Meaningful outcomes for children with open spina bifida and their caregivers

Abstract

EDITOR-Heydenrijk-Kikkert et al. involved children with neurodisability and their caregivers in a survey to identify outcomes of health and functioning that mattered most to them. 1 They found that survival and caregiver burden of care were rated as very important by 76% and 64% of responders respectively. We looked at birth head circumference as a possible predictor of these 'meaningful' outcomes of survival and need for daily care in the Cambridge cohort of open spina bifida.The cohort comprises 117 consecutive cases of open spina bifida whose backs were closed non-selectively at birth between 1963 and 1971. 2 The cohort is unique, having been reviewed eight times over 50 years with 99% follow-up. [3][4][5]