Purpose: To explore and compare the perspectives of patients and their parents (PPs) with a brachial plexus birth injury (BPBI) with those of health care professionals (HCPs).
Materials and methods: We conducted a study using a questionnaire among PPs and HCPs. Importance of different outcome categories was scored on a Likert scale. Items were linked to corresponding categories of the International Classification of Functioning, Disability and Health. Means were compared using analysis of variance (ANOVA).
Results: Data were collected from 184 patients and 65 HCPs. We found a difference in 7/14 outcome categories between joint PP groups and HCPs. Parents scored outcome evaluation categories as more important than patients, categories filled out together by patient and parent scored in between (p < 0.05). The majority of PPs and HCPs rated outcome assessment as important in more domains than "Body functions" and "Body structures". The biggest difference was found in the importance of evaluation of pain.
Conclusions: Outcome assessment in the domains "Activities and participation" and "Environmental factors" was rated as important by both PPs and HCPs. Evaluation of pain was more often scored as important by PPs. Different domains seem to be underestimated by HCPs and need more attention during consultation. Implications for rehabilitationThe importance of outcome evaluation concerning "Pain", "Interaction with peers", and "Interaction with medical and paramedical specialists" should be taken into account in the rehabilitation for this specific group of patients and their parents (PPs).Comparison of perspectives on functioning between brachial plexus birth injury (BPBI) PPs and health care professionals.Outcome assessment in domains "Activities and participation" and "Environmental factors" is important.Health care professionals undervalue the importance of pain evaluation in BPBI as compared with PPs.
Keywords: Brachial plexus birth injury; brachial plexus surgery; outcome evaluation; pain; patient perspective.