Family satisfaction, pain, and quality-of-life in emerging adults with spina bifida: A longitudinal analysis

Objective: This study uses the Life Course Model for Spina Bifida (SB) to advance knowledge of factors associated with change in quality-of-life (QOL) among emerging adults with SB. Design: Forty-eight participants (mean [SD], 22.04 [2.16] yrs) completed selfreport questionnaires at two time points, 15 mos apart. FourQOL domains (physical health, psychological, social relationships, and environment) were measured using theWorld Health Organization QOLYBREF version. SB clinical data were collected via chart reviews. Paired t tests and reliable change indices evaluated group-and individual-level QOL change, respectively. Multiple regression analyses tested the contributions of the Life Course variables in explaining change in QOL over time. Results: No significant group-level differences in the QOL domains were found between time 1 and time 2, but there was substantial individual variation in QOL over time. SB severity was related to a decline only in psychological QOL (B =j0.68, P = 0.02). Increased pain was associated with reduced physical health (B =j0.29, P = 0.049) and psychological (B =j0.29, P = 0.03) QOL at time 2, whereas greater family satisfaction was related to improvedQOL in several domains. Conclusions: Clinicians should be aware of the negative impact of pain and the protective influence of family satisfaction on QOL in emerging adults with SB.