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Developing Core Sets for Patients with Neonatal Brachial Plexus Palsies Based on the International Classification of Functioning, Disability and Health
Leiden University Medical Center, Leiden, Netherlands
Willem Pondaag; Cigdem Sarac; Rob GHH Nelissen; Martijn JA Malessy; Leiden University Medical Center
Aim: Symptoms of neonatal brachial plexus palsies (NBPP), including various degrees of denervation, muscle weakness, contractures, bone deformities and functional limitations, may vary widely in the course of time and from individual to individual. To date, no universally accepted overall framework is available to assess the outcome of patients with NBPP. The International Classification of Functioning, Disability and Health (ICF) offers a universal classification to describe the outcome of a disease, including their modification by contextual factors. ICF Core Sets are generally agreed-upon lists of ICF categories relevant for specific diseases. The objective of this presentation is to outline the proposed process for the development of ICF Core Sets specifically for patients with NBPP, and present the first results.
Methods: The first step is to conduct four preparatory studies to identify ICF categories important for NBPP: (a) a systematic literature review to identify outcome measures cited in published studies in patients with NBPP, (b) a qualitative study using focus groups to explore the perspective of patients with NBPP on functioning and health, (c) an expert survey to identify the most relevant problems of patients with NBPP from the perspective of clinical experts, and (d) a cross-sectional, multi-center study to describe functioning and health of patients with NBPP from a clinical perspective. A first version of ICF Core Sets (a brief and a comprehensive Core Set) will be defined at a consensus conference, which will integrate the evidence from the preparatory studies. In a second step, field testing will be done among patients with NBPP to validate this first version of the ICF Core Sets for NBPP.
Results: The results will be presented of interviews with small groups with up to eight individuals (focus groups). A topic guide based on the components Body Structures, Body Functions, Activities and Participation, Environmental Factors and Personal Factors of the bio-psycho-social model will be applied.
Conclusion: The proposed method to develop ICF Core Sets for NBPP yields a practical tool for multiple purposes: for clinicians to systematically assess and evaluate the individual’s functioning, for researchers to design and compare studies, and for patients to get more insight into their health problems and their management. Its application will especially stimulate comparability of outcome parameters.
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