Assessment of transitional care in pediatric neurosurgery: a single-center analysis and survey of patients and parents

OBJECTIVE Transitional care in pediatric neurosurgery is challenging for patients and their parents. The specific needs of neurologically affected patients and the unique characteristics of the pathologies affecting pediatric neurosurgical patients compared with adults make a comprehensive, well-organized transition process essential for patient well-being and ensuring continuity of care. Little is known about patients’ preferences and opinions on this topic. This study aimed to assess the patients’ and parents’ expectations and perceptions of the transition process. METHODS The authors retrospectively identified patients aged 16 to 30 years who underwent surgery in their pediatric neurosurgical department. The patients were divided into two groups: those about to transition and those who had already transitioned. Transition models were identified within the latter group. Parents of eligible patients were contacted for a telephone survey, and the patients themselves were included when possible. A modified version of the established Got Transition questionnaire from the National Alliance to Advance Adolescent Health was used. RESULTS Thirty-four patients were included, and 44 telephone surveys were conducted with the patients and their parents. Three transition models were applied, with 7 patients (41.2%) transitioned using the continued caregiver model, 9 patients (52.9%) using the shared caregiver model, and 1 patient (5.9%) using the specialized clinic model. Patient and parent satisfaction was highest among the patients transitioned using the continued caregiver and specialized clinic models. CONCLUSIONS Neurosurgical conditions in children differ significantly from those in adults, creating unique transitional care challenges. The continuing caregiver model has been shown to provide continuity of care and high patient and parent satisfaction. However, there are differences in the perspectives of parents and patients regarding transitional care, with parents typically expressing greater concern and need for detailed information. Implementing a well-structured and individualized transition process is essential to reduce the caregiving burden on families and healthcare institutions.