The Association of Health Literacy with Health-Related Quality of Life in Youth and Young Adults with Spina Bifida: A Cross-Sectional Study

James T. Rague; Soojin Kim; Josephine Hirsch; Theresa Meyer; Ilina Rosoklija; Jill E. Larson; Vineeta T. Swaroop; Robin Bowman; Diana K. Bowen; Earl Y. Cheng; Elisa J. Gordon; Grayson Holmbeck; Daniel I. Chu; Tamara Isakova; Elizabeth B. Yerkes; David I. Chu

doi:10.1016/j.jpeds.2022.08.005

The Association of Health Literacy with Health-Related Quality of Life in Youth and Young Adults with Spina Bifida: A Cross-Sectional Study

James T. Rague, Soojin Kim, Josephine Hirsch, Theresa Meyer, Ilina Rosoklija, Jill E. Larson, Vineeta T. Swaroop, Robin Bowman, Diana K. Bowen, Earl Y. Cheng, Elisa J. Gordon, Grayson Holmbeck, Daniel I. Chu, Tamara Isakova, Elizabeth B. Yerkes, David I. Chu^*

^*Corresponding author for this work

Research output: Contribution to journal › Article › peer-review

7 Scopus citations

Abstract

Objective: The objective of the study was to determine if health literacy is associated with health-related quality of life (HRQOL) in adolescents and young adults (AYAs) with spina bifida. Study design: 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 ≥12 years old with a diagnosis of spina bifida seen in our multidisciplinary spina bifida center. Questionnaires were completed at scheduled clinic visits. The primary outcome was the PGH-7 normalized T-score. The primary exposure was the BRIEF score. Demographic and clinical characteristics were obtained from the medical record. Nested, multivariable linear regression models assessed the association between health literacy and the PGH-7 score. Results: Of 232 eligible patients who presented to clinic, 226 (97.4%) met inclusion criteria for this study. The median age was 17.0 years (range: 12-31). Most individuals were female (54.0%) and had myelomeningocele (61.5%). Inadequate, marginal, and adequate health literacy levels were reported by 35.0%, 28.3%, and 36.7% of individuals. In univariable analysis, higher health literacy levels were associated with higher PGH-7 scores. In nested, sequentially adjusted multivariable linear regression models, a higher health literacy level was associated with a stepwise increase in the PGH-7 score. In the fully adjusted model, adequate health literacy and marginal health literacy, compared with inadequate health literacy, were associated with increases in a PGH-7 score of 3.3 (95% CI: 0.2-6.3) and 1.1 (95% CI: −2.0 to 4.2), respectively. Conclusions: Health literacy was associated with HRQOL after adjusting for demographic and clinical factors. Strategies incorporating health literacy are needed to improve HRQOL in AYAs with spina bifida.

Original language	English (US)
Pages (from-to)	156-163.e2
Journal	journal of pediatrics
Volume	251
DOIs	https://doi.org/10.1016/j.jpeds.2022.08.005
State	Published - Dec 2022

Funding

This work was supported in part by research grants from the National Institute of Diabetes and Digestive and Kidney Diseases (K23 DK125670, K12 HS023009) (2017–2019) from the Agency for Healthcare Research and Quality (AHRQ) through the UAB Center for Outcomes and Effectiveness Research and Education (COERE) and Minority Health and Health Research Center (MHRC) and a K23 MD013903 (2019–2022) from the National Institute on Minority Health and Health Disparities (NIMHD). The National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, and AHRQ had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; and preparation, review, or approval of the manuscript. The views expressed in this article are those of the authors and do not necessarily represent the official view of the NIH, NIDDK, or AHRQ. T.I. reports consulting honorariums outside of the submitted work from Akebia Therapeutics, Inc, Kyowa Kirin Co, Ltd, and LifeSci Capital, LLC. The other authors declare no conflicts of interest. This work was supported in part by research grants from the National Institute of Diabetes and Digestive and Kidney Diseases ( K23 DK125670 , K12 HS023009) (2017–2019) from the Agency for Healthcare Research and Quality (AHRQ) through the UAB Center for Outcomes and Effectiveness Research and Education (COERE) and Minority Health and Health Research Center (MHRC) and a K23 MD013903 (2019–2022) from the National Institute on Minority Health and Health Disparities (NIMHD). The National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, and AHRQ had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; and preparation, review, or approval of the manuscript. The views expressed in this article are those of the authors and do not necessarily represent the official view of the NIH, NIDDK, or AHRQ. T.I. reports consulting honorariums outside of the submitted work from Akebia Therapeutics, Inc, Kyowa Kirin Co, Ltd, and LifeSci Capital, LLC. The other authors declare no conflicts of interest.

