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Health literacy and caregiver understanding in the CHD population

Published online by Cambridge University Press:  04 August 2020

Megan E. Rodts Open the ORCID record for Megan E. Rodts [Opens in a new window] ,
Ndidi I. Unaka ,
Christopher J. Statile  and
Nicolas L. Madsen
Megan E. Rodts*
Affiliation:
Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
Ndidi I. Unaka
Affiliation:
Division of Hospital Medicine, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA Department of Pediatrics, University of Cincinnati College Of Medicine, Cincinnati, OH, USA
Christopher J. Statile
Affiliation:
Department of Pediatrics, University of Cincinnati College Of Medicine, Cincinnati, OH, USA The Heart Institute, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
Nicolas L. Madsen
Affiliation:
Department of Pediatrics, University of Cincinnati College Of Medicine, Cincinnati, OH, USA The Heart Institute, Cincinnati Children’s Hospital Medical Center, Cincinnati, OH, USA
*
Author for correspondence: M. E. Rodts, Department of Pediatrics, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Avenue MLC 5018, Cincinnati, OH45229, USA. Tel: +1 513 636 5476. E-mail: megan.rodts@cchmc.org
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Abstract

Background:

CHD is the most common birth defect type, with one-fourth of patients requiring intervention in the first year of life. Caregiver understanding of CHD may vary. Health literacy may be one factor contributing to this variability.

Methods:

The study occurred at a large, free-standing children’s hospital. Recruitment occurred at a free-of-charge CHD camp and during outpatient cardiology follow-up visits. The study team revised the CHD Guided Questions Tool from an eighth- to a sixth-grade reading level. Caregivers of children with CHD completed the “Newest Vital Sign” health literacy screen and demographic surveys. Health literacy was categorised as “high” (Newest Vital Sign score 4–6) or “low” (score 0–3). Caregivers were randomised to read either the original or revised Guided Questions Tool and completed a validated survey measuring understandability and actionability of the Guided Questions Tool. Understandability and actionability data analysis used two-sample t-testing, and within demographic group differences in these parameters were assessed via one-way analysis of variance.

Results:

Eighty-two caregivers participated who were largely well educated with a high income. The majority (79.3%) of participants scored “high” for health literacy. No differences in understanding (p = 0.43) or actionability (p = 0.11) of the original and revised Guided Questions Tool were noted. There were no socio-economic-based differences in understandability or actionability (p > 0.05). There was a trend towards improved understanding of the revised tool (p = 0.06).

Conclusions:

This study demonstrated that readability of the Guided Questions Tool could be improved. Future work is needed to expand the study population and further understand health literacy’s impact on the CHD community.

Keywords

Health literacyCHDpatient and family education
Type
Original Article
Information
Cardiology in the Young , Volume 30 , Issue 10 , October 2020 , pp. 1439 - 1444
Copyright
© The Author(s), 2020. Published by Cambridge University Press

