Rosemary Frasso's presentation from the Penn Urban Doctoral Symposium May 13, 2011 Co-sponsored with Penn’s Urban Studies program, this symposium celebrates the work of graduating urban-focused doctoral candidates. Graduates present and discuss their dissertation findings. Luncheon attended by the students, their families and their committees follows.

1. Exploring the Association between Maternal Health Literacy and Pediatric Healthcare Utilization:Is Low Health Literacy a Barrier of Concern? Rosemary Frasso Dissertation Committee Chair ~ Phyllis Solomon, PhD Steve Marcus PhD Ian Bennett, MD, PhD Agency for Healthcare Research and Quality Dissertation Grant 1 R36 HS017471-01

2. Agenda Background and Significance Methods Results Discussion Limitations and Lessons Learned Next Steps 2

3. Background Health Literacy (HL) “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” DHHS, 2000 3

4. Background We know Women with low health literacy have poor health outcomes and underutilize preventive care 4

5. Background We know Appropriate use of pediatric preventive care is associated with significant reductions in morbidity and mortality and has been shown to reduce healthcare costs and decrease hospital admissions 5

6. Significance We don’t know Are children of mothers with low health literacy at a disadvantage similar to that of their mothers? Conflicting evidence about the impact of maternal HL on pediatric social and health outcomes Pati et al (2011) -TANF/Vaccination compliance 6

7. Methods Mix methods Quantitative (secondary data analysis) Qualitative 14 semi-structured interviews 11 different mothers with varied HL 1 critical case exploration MOTHERS FROM THE PARENT STUDY (REALM) CHILDREN FROM THE MEDICAID CLAIM DATA 185 DYADS 7

8. Parent Study Community based prospective cohort study of mothers and infants in Philadelphia Investigating the contextual, social, behavioral, and family context of maternal child health (extensive surveys) Followed from prenatal period to 24 months post partum >5000 participants 1034 had health literacy assessments REALM / STOFHLA Funded by the CDC and National Institute of Child Health and Development 8 CDC (TS 312 15/15; Culhane) and NICHD (1R01 D36462 01A; Elo and Culhane)

9. Operationalized Independent Variables Predisposing Enabling Need 9 Demographic characteristics, such as race, age, and maternal education have been shown to impact parent driven pediatric health service use Here Andersen grouped personal and family factors including social supports, income, insurance & physical access to providers Need, the strongest predictor of health service use based on how people view their own functional capacity, symptoms, & general state of health (and that of the children they care for)

10. Dependent Variables Operationalized 10 The primary outcome measure of preventive care utilization is the overall number of documented well-child visits in the first two years of life The AAP recommends 7 WCV in year 1 of life and 3 in year 2 of life ED. SCV, % Compliance CPT and ICD-9 Codes were used to identify these visits in the Medicaid claims files Well- Child Visits Year 1 /Year 2 (WCV) Sick - Child Visits Year 1 /Year 2 (SCV) ED Visits Year 1 /Year 2 (EDV) % Compliant Year 1 /Year 2 (WCV) AAP, 2011

11. Andersen’s Model Modified 3 1 2 4 11

12. Maternal Health Literacy and Outcomes of Interest Year 1 of Life 12

13. Quantitative Analysis Revealed HL was not associated with the number of well-child visits, sick-child visits, ED visits or % compliance with a minimum number of visits in year 1 and year 2 of life HL did not prove to mediate or moderate the relationships between any of predisposing and enabling factors under study and our outcomes of interest Higher health literacy was not protective in this population 13

14. Frequency Distribution Well-Child Visits Year 1 14 AAP Recommends 7 82% of US children in this age group are meeting this guideline

15. Frequency Distribution Well-Child Visits Year 2 15 AAP Recommends 3 WCV

16. Qualitative Analysis Revealed Women with low HL and women higher HL encountered an overlapping set of challenges when navigating the healthcare system Several themes emerged and were used to elaborate on Andersen’s Model and shed light on the quantitative findings and a critical case emerged 16

