Factors associated with self-management independence and quality of life for adolescents and young adults with spina bifida engaged in a guideline-based transition clinic

Article type: Research Article

Authors: Fremion, Ellen^{a; b; *} | Madey, Rachel^c | Staggers, Kristen A.^d | Morrison-Jacobus, Melissa^b | Laufman, Larry^a | Castillo, Heidi^e | Castillo, Jonathan^e

Affiliations: [a] Transition Medicine, Department of Internal Medicine, Baylor College of Medicine, Houston, TX, USA | [b] Spina Bifida Transition Clinic, Texas Children’s Hospital, Houston, TX, USA | [c] Baylor College of Medicine, Houston, TX, USA | [d] Institute for Clinical and Translational Research, Baylor College of Medicine, Houston, TX, USA | [e] Developmental Pediatrics, Department of Pediatrics, Baylor College of Medicine, Houston, TX, USA

Correspondence: [*] Corresponding author: Ellen Fremion, Transition Medicine, Department of Internal Medicine, Baylor College of Medicine, MD 7200 Cambridge St. Suite 8A, Houston, Texas, USA. Tel.: +1 713 7986333; Fax: +1 713 7980198; E-mail: [email protected].

Abstract: PURPOSE:To determine characteristics associated with self-management independence and quality of life (QOL) among adolescents and young adults with spina bifida (AYASB) engaged in a spina bifida (SB) health care transition clinic. METHODS:During SB transition visits, Eighty-eight AYASB ages 14-20 completed the Adolescent/Young Adult Self-management and Independence Scale II Self-Report/SB (AMIS II-SR/SB), scores ranging from 1–7 with 7 indicating full independence in activities, and the QUAlity of Life Assessment in Spina bifida for Teens (QUALAS-T), which has two subscales, family/independence (QFI) and bowel/bladder (QBB), with scores ranging from 0-100 with 100 indicating maximal QOL score. Demographic and clinical variables were collected from the electronic medical record. RESULTS:The baseline AMIS II-SR/SB score was 3.3 (SD 1.0). Baseline scores for QUALAS-T QFI and QBB subscales were 73.8 (SD 19.9) and 63.8 (SD 25.8). Older age was associated with a higher baseline AMIS II-SR/SB score (p = 0.017). Over time, AMIS II-SR/SB total significantly improved (p < 0.001), but QFI and QBB did not. AYASB not on chronic intermittent catheterization (CIC) and those using urethral CIC significantly improved in AMIS II-SR/SB total scores (p = 0.001), but those using abdominal channel CIC did not. CONCLUSION:Baseline bladder management method was associated with self-management improvement for AYASB engaged in a SB-specific transition clinic.

Keywords: Spina bifida, myelomeningocele, evidence-based medicine, minority health, transition to adult care

DOI: 10.3233/PRM-200758

Journal: Journal of Pediatric Rehabilitation Medicine, vol. 14, no. 4, pp. 631-641, 2021