Pediatric Nephrology

, Volume 33, Issue 10, pp 1759–1764 | Cite as

Parental health literacy and progression of chronic kidney disease in children

  • Ana C. Ricardo
  • Lynn N. Pereira
  • Aisha Betoko
  • Vivien Goh
  • Amatur Amarah
  • Bradley A. Warady
  • Marva Moxey-Mims
  • Susan Furth
  • James P. Lash
  • on behalf of the Chronic Kidney Disease in Children (CKiD) Cohort Investigators
Original Article



Limited health literacy has been associated with adverse outcomes in children. We evaluated this association in the setting of chronic kidney disease (CKD).


We assessed the parental health literacy of 367 children enrolled in the Chronic Kidney Disease in Children (CKiD) Study, using the Short Test of Functional Health Literacy (STOFHLA). We evaluated the association between parental health literacy and CKD progression, defined as time to the composite event of renal replacement therapy (RRT, dialysis, or kidney transplant) or 50% decline in estimated glomerular filtration rate (eGFR).


Median CKiD participant age was 9.5 years, 63% were male, and 59% non-Hispanic white. Median eGFR at baseline was 63 ml/min/1.73 m2, and median urine protein-to-creatinine ratio was 0.22. The median STOFHLA score was 98. Over a median follow-up of 3.7 years, the overall CKD progression rate was 2.8 per 100 person-years. After adjustment for demographic and clinical factors, the relative time to CKD progression was 28% longer per 1 SD increase in STOFHLA score (relative time, 95% CI, 1.28, 1.06–1.53).


In this cohort of children with CKD, higher parental health literacy was associated with a nearly 30% longer time to the composite CKD progression outcome.


Chronic kidney disease Health literacy Children 


Funding information

The CKiD Cohort Study was supported by the funding provided by the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), the Eunice Kennedy Shriver National Institute of Child Health and Human Development, and the National Heart, Lung, and Blood Institute (U01-DK-66143, U01-DK-66174, U01-DK-082194, U01-DK-66116). Dr. Ricardo is funded by the NIDDK K23-DK-094829 Award. Dr. Lash is funded by the NIDDK K24-DK-092290 Award.

Compliance with ethical standards

The study protocol was approved by the Institutional Review Boards at all participating sites and all participants gave written informed consent and/or assent.

Conflict of interest

The authors declare that they have no conflict of interest.