19. Availability/Convenience

20. Time in community /strength of ties Social support Literacy Strategies for working around low literacy Access to sources of health information Internet Access to information Communication Having an advocate Continuity of care Prior satisfaction with a healthcare provider Disabling Factors Power imbalance Lack of an advocate Limited or no access to health information Administrative/logistic hassles † Work gets in the way (unemployment) 17

21. Thank You 18

22. Special Thanks To Phyllis Solomon, PhD Steven Marcus, PhD Ian Bennett, MD, PhD Leny Mathew, MS Jennifer Culhane, PhD, MPH All the members of Dr. Culhane’s Paper Group Sara Cullen, MSW And of course my terrific kids for all their love, patience and support 19

23. Some References (others available upon request) Agency for Healthcare Research and Quality. (2011, March 28). Low Health Literacy Linked to Higher Risk of Death and More Emergency Room Visits and Hospitalizations. Retrieved from http://www.ahrq.gov/news/press/pr2011/lowhlitpr.htm Andersen, R. M. (1995). Revisiting the behavioral model and access to medical care: Does it matter? J Health Soc Behav, 36(1), 1-10. Baron, R. M., & Kenny, D. A. (1986). The moderator-mediator variable distinction in social psychological research: Conceptual Berkman, N. D., Dewalt, D. A., Pignone, M. P., Sheridan, S. L., Lohr, K. N., Lux, L., Bonito, A. J. (2004). Literacy and health outcomes. Evid Rep Technol Assess (Summ), (87), 1-8. American Academy of Pediatrics, Committee on Practice and Ambulatory Medicine. (2000). Recommedations for preventive pediatric health care. Hakim, R. B., & Bye, B. V. (2001). Effectiveness of compliance with pediatric preventive care guidelines among Medicaid beneficiaries. Pediatrics, 108(1), 90-97. Shulman, S. (2006). Poor preventive care achievement and program retention among low birth weight infant Medicaid enrollees. Pediatrics, 118(5), e1509-1515. doi: peds.2004-0489 [pii] 10.1542/peds.2004-0489 20

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26. Measuring Health Literacy Rapid Assessment of Adult Literacy in Medicine REALM 66 items Word familiarity Approximately three minutes Short Test of Functional Health Literacy in Adults STOFHLA 36 items Functional health literacy Approximately 7 minutes 23 (Baker, Williams, Parker, Gazmararian, & Nurss, 1999; Davis, Bocchini, et al., 1996; Davis, et al., 1993; Davis, et al., 1994; Moon, et al., 1998)

27. A Critical Case Emerges 24

28. Missed Opportunities “Yes, but I, but I’m like, OK, it prevents cancer, is there any side effects from it, he’s like no, no, it’s in the pamphlet and I’m like, I see that, I understand that, I understand it was on paper, but it’s different when you hear it from someone. And I just wish he would’ve had more of a conversation about it, ‘cause it was like, no, I, everybody’s getting it, and I’m like OK?” Note: This participant declined the HPV vaccine for her daughter, who she generally relies on to translate written materials. 25

29. Benefit of Mix Methods New Concepts Lay informants Pseudo experts Experts Confirmation Parity Employment Unexpected findings (dyslexia example) “I don’t take advice from family or friends as much as I would a doctor” “I would call the hospital…... I got reprimanded for calling” “My cousin is in nursing school” “Friends, but their kids are younger so they don’t know” 26

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33. REALM Grade Equivalent Scores 30

34. Dependent Variables Operationalized We also documented the percent of dyads that were compliant with a minimum number of WCV per year There is a precedent in the literature for setting this bench-mark at 4 for year 1 and 2 for year 2 of life, slightly lower than the AAP recommendations CPT and ICD-9 Codes were used to identify these visits in the Medicaid claims files Compliant Year 1 (WCV) Compliant Year 2 (WCV) Shulmen, 2006 31

35. Hypotheses Mothers with low health literacy (< 6th grade) will be less likely than mothers with marginal to higher health literacy (> 7th grade) to meet pediatric preventive care recommendations. 32