Keywords

adolescents and young adults
myelomeningocele
patient-reported outcomes
spinal dysraphism

ASJC Scopus subject areas

Pediatrics, Perinatology, and Child Health

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10.1016/j.jpeds.2022.08.005

Cite this

Rague, J. T., Kim, S., Hirsch, J., Meyer, T., Rosoklija, I., Larson, J. E., Swaroop, V. T., Bowman, R., Bowen, D. K., Cheng, E. Y., Gordon, E. J., Holmbeck, G., Chu, D. I., Isakova, T., Yerkes, E. B., & Chu, D. I. (2022). The Association of Health Literacy with Health-Related Quality of Life in Youth and Young Adults with Spina Bifida: A Cross-Sectional Study. journal of pediatrics, 251, 156-163.e2. https://doi.org/10.1016/j.jpeds.2022.08.005

@article{20c5770af0164ba1a8afa878b956e804,

title = "The Association of Health Literacy with Health-Related Quality of Life in Youth and Young Adults with Spina Bifida: A Cross-Sectional Study",

abstract = "Objective: The objective of the study was to determine if health literacy is associated with health-related quality of life (HRQOL) in adolescents and young adults (AYAs) with spina bifida. Study design: 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 ≥12 years old with a diagnosis of spina bifida seen in our multidisciplinary spina bifida center. Questionnaires were completed at scheduled clinic visits. The primary outcome was the PGH-7 normalized T-score. The primary exposure was the BRIEF score. Demographic and clinical characteristics were obtained from the medical record. Nested, multivariable linear regression models assessed the association between health literacy and the PGH-7 score. Results: Of 232 eligible patients who presented to clinic, 226 (97.4%) met inclusion criteria for this study. The median age was 17.0 years (range: 12-31). Most individuals were female (54.0%) and had myelomeningocele (61.5%). Inadequate, marginal, and adequate health literacy levels were reported by 35.0%, 28.3%, and 36.7% of individuals. In univariable analysis, higher health literacy levels were associated with higher PGH-7 scores. In nested, sequentially adjusted multivariable linear regression models, a higher health literacy level was associated with a stepwise increase in the PGH-7 score. In the fully adjusted model, adequate health literacy and marginal health literacy, compared with inadequate health literacy, were associated with increases in a PGH-7 score of 3.3 (95% CI: 0.2-6.3) and 1.1 (95% CI: −2.0 to 4.2), respectively. Conclusions: Health literacy was associated with HRQOL after adjusting for demographic and clinical factors. Strategies incorporating health literacy are needed to improve HRQOL in AYAs with spina bifida.",

keywords = "adolescents and young adults, myelomeningocele, patient-reported outcomes, spinal dysraphism",

author = "Rague, {James T.} and Soojin Kim and Josephine Hirsch and Theresa Meyer and Ilina Rosoklija and Larson, {Jill E.} and Swaroop, {Vineeta T.} and Robin Bowman and Bowen, {Diana K.} and Cheng, {Earl Y.} and Gordon, {Elisa J.} and Grayson Holmbeck and Chu, {Daniel I.} and Tamara Isakova and Yerkes, {Elizabeth B.} and Chu, {David I.}",

