into six domains: (1) general information, including reason for visit, sociodemographic, and medical background; (2) general body functions; (3) ear and hearing structures and functions; (4) activities and participation (A&P); (5) environmental factors (EF); and (6) personal factors (mastery and coping). Based on stakeholders' responses, the instructions of the items on A&P and EF were adapted. The three-step test interview showed that the tool had sufficient content validity but that some items on EF were redundant. Overall, the stakeholders and patients indicated that the intake tool was relevant and had a logical and clear structure. The tool was integrated in an online portal.ConclusionsIn the current study, an ICF-based e-intake tool was developed that aims to screen self-reported functioning problems in adults with an ear/hearing problem. The relevance, comprehensiveness, and comprehensibility of the originally proposed item list was supported, although the stakeholder and patient feedback resulted into some changes of the tool on item-level. Ultimately, the functioning information obtained with the tool could be used to promote patient-centered ear and hearing care taking a biopsychosocial perspective into account.