Parents’ report on the health care management of spina bifida in early childhood

Issue title: Spina Bifida

Guest editors: Timothy Brei, Heidi Castillo, Jonathan Castillo and Judy Thibadeau

Article type: Research Article

Authors: Ong, Katherine S.^{a; *} | Reeder, Matthew^b | Alriksson-Schmidt, Ann I.^{c; *} | Rice, Sydney^d | Feldkamp, Marcia L.^b

Affiliations: [a] National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Atlanta, GA, USA | [b] Department of Pediatrics, Division of Medical Genetics, University of Utah, Salt Lake City, UT, USA | [c] Orthopedics, Department of Clinical Sciences, Skåne University Hospital, Lund University, Lund, Sweden | [d] Department of Pediatrics, University of Arizona, Tucson, AZ, USA

Correspondence: [*] Corresponding authors: Katherine Ong, MS E-88, Centers for Disease Control and Prevention, 4770 Buford Highway, Atlanta, GA, 30341, US. Tel.: +1 404 498 6279; Fax: +1 770 488 0270; E-mail: ylz4@cdc.gov and Ann I. Alriksson-Schmidt, Orthopedics, Department of Clinical Sciences, Sk°ane University Hospital, Lund University, Lund, Sweden. E-mail: ann.alrikssonschmidt@ med.lu.se.

Abstract: PURPOSE:This study aimed to describe health care use by type of health providers and care settings visited by children with spina bifida (SB) and to compare this use between children with and without a shunt. METHODS:Health care use data were extracted from a larger study on the health and functioning of children with SB aged 3–6 years. The present study focused on the medical information subsection of a parent-reported survey related to SB care, general care, specialty care (e.g., neurosurgery), emergency care, and complications related to SB and shunts. RESULTS:Parents of 101 children with SB participated. Most of the children were male with myelomeningocele and had a shunt. They visited a health care provider for SB care an average of 7.4 times and a specialist an average of 11.9 times in the previous 12 months. Most visited a multidisciplinary clinic for SB-related care and a private physician’s office for general care. Children with a shunt had more SB-related medical visits, more visits to a specialist, and a greater number of different types of specialists than those without it. Frequency of emergency room visits did not differ between the two groups. Health providers informed parents about headaches, vomiting, and fever as signs of complications, and some parents did report shunt-related complications. CONCLUSION:SB is a complex medical condition requiring that children receive medical care from various medical specialists, especially for children with a shunt. Findings on health care use suggest high levels of monitoring and care coordination that parents navigate to care for their child.

Keywords: Spina bifida, health care management, myelomeningocele

DOI: 10.3233/PRM-220027

Journal: Journal of Pediatric Rehabilitation Medicine, vol. 15, no. 4, pp. 621-631, 2022