Introduction: The purpose of this study is to explore various aspects of health-related quality of life (HRQoL) in adults with spinal dysraphism and to compare to pediatric patients followed in a similar multi-disciplinary clinic.
Methods: We enrolled a prospective cohort of 31 patients from the multi-disciplinary adult spina bifida clinic. Surveys were distributed to all spina bifida patients. Data were collected using the HUI-3 health-utilities index focusing on vision, speech, hearing, dexterity, ambulation, cognition, emotions, and pain. Each participant received an overall HRQOL utility score and individual domain subscores. These were correlated with demographic and treatment variables. Scores were also compared to data from our pediatric spina bifida clinic, collected concurrently, and reported earlier. Analysis was done using SPSS Statistics (V21).
Results: There were 25 patients with myelomeningocele and 6 with closed spinal dysraphism. Eleven (36%) were community ambulators, and 17 (55%) were non-ambulatory. Among patients with myelomeningocele, 23 (92%) had CSF shunts in place, and 3 (12%) had undergone Chiari 2 decompression.
No association was found between gender, race, age, open vs. closed spinal dysraphism, insurance type, bowel or bladder continence and HRQoL. As expected, patients who were ambulatory in the community had higher ambulation QoL subscore than those who were not. History of CSF shunting, Chiari 2 decompression, and tethered cord release also had no correlation with HRQoL scores.
However, comparing HRQoL scores in adult patients to those of 159 patients followed in our pediatric clinic, we find a negative correlation between age and overall HRQoL as well as vision, emotion, pain, and ambulation subscores. Similarly, we find lower overall QoL and lower vision, emotion, and ambulation subscores in the patients from the adult clinic.
Conclusions: Patients followed in the adult spina bifida clinic have significantly lower HRQoL scores than those in the pediatric clinic. Other factors found to be significant in the pediatric sample, including myelomeningocele diagnosis and history of shunting, do not correlate with HRQoL in the adult clinic.
Patient Care: Recognizing the difference in quality of life between pediatric and adult patients with spina bifida (a disease considered mostly in the pediatric population) is the first step in improving our method of caring for adult patients with this lifelong condition.
Learning Objectives: By the conclusion of the session, participants should be able to recognize the potential for difference in quality of life reporting between pediatric and adult patients with spina bifida