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BACKGROUND: Spina bifida (SB) is a chronic neurological condition affecting multiple areas, including mobility, bladder and bowel function. Literature suggesting that successful management is associated with improved health-related quality of life (HRQOL) is largely based on generic and non-validated HRQOL instruments. Our goal was to develop and validate a clinically useful, self-reported, disease-specific HRQOL tool for adults with SB, the Riley Evaluation of Quality of Life in Spina Bifida instrument for Adults (REQoLSB-A).

METHODS: The instrument was developed for adults (≥18 years old) with a history of myelomeniongocele or lipomeningocele. Those with poor English proficiency or inability to answer questions due to developmental delay were excluded. Questions making up the REQoLSB-A were generated from 150 items obtained from 20 semi-structured interviews with patients and families, published HRQOL instruments and expert opinion. Domains of interest included: cognition, independence, emotional impact, social interactions, physical environment, mobility, future plans, sexuality, healthcare interactions, toileting, urinary and fecal continence. We also administered the generic World Health Organization HRQOL instrument, WHOQOL-BREF. Community controls, without SB or children with SB, were recruited from among hospital staff and colleagues.
Items were then validated using a paper version in the multidisciplinary SB clinic, as well as an online version advertised through social media, over a 16-month period (January 2012 to May 2014). Groups were compared using non-parametric statistics. Item reduction, summary and subscale scores were determined with content and factor analyses. Reliability and validity were assessed by test-retest correlation, Cronbach’s alpha coefficient, interscale correlation and correlation with the WHOQOL-BREF.

RESULTS: A total of 484 adults with SB participated: 55 (11.4%) in clinic and 429 (88.6%) online, including 104 (21.5%) from outside the United States. Participants’ median age was 31 years (range 18-73), 32.6% were male, 50.2% were community ambulators and 64.4% were shunted. The control group consisted of 116 individuals, similar to the participants in age (33 years, range 18-62, p=0.08) and gender (41.4% male, p=0.08). Of the initial 150 HRQOL items, we validated responses to 53 items. The final instrument has excellent statistical properties, including reliability and validity.

CONCLUSIONS: REQoLSB-A is a short, valid and reliable tool for evaluating HRQOL among adults with SB. It assesses a comprehensive array of emotional, urinary and bowel symptoms, making it suitable for clinical use.