The Association of Patient-Reported Health Literacy with Health-Related Quality of Life in Adolescents and Young Adults with Spina Bifida
James Rague, MD1, Soojin Kim, MD2, Josephine Hirsch, BA1, Theresa Meyer, RN, MS, CPN1, Ilina Rosoklija, MPH1, Jill Larson, MD1, Vineeta Swaroop, MD1, Robin Bowman, MD1, Diana Bowen, MD1, Earl Cheng, MD1, Elisa Gordon, PhD, MPH3, Grayson Holmbeck, PhD4, Daniel Chu, MD, MSPH5, Tamara Isakova, MD, MMSc3, Elizabeth Yerkes, MD1, David Chu, MD, MSCE1.
1Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA, 2University of British Columbia, Vancouver, BC, Canada, 3Northwestern University Feinberg School of Medicine, Chicago, IL, USA, 4Loyola University Chicago, Chicago, IL, USA, 5University of Alabama at Birmingham, Birmingham, AL, USA.
Background: Health related quality of life (HRQOL) in adolescents and young adults (AYA) with spina bifida (SB) has been shown to be poorer than in age-matched, healthy controls. In the non-SB population, better health literacy (HL) has been associated with increased HRQOL, secondary to greater involvement in healthcare decision-making, greater patient empowerment, and improved health outcomes. This association has not been studied in the SB population. We sought to assess the association between HL and HRQOL among AYAs with SB, hypothesizing that higher HL would be associated with higher HRQOL.Methods: Between June 2019 and March 2020, the Patient-Reported Outcome Measurement Information System Pediatric Global Health-7 (PGH-7), a measure of HRQOL, and the Brief Health Literacy Screening Tool (BRIEF) were administered to patients at least 12 years old seen in our multi-disciplinary SB Center. Questionnaires were self-administered or completed with parent/caregiver assistance at the time of clinic visits. English and Spanish language questionnaires were available. The primary outcome for this study was the PGH-7 normalized T-score. The primary exposure was the BRIEF score (categorized into inadequate, marginal, or adequate HL). Demographic and clinical characteristics were obtained from the medical record. Univariable analysis was performed to assess variation in PGH-7 T-score for each demographic and clinical characteristic. Nested, multivariable linear regression models assessed the association between HL and PGH-7 T-score, adjusting for potentially confounding variables.Results: During the study period, 232 eligible patients presented to clinic, of whom 226 (97.4%) completed the PGH-7 and BRIEF and were included in this study. The median age was 17.0 years (range 12-31). Most individuals were white (68.1%), female (54.0%), and had myelomeningocele (61.5%). Most questionnaires were self-administered (60.2%). Inadequate, marginal, and adequate HL levels were reported by 35.0%, 28.3%, and 36.7% of individuals. On univariable analysis, higher PGH-7 T-scores were associated with higher HL levels (Figure), age <18, male sex, white race, private insurance, non-myelomeningocele, and having no bladder incontinence. In the nested, sequentially-adjusted multivariable linear regression models, higher HL level was associated with a stepwise increase in PGH-7 T-score (Table). In the fully-adjusted model (Model 5), adequate and marginal HL, compared to inadequate HL, were associated with estimated increases in PGH-7 T-score of 3.3 (95%CI 0.2-6.3) and 1.1 (95%CI -2.0-4.2), respectively. Younger patient age and male sex also remained associated with higher PGH-7 T-scores. Bladder and bowel incontinence were not associated with HRQOL.Conclusions: HRQOL was associated with HL after adjusting for demographic and clinical factors. Strategies are needed to provide HL-tailored care programs and to promote HL in youth with SB in order to improve HRQOL. 
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