Abstract
OBJECTIVE: Perinatal brain injury can result in long-term neurodevelopmental sequelae. To examine the most significant consequences from a patient perspective, this questionnaire study explored the strengths and difficulties in daily functioning after perinatal brain injury, by child self-report and parent-proxy report. STUDY DESIGN: Cross-sectional questionnaire study of participants ≥8 years of age born with hypoxic-ischemic encephalopathy treated with therapeutic hypothermia, or with perinatal arterial ischemic stroke, and their parents. Open-ended questions regarding strengths and difficulties in daily functioning were analyzed by thematic analysis using the International Classification of Functioning, Disability and Health as coding framework. RESULTS: Of the 102 participants (hypoxic-ischemic encephalopathy: n = 50, perinatal arterial ischemic stroke: n = 52) with a median age of 12.4 (range 8-25) years, 81% of the questionnaires (n = 83) were filled out by both participants and parents. Participants mainly reported participation in recreational activities and school-related learning abilities as strengths, while parents most frequently highlighted their child's personality traits. Difficulties were reported by 91% of participants and 76% of parents. Both parents and participants often mentioned difficulties with cognitive functioning including attention, memory, and processing speed. Furthermore, parents described social skills and movement difficulties, while participants mostly reported learning difficulties. Half of the parents reported that the difficulties significantly impacted their families' daily lives. CONCLUSIONS: Children and young adults with a history of perinatal brain injury face a variety of challenges in their everyday lives, emphasizing the importance of taking the full spectrum of sequelae into account in care, counseling, and future research.