Walking and living independently with spina bifida: a 50‐year prospective cohort study

AIM: To describe trends in walking and living independently in a cohort of consecutive cases of spina bifida, followed‐up over 50 years. METHOD: From 1972 to 2017, a cohort of 117 (born 1963–1971, 50 males, 67 females) survivors and/or carers was surveyed approximately every 5 years by clinical examination and/or postal questionnaire/telephone interview. The Office for National Statistics provided details of deaths. RESULTS: The follow‐up in 2016 and 2017 was 99% (116/117). There were 37 survivors (17 males, 20 females) aged 46 to 53 years and 79 deaths (50y survival, 32%). The percentage of survivors who could walk more than 50m at the mean ages of 9 years, 18 years, 25 years, 30 years, 35 years, 40 years, 45 years, and 50 years was 51% (38/75), 50% (34/68), 33% (20/61), 30% (17/57), 30% (16/54), 30% (14/46), 31% (12/39), and 27% (10/37) respectively. However, the percentage living independently in the community after age 25 years increased over time: 23% (14/61); 37% (21/57); 41% (22/54); 39% (18/46); 56% (22/39); and 54% (20/37). Living independently at age 50 years was more common in survivors without a history of raised intracranial pressure or cerebrospinal fluid shunt revisions. INTERPRETATION: In this unselected cohort, mobility declined with age, possibly because of increasing obesity and deteriorating health. By contrast, partly because survival was better in those least disabled, the percentage living independently increased. WHAT THIS PAPER ADDS: By age 50 years, the percentage of patients who could walk more than 50m had declined to 27%. By age 50 years, the percentage living independently had doubled to over 50%. Survivors without a history of raised intracranial pressure or cerebrospinal fluid shunt revision are more likely to live independently.