  1. 1.
    Chronic Kidney Disease (CKD) Surveillance Project. Accessed 4 Jan 2017
  2. 2.
    Read “Health literacy: a prescription to end confusion” at
  3. 3.
    America’s health literacy: why we need accessible health information. Accessed 4 Jan 2017
  4. 4.
    DeWalt DA, Hink A (2009) Health literacy and child health outcomes: a systematic review of the literature. Pediatrics 124(Suppl 3):S265–S274CrossRefPubMedGoogle Scholar
  5. 5.
    Furth SL, Cole SR, Moxey-Mims M, Kaskel F, Mak R, Schwartz G, Wong C, Muñoz A, Warady BA (2006) Design and methods of the chronic kidney disease in children (CKiD) prospective cohort study. Clin J Am Soc Nephrol 1:1006–1015CrossRefPubMedPubMedCentralGoogle Scholar
  6. 6.
    Furth SL, Abraham AG, Jerry-Fluker J, Schwartz GJ, Benfield M, Kaskel F, Wong C, Mak RH, Moxey-Mims M, Warady BA (2011) Metabolic abnormalities, cardiovascular disease risk factors, and GFR decline in children with chronic kidney disease. Clin J Am Soc Nephrol 6:2132–2140CrossRefPubMedPubMedCentralGoogle Scholar
  7. 7.
    Baker DW, Williams MV, Parker RM, Gazmararian JA, Nurss J (1999) Development of a brief test to measure functional health literacy. Patient Educ Couns 38:33–42CrossRefPubMedGoogle Scholar
  8. 8.
    Taylor WL (1953) Cloze procedures: a new tool for measuring readability. JMCQ 30:415–433Google Scholar
  9. 9.
    Gunning R (1968) The technique of clear writing. McGraw Hill, New YorkGoogle Scholar
  10. 10.
    Baker DW, Gazmararian JA, Williams MV, Scott T, Parker RM, Green D, Ren J, Peel J (2002) Functional health literacy and the risk of hospital admission among Medicare managed care enrollees. Am J Public Health 92:1278–1283CrossRefPubMedPubMedCentralGoogle Scholar
  11. 11.
    Parker RM, Baker DW, Williams MV, Nurss JR (1995) The test of functional health literacy in adults: a new instrument for measuring patients’ literacy skills. J Gen Intern Med 10:537–541CrossRefPubMedGoogle Scholar
  12. 12.
    Davis TC, Long SW, Jackson RH, Mayeaux EJ, George RB, Murphy PW, Crouch MA (1993) Rapid estimate of adult literacy in medicine: a shortened screening instrument. Fam Med 25:391–395PubMedGoogle Scholar
  13. 13.
    Baker DW (2006) The meaning and the measure of health literacy. J Gen Intern Med 21:878–883CrossRefPubMedPubMedCentralGoogle Scholar
  14. 14.
    Schwartz GJ, Muñoz A, Schneider MF, Mak RH, Kaskel F, Warady BA, Furth SL (2009) New equations to estimate GFR in children with CKD. J Am Soc Nephrol 20:629–637CrossRefPubMedPubMedCentralGoogle Scholar
  15. 15.
    Wong CS, Pierce CB, Cole SR, Warady BA, Mak RH, Benador NM, Kaskel F, Furth SL, Schwartz GJ, CKiD Investigators (2009) Association of proteinuria with race, cause of chronic kidney disease, and glomerular filtration rate in the chronic kidney disease in children study. Clin J Am Soc Nephrol 4:812–819CrossRefPubMedPubMedCentralGoogle Scholar
  16. 16.
    Rak EC, Hooper SR, Belsante MJ, Burnett O, Layton B, Tauer D, Mantoo B, DeWalt D, Ferris ME (2016) Caregiver word reading literacy and health outcomes among children treated in a pediatric nephrology practice. Clin Kidney J 9:510–515CrossRefPubMedPubMedCentralGoogle Scholar
  17. 17.
    Devraj R, Gordon EJ (2009) Health literacy and kidney disease: toward a new line of research. Am J Kidney Dis Off J Natl Kidney Found 53:884–889CrossRefGoogle Scholar
  18. 18.
    Macabasco-O’Connell A, DeWalt DA, Broucksou KA, Hawk V, Baker DW, Schillinger D, Ruo B, Bibbins-Domingo K, Holmes GM, Erman B, Weinberger M, Pignone M (2011) Relationship between literacy, knowledge, self-care behaviors, and heart failure-related quality of life among patients with heart failure. J Gen Intern Med 26:979–986CrossRefPubMedPubMedCentralGoogle Scholar
  19. 19.
    Kalichman SC, Pope H, White D, Cherry C, Amaral CM, Swetzes C, Flanagan J, Kalichman MO (2008) Association between health literacy and HIV treatment adherence: further evidence from objectively measured medication adherence. J Int Assoc Physicians AIDS Care Chic Ill 2002 7:317–323CrossRefGoogle Scholar
  20. 20.
    Wright Nunes JA, Wallston KA, Eden SK, Shintani AK, Ikizler TA, Cavanaugh KL (2011) Associations among perceived and objective disease knowledge and satisfaction with physician communication in patients with chronic kidney disease. Kidney Int 80:1344–1351CrossRefPubMedGoogle Scholar
  21. 21.
    Morrison AK, Myrvik MP, Brousseau DC, Hoffmann RG, Stanley RM (2013) The relationship between parent health literacy and pediatric emergency department utilization: a systematic review. Acad Pediatr 13:421–429CrossRefPubMedGoogle Scholar
  22. 22.
    Robinson LD, Calmes DP, Bazargan M (2008) The impact of literacy enhancement on asthma-related outcomes among underserved children. J Natl Med Assoc 100:892–896CrossRefPubMedGoogle Scholar
  23. 23.
    Kiser K, Jonas D, Warner Z, Scanlon K, Shilliday BB, DeWalt DA (2012) A randomized controlled trial of a literacy-sensitive self-management intervention for chronic obstructive pulmonary disease patients. J Gen Intern Med 27:190–195CrossRefPubMedGoogle Scholar
  24. 24.
    Baker DW, DeWalt DA, Schillinger D, Hawk V, Ruo B, Bibbins-Domingo K, Weinberger M, Macabasco-O'Connell A, Pignone M (2011) “Teach to goal”: theory and design principles of an intervention to improve heart failure self-management skills of patients with low health literacy. J Health Commun 16(Suppl 3):73–88CrossRefPubMedPubMedCentralGoogle Scholar
  25. 25.
    Kovesdy CP, Kalantar-Zadeh K (2012) Observational studies versus randomized controlled trials: avenues to causal inference in nephrology. Adv Chronic Kidney Dis 19:11–18CrossRefPubMedPubMedCentralGoogle Scholar

Copyright information

© IPNA 2018

Authors and Affiliations

  • Ana C. Ricardo
    • 1
  • Lynn N. Pereira
    • 2
  • Aisha Betoko
    • 2
  • Vivien Goh
    • 1
  • Amatur Amarah
    • 1
  • Bradley A. Warady
    • 3
  • Marva Moxey-Mims
    • 4
  • Susan Furth
    • 5
  • James P. Lash
    • 1
  • on behalf of the Chronic Kidney Disease in Children (CKiD) Cohort Investigators
  1. 1.Division of NephrologyUniversity of IllinoisChicagoUSA
  2. 2.Johns Hopkins Bloomberg School of Public HealthBaltimoreUSA
  3. 3.Children’s MercyKansas CityUSA
  4. 4.National Institute of Diabetes and Digestive and Kidney Diseases, National Institutes of HealthBethesdaUSA
  5. 5.Division of NephrologyChildren’s Hospital of PhiladelphiaPhiladelphiaUSA

Personalised recommendations