Abstract

To assess the effectiveness of an interdisciplinary ambulatory rehabilitation programme for persons with spina bifida in an Australian community cohort. Fifty-four participants randomized to a treatment group (n = 27) for a high-intensity rehabilitation programme (with cognitive behavioural therapy) or a control group (n = 27) comprising usual care. Outcome measures include: Disability: Urogenital Distress Inventory (UDI6), Incontinence Impact Questionnaire-7 (IIQ7), American Urological Association Symptom Index (AUA), Wexner-Faecal Incontinence Score (WFIS), Neurological Disability Scale (NDS); Depression, Anxiety Stress Scale (DASS), McGill Quality of Life (MQOL), Brief COPE Scale, Genera-lized Self-efficacy Scale (GSE). Assessments were made at baseline and 3-months post-intervention. Adjusted for baseline disease and demographic covariates, the intervention group improved significantly at 3-month follow-up for primary and secondary outcomes, with moderate to large effect sizes (r): urinary/bowel dysfunction (AUA, UDI6, IIQ7, WFIS) (p < 0.001 for all, r = 0.4-0.7); and cognitive function: NDS "cognitive" and "mood" (p < 0.01, r = 0.6 for both); DASS "depression", "anxiety" and "stress" (p < 0.001 for all, r = 0.5-0.7); MQOL total (p = 0.013, r = 0.5), "psychological symptoms" (p < 0.001, r = 0.8); "active coping" (p = 0.035) and "self-efficacy" scores (GSE p < 0.001). No difference between groups was noted in other subscales. Targeted rehabilitation can improve clinical outcomes in persons with spina bifida. Further research is needed for longer-term outcomes related to "ageing" and participation restriction.

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