note = "Funding Information: This work was supported in part by research grants from the National Institute of Diabetes and Digestive and Kidney Diseases (K23 DK125670, K12 HS023009) (2017–2019) from the Agency for Healthcare Research and Quality (AHRQ) through the UAB Center for Outcomes and Effectiveness Research and Education (COERE) and Minority Health and Health Research Center (MHRC) and a K23 MD013903 (2019–2022) from the National Institute on Minority Health and Health Disparities (NIMHD). The National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, and AHRQ had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; and preparation, review, or approval of the manuscript. The views expressed in this article are those of the authors and do not necessarily represent the official view of the NIH, NIDDK, or AHRQ. T.I. reports consulting honorariums outside of the submitted work from Akebia Therapeutics, Inc, Kyowa Kirin Co, Ltd, and LifeSci Capital, LLC. The other authors declare no conflicts of interest. Funding Information: This work was supported in part by research grants from the National Institute of Diabetes and Digestive and Kidney Diseases ( K23 DK125670 , K12 HS023009) (2017–2019) from the Agency for Healthcare Research and Quality (AHRQ) through the UAB Center for Outcomes and Effectiveness Research and Education (COERE) and Minority Health and Health Research Center (MHRC) and a K23 MD013903 (2019–2022) from the National Institute on Minority Health and Health Disparities (NIMHD). The National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, and AHRQ had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; and preparation, review, or approval of the manuscript. The views expressed in this article are those of the authors and do not necessarily represent the official view of the NIH, NIDDK, or AHRQ. T.I. reports consulting honorariums outside of the submitted work from Akebia Therapeutics, Inc, Kyowa Kirin Co, Ltd, and LifeSci Capital, LLC. The other authors declare no conflicts of interest. Publisher Copyright: {\textcopyright} 2022 Elsevier Inc.",

year = "2022",

month = dec,

doi = "10.1016/j.jpeds.2022.08.005",

language = "English (US)",

volume = "251",

pages = "156--163.e2",

journal = "journal of pediatrics",

issn = "0022-3476",

publisher = "Elsevier Inc.",

}

Rague, JT, Kim, S, Hirsch, J, Meyer, T, Rosoklija, I, Larson, JE , Swaroop, VT , Bowman, R , Bowen, DK , Cheng, EY, Gordon, EJ, Holmbeck, G, Chu, DI, Isakova, T , Yerkes, EB & Chu, DI 2022, 'The Association of Health Literacy with Health-Related Quality of Life in Youth and Young Adults with Spina Bifida: A Cross-Sectional Study', journal of pediatrics, vol. 251, pp. 156-163.e2. https://doi.org/10.1016/j.jpeds.2022.08.005

TY - JOUR

T1 - The Association of Health Literacy with Health-Related Quality of Life in Youth and Young Adults with Spina Bifida

T2 - A Cross-Sectional Study

AU - Rague, James T.

AU - Kim, Soojin

AU - Hirsch, Josephine

AU - Meyer, Theresa

AU - Rosoklija, Ilina

AU - Larson, Jill E.

AU - Swaroop, Vineeta T.

AU - Bowman, Robin

AU - Bowen, Diana K.

AU - Cheng, Earl Y.

AU - Gordon, Elisa J.

AU - Holmbeck, Grayson

AU - Chu, Daniel I.

AU - Isakova, Tamara

AU - Yerkes, Elizabeth B.

AU - Chu, David I.

N1 - Funding Information: This work was supported in part by research grants from the National Institute of Diabetes and Digestive and Kidney Diseases (K23 DK125670, K12 HS023009) (2017–2019) from the Agency for Healthcare Research and Quality (AHRQ) through the UAB Center for Outcomes and Effectiveness Research and Education (COERE) and Minority Health and Health Research Center (MHRC) and a K23 MD013903 (2019–2022) from the National Institute on Minority Health and Health Disparities (NIMHD). The National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, and AHRQ had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; and preparation, review, or approval of the manuscript. The views expressed in this article are those of the authors and do not necessarily represent the official view of the NIH, NIDDK, or AHRQ. T.I. reports consulting honorariums outside of the submitted work from Akebia Therapeutics, Inc, Kyowa Kirin Co, Ltd, and LifeSci Capital, LLC. The other authors declare no conflicts of interest. Funding Information: This work was supported in part by research grants from the National Institute of Diabetes and Digestive and Kidney Diseases ( K23 DK125670 , K12 HS023009) (2017–2019) from the Agency for Healthcare Research and Quality (AHRQ) through the UAB Center for Outcomes and Effectiveness Research and Education (COERE) and Minority Health and Health Research Center (MHRC) and a K23 MD013903 (2019–2022) from the National Institute on Minority Health and Health Disparities (NIMHD). The National Institutes of Health, National Institute of Diabetes and Digestive and Kidney Diseases, and AHRQ had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; and preparation, review, or approval of the manuscript. The views expressed in this article are those of the authors and do not necessarily represent the official view of the NIH, NIDDK, or AHRQ. T.I. reports consulting honorariums outside of the submitted work from Akebia Therapeutics, Inc, Kyowa Kirin Co, Ltd, and LifeSci Capital, LLC. The other authors declare no conflicts of interest. Publisher Copyright: © 2022 Elsevier Inc.

