Affiliations: Division of General Pediatrics, Boston
Children's Hospital, Boston, MA, USA | Institute for Community Inclusion, University of
Massachusetts, Boston, MA, USA | Division of Adolescent Medicine, Boston
Children's Hospital, Boston, MA, USA | Department of Psychiatry, Children's
Hospital, Boston, MA, USA | Department of Urology, Boston Children's
Hospital, Boston, MA, USA | Department of Pediatrics, Harvard Medical School,
Harvard, MA, USA
Note: [] Correspondence: Dr. Jay Berry, Complex Care Service, Boston
Children's Hospital, 21 Autumn St. Room 212.2, Boston, MA 02115, USA. Tel.: +1
617 355 6162; Fax: +1 617 730 0252; E-mail: Jay.Berry@childrens.harvard.edu
Abstract: Although 85% of children with spina bifida survive to adulthood,
there is little information and few proven service practices to guide their
healthcare transition (HCT) to adult care. Our objective was to deepen our
understanding of the factors that facilitate the HCT experience of these
patients. Individual interviews with patients with spina bifida (n=15) and
their parents (n=14) were performed to investigate levels of HCT readiness,
attitudes, and practices. Data were analyzed for themes that mapped to
theory-based constructs and synthesized as strategic directions for tailoring
services. Patient age averaged 18.0 ± 2.8 yr (range 14–28 yr). Factors
common to youth who were progressing toward HCT included individual factors:
higher cognitive functioning, strong interest in being independent from
parents; family factors: exposure to a parenting style that fostered
independence; service factors: success negotiating primary care
responsibilities with familiar adult healthcare providers. Factors common to
youth who were not progressing towards HCT included individual factors: lower
cognitive ability, impaired physical ability; family factors: lack of parent
awareness of medical transition needs, and, service factors: strong dependence
on pediatric providers for care coordination, and negative experiences with
adult specialists perceived as not anticipating their needs. Tailoring HCT for
individuals with spina bifida may be best done in conjunction with HCT
readiness assessments conducted at intervals throughout the HCT period. These
assessments should include current and projected cognitive functioning; dyadic
support to align patients and parents around HCT goals and care coordination
tasks; and methods to familiarize patients and families with adult
providers.
Keywords: Spina bifida, healthcare transition to adulthood, children with special healthcare needs, care coordination