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References

Centers for Disease Control and Prevention. Data and Statistics on Congenital Heart Defects. https://www.cdc.gov/ncbddd/heartdefects/data.html. Published 2018. Accessed March 13, 2019.Google Scholar
Nembhard, WN, Wang, T, Loscalzo, ML, Salemi, JL. Variation in the prevalence of congenital heart defects by maternal race/ethnicity and infant sex. J Pediatr 2010; 156: 259–264.CrossRefGoogle Scholar
Nembhard, WN, Pathak, EB, Schocken, DD. Racial/ethnic disparities in mortality related to congenital heart defects among children and adults in the United States. Ethn Dis 2008; 18: 442–449.Google ScholarPubMed
Nembhard, WN, Salemi, JL, Ethen, MK, Fixler, DE, Dimaggio, A, Canfield, MA. Racial/ethnic disparities in risk of early childhood mortality among children with congenital heart defects. Pediatrics 2011; 127: e1128–e1138.CrossRefGoogle ScholarPubMed
US Dept of Health and Human Services. Health Communication and Health Information Technology. https://www.healthypeople.gov/node/3508/objectives#4512. Published 2019. Accessed November 2, 2019.Google Scholar
Nielsen-Bohlman, L, Panzer, AM, Kindig, DA, Committee on Health Literacy, Board on Neuroscience and Behavioral Health, Institute of Medicine, eds. Health Literacy : A Prescription to End Confusion. Washington, DC: National Academies Press; 2004.CrossRefGoogle Scholar
Aaronson, NL, Joshua, CL, Boss, EF. Health literacy in pediatric otolaryngology: a scoping review. Int J Pediatr Otorhinolaryngol 2018; 113: 252–259.CrossRefGoogle ScholarPubMed
Imoisili, OE, Levinsohn, E, Pan, C, Howell, BA, Streiter, S, Rosenbaum, JR. Discrepancy between patient health literacy levels and readability of patient education materials from an electronic health record. Health Lit Res Pract 2017; 1: e203–e207.Google ScholarPubMed
John, AM, John, ES, Hansberry, DR, Thomas, PJ, Guo, S. Analysis of online patient education materials in pediatric ophthalmology. J AAPOS 2015; 19: 430–434.CrossRefGoogle ScholarPubMed
Rudd, RE, Moeykens, BA, Colton, TC. Health and literacy. A review of medical and public health literature. In: Comings, J, Garners, B, Smith, C (eds). Annual Review of Adult Learning and Literacy. Jossey-Bass, New York, 2000.Google Scholar
Taylor, S, Guirguis, M, Raney, EM. Can patients and families read the questionnaires for patient-related outcome measures? J Pediatr Orthop 2019; 39: e397–e401.CrossRefGoogle ScholarPubMed
Weiss, BD, Mays, MZ, Martz, W, et al. Quick assessment of literacy in primary care: The newest vital sign. Ann Fam Med 2005; 3: 514–522.CrossRefGoogle ScholarPubMed
Ratzan, SC, Parker, RM. Introduction. In: Selden, CR, Zorn, M, Ratzan, SC, Parker, RM (eds). National Library of Medicine Current Cibliographies in Medicine: Health Literacy. National Institutes of Health, US Dept of Health and Human Services, Bethesda, MD, 2000.Google Scholar
Penny, DJ. Speaking to children and their families about congenital heart disease: Ushering in a new era of healthcare literacy. Congenit Heart Dis 2017; 12: 241.CrossRefGoogle Scholar
Basken, A. Guided questions tool. https://www.conqueringchd.org/guided-questions-tool/2016. Published 2016. Accessed March 25, 2019.Google Scholar
Fry, E. A readability formula that saves time. J Read 1968; 11: 513–516, 575–578.Google Scholar
Centers for Disease Control and Prevention. Simply put: A guide for creating easy-to-understand materials. https://www.cdc.gov/healthliteracy/pdf/simply_put.pdf. Published 2010. Accessed March 26, 2019.Google Scholar
Agency for Healthcare Research and Quality. Health Literacy Universal Precautions Toolkit, 2nd Edition. https://www.ahrq.gov/health-literacy/quality-resources/tools/literacy-toolkit/healthlittoolkit2-tool11.html. Published 2013. Accessed March 26, 2019.Google Scholar
Center for Medicare and Medicaid Services. Toolkit for Making Written Material Clear and Effective, SECTION 2: Detailed guidelines for writing and design. https://www.cms.gov/Outreach-and-Education/Outreach/WrittenMaterialsToolkit. Published 2012. Accessed March 26, 2019.Google Scholar
Camp Joy. https://camp-joy.org. Published 2019. Accessed December 12, 2019.Google Scholar
Agency for Healthcare Research and Quality. PEMAT for Printable Materials (PEMAT-P). http://www.ahrq.gov/sites/default/files/publications/files/pemat-p.pdf. Published 2013. Accessed April 3, 2019.Google Scholar
Agency for Healthcare Research and Quality. The Patient Education Materials Assessment Tool (PEMAT) and User’s Guide: Introduction. https://www.ahrq.gov/ncepcr/tools/self-mgmt/pemat1.html. Published 2013. Accessed April 3, 2019.Google Scholar
Robinson, LD, Calmes, DP, Bazargan, M. The impact of literacy enhancement on asthma-related outcomes among underserved children. J Natl Med Assoc 2008; 100: 892–896.CrossRefGoogle ScholarPubMed
DeWalt, DA, Dilling, MH, Rosenthal, MS, Pignone, MP. Low parental literacy is associated with worse asthma care measures in children. Ambul Pediatr 2007; 7: 25–31.CrossRefGoogle ScholarPubMed
Yin, HS, Mendelsohn, AL, Wolf, MS, et al. Parents’ medication administration errors: Role of dosing instruments and health literacy. Arch Pediatr Adolesc Med 2010; 164: 181–186.CrossRefGoogle ScholarPubMed
Yin, HS, Johnson, M, Mendelsohn, AL, Abrams, MA, Sanders, LM, Dreyer, BP. The health literacy of parents in the United States: a nationally representative study. Pediatrics 2009; 124: S289–S298.CrossRefGoogle ScholarPubMed
Sudore, RL, Yaffe, K, Satterfield, S, et al. Limited literacy and mortality in the elderly: The health, aging, and body composition study. J Gen Intern Med 2006; 21: 806–812.CrossRefGoogle ScholarPubMed
Kutner, MA, Greenberg, E, Jin, Y, Paulsen, C. The Health Literacy of America’s Adults: Results From the 2003 National Assessment of Adult Literacy. US Dept of Education, Natiounal Center for Education Statistics, Washington, DC, 2006.Google Scholar
Smedley, BD, Stith, AY, Nelson, AR, Institute of Medicine Committee on Understanding and Eliminating Racial and Ethnic Disparities in Health Care. Unequal Treatment : Confronting Racial and Ethnic Disparities in Health Care. National Academies Press, Washington, DC, 2003.Google Scholar
Chan, T, Pinto, NM, Bratton, SL. Racial and insurance disparities in hospital mortality for children undergoing congenital heart surgery. Pediatr Cardiol 2012; 33: 1026–1039.CrossRefGoogle ScholarPubMed
Oster, ME, Strickland, MJ, Mahle, WT. Racial and ethnic disparities in post-operative mortality following congenital heart surgery. J Pediatr 2011; 159: 222–226.CrossRefGoogle ScholarPubMed
United States Census Bureau. Quick Facts. www.census.gov/quickfacts. Published 2018. Accessed April 15, 2020.Google Scholar