Out-of-pocket and indirect expenditure of spina bifida and hydrocephalus patients admitted for inpatient treatment and follow-up at two university-affiliated hospitals in Ethiopia.

INTRODUCTION: In Ethiopia approximately 3,200,000 babies are born annually and 41.09 per 10,000 live births are affected by spina bifida. Hydrocephalus (HCP) is another common pediatric neurosurgical condition with studies in Ethiopia showing the most common etiology is post spina bifida closure. The out-of-pocket expense (OOPE) and indirect expense of patients treated surgically for spina bifida and hydrocephalus during the first year of life were assessed. METHODS: A prospective hospital-based study was done on patients treated surgically for spina bifida and HCP in two university-affiliated hospitals, between April 1st, 2022, and April 1st, 2023. Data on direct and indirect expenses were collected during inpatient care and follow-up. Catastrophic health expenditure (CHE) was assessed, defined as total expenditure exceeding 10% of the total annual household expenditure. RESULT: A total of 245 patients were eligible for analysis. The median annual total expenditure of households for treatment was ETB 11,510.00 with ETB 5700.00 being indirect expenditure. Forty-nine percent of the households suffered CHE. In multivariate analysis, the factors which were found to have a statistically significant association with CHE were the hospital where the patient received the treatment, the household's wealth quintile, the place of residency, and pre-admission duration of stay. CONCLUSION: Our study revealed a high CHE in households with spina bifida and HCP. We recommend working on primary prevention of spina bifida, expanding surgical services regionally to minimize costs associated with travel for surgical care, and reducing pre-admission duration of stay by improving evaluation and investigations at outpatient clinics.

Spina bifida management in low- and middle-income countries - a comprehensive policy approach.

INTRODUCTION: Globally, spina bifida (SB) occurs more often in low- and middle-income countries, where the healthcare demands are often quite challenging. Several social/societal issues and/or lack of government support makes for incomplete SB management in many areas. Clearly, neurosurgeons should be knowledgeable about initial closure techniques and the basics of SB management, but must also advocate for the patients outside our immediate scope of care. METHODS: Recently, the Comprehensive Policy Recommendations for the Management of Spina Bifida and Hydrocephalus in Low- and Middle-Income Countries (CHYSPR) and the Intersectoral Global Action Plan on Epilepsy and other Neurological Disorders (IGAP) publications emphasized the need for a more unified approach to SB care. Although both documents discuss other neurological conditions, they support SB as a congenital malformation needing attention. RESULTS: We identified several similarities for comprehensive SB care in these approaches - including education, governance, advocacy, and the need for continuum of care. Prevention was recognized as the most important aspect for SB going forward. A significant return of investment was noted, and both documents recommend more active neurosurgical involvement (i.e., folic acid fortification). CONCLUSION: A new call for holistic and comprehensive care for SB management is recognized. Neurosurgeons are called upon to use solid science to educate governments and actively participate to advocate for better care and most importantly, prevention. Folic acid fortification schemes are mandatory and neurosurgeons should advocate for global strategies.