PY - 2022/12

Y1 - 2022/12

N2 - Objective: The objective of the study was to determine if health literacy is associated with health-related quality of life (HRQOL) in adolescents and young adults (AYAs) with spina bifida. Study design: 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 ≥12 years old with a diagnosis of spina bifida seen in our multidisciplinary spina bifida center. Questionnaires were completed at scheduled clinic visits. The primary outcome was the PGH-7 normalized T-score. The primary exposure was the BRIEF score. Demographic and clinical characteristics were obtained from the medical record. Nested, multivariable linear regression models assessed the association between health literacy and the PGH-7 score. Results: Of 232 eligible patients who presented to clinic, 226 (97.4%) met inclusion criteria for this study. The median age was 17.0 years (range: 12-31). Most individuals were female (54.0%) and had myelomeningocele (61.5%). Inadequate, marginal, and adequate health literacy levels were reported by 35.0%, 28.3%, and 36.7% of individuals. In univariable analysis, higher health literacy levels were associated with higher PGH-7 scores. In nested, sequentially adjusted multivariable linear regression models, a higher health literacy level was associated with a stepwise increase in the PGH-7 score. In the fully adjusted model, adequate health literacy and marginal health literacy, compared with inadequate health literacy, were associated with increases in a PGH-7 score of 3.3 (95% CI: 0.2-6.3) and 1.1 (95% CI: −2.0 to 4.2), respectively. Conclusions: Health literacy was associated with HRQOL after adjusting for demographic and clinical factors. Strategies incorporating health literacy are needed to improve HRQOL in AYAs with spina bifida.

AB - Objective: The objective of the study was to determine if health literacy is associated with health-related quality of life (HRQOL) in adolescents and young adults (AYAs) with spina bifida. Study design: 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 ≥12 years old with a diagnosis of spina bifida seen in our multidisciplinary spina bifida center. Questionnaires were completed at scheduled clinic visits. The primary outcome was the PGH-7 normalized T-score. The primary exposure was the BRIEF score. Demographic and clinical characteristics were obtained from the medical record. Nested, multivariable linear regression models assessed the association between health literacy and the PGH-7 score. Results: Of 232 eligible patients who presented to clinic, 226 (97.4%) met inclusion criteria for this study. The median age was 17.0 years (range: 12-31). Most individuals were female (54.0%) and had myelomeningocele (61.5%). Inadequate, marginal, and adequate health literacy levels were reported by 35.0%, 28.3%, and 36.7% of individuals. In univariable analysis, higher health literacy levels were associated with higher PGH-7 scores. In nested, sequentially adjusted multivariable linear regression models, a higher health literacy level was associated with a stepwise increase in the PGH-7 score. In the fully adjusted model, adequate health literacy and marginal health literacy, compared with inadequate health literacy, were associated with increases in a PGH-7 score of 3.3 (95% CI: 0.2-6.3) and 1.1 (95% CI: −2.0 to 4.2), respectively. Conclusions: Health literacy was associated with HRQOL after adjusting for demographic and clinical factors. Strategies incorporating health literacy are needed to improve HRQOL in AYAs with spina bifida.

KW - adolescents and young adults

KW - myelomeningocele

KW - patient-reported outcomes

KW - spinal dysraphism

UR - http://www.scopus.com/inward/record.url?scp=85137934802&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=85137934802&partnerID=8YFLogxK

U2 - 10.1016/j.jpeds.2022.08.005

DO - 10.1016/j.jpeds.2022.08.005

M3 - Article

C2 - 35970239

AN - SCOPUS:85137934802

SN - 0022-3476

VL - 251

SP - 156-163.e2

JO - journal of pediatrics

JF - journal of pediatrics

ER -

The Association of Health Literacy with Health-Related Quality of Life in Youth and Young Adults with Spina Bifida: A Cross-Sectional Study

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