36. Hypotheses Children of mothers with low health literacy (< 6th grade) will be more likely than children of mothers with marginal to high health literacy (> 7th grade) to visit an emergency room. be seen by a provider for a sick-child visit. 33

37. Hypotheses Low maternal health literacy will mediate the relationship between negative predisposing and enabling factors and timely receipt of pediatric preventive care. pediatric emergency room visits. the number of sick-child visits. 34

38. Hypotheses Low maternal health literacy will moderate the relationship between negative predisposing and enabling factors and timely receipt of pediatric preventive care. pediatric emergency room visits. the number of sick-child visits. 35

39. Quantitative Analysis Categorical Variable Chi-squared test of independence Continuous Variables Wilcoxon rank-sum test (Mann-Whitney-Wilcoxon) or Kruskal-Wallis non-parametric test Linear Regression Moderation Analysis Mediation Analysis Likelihood ratio test STATA Data Analysis Statistical Software 36

40. Qualitative Methods In depth semi structured interviews Issues of interest Need factors / perceived need Health beliefs Social support/relationships Ability to navigate the healthcare system Transcribed verbatim Coded using NVIVO8 (QSR) software guided by Andersen’s model 37

41. Guiding Qualitative Hypotheses Qualitative interviews will show that mothers with low health literacy will report different issues related to access to preventive pediatric care than mothers with marginal to high health literacy. Additionally, they will perceive different barriers to care and will suggest different interventions to reduce these barriers. 38

43. 5% White

44. 8% Latina

45. 89% Born in the US

46. All inner-city

47. > 19 years of age

48. 84% completed HS

50. February 2000 -October 2002

51. Income (75% <$11,610/yr)

52. Children had >10 months of …Medicaid eligibility/yr

53. 14% low HL39 Non English Speakers (ESL OK) N=27

54. Results 40

55. Andersen’s Model Modified 3 1 2 4 41

56. Pathway 1 Percent of Participants in Education Group by Health Literacy Level REALM Percent of Participants in Each Age Group by Health Literacy Level Maternal Education REALM Maternal Age 42

58. Race

59. Nativity

60. Age

61. Education

62. First Language

63. Marital Status

64. Parity

65. Enabling

66. Income

67. Number of people supported by income

68. Any other financial support

69. SSI and Unemployment /WMC

70. Money left over at the end of the month

71. Worried about Money

72. Insurance 43

74. Race

75. Age

76. Marital Status

77. Parity

78. Enabling

79. SSI and Unemployment /WMC

80. Insurance

81. Predisposing

82. Race

83. Nativity

84. Age

85. Education

86. First Language

87. Marital Status

88. Parity

89. Enabling

90. Income

91. Number of people supported by income

92. Any other financial support

93. SSI and Unemployment /WMC

94. Money left over at the end of the month

95. Worried about Money

96. Insurance 44

97. Statistically Significant Associations Parity median (range) / p –value < 0.05* -WCV YR 1 / 0.02* 1 child 4 (0-7) 2+ children 3 (0-10) -SCV YR 2 / 0.01* 1 child 1 (0-9) 2+ children 0 (0-6) -ED Visits 1 / 0.01* 1 child 1 (0-13) 2+ children 0 (0-8) -ED Visits 1 / 0.01* 1 child 1 (0-13) 2+ children 0 (0-8) 45

104. Statistically Significant Associations % Compliant Year 2 Education (P-value 0.02*) Post HS 70% > 2 visits year 2 HS or GED 50% > 2 visits year 2 < HS 37% > 2 visits year 2 Maternal Insurance Status (P-value 0.02*) Private 41% > 2 visits year 2 Medicaid 29% > 2 visits year 2 Uninsured 63% > 2 visits year 2 52

105. Pathway 3 and Mediation Maternal Health Literacy Mediator

106. Controlling for the REALM ~ Likelihood Ratio Tests 54 1.49 (0.48) 0.51 (0.76) 1.77 (0.41) 0.29 (0.87) 1.09 (0.58) 1.02 (0.60) 1.89 (0.39) 1.65 (0.44) 0.39 (0.82) 0.33 (0.85) 0.56 (0.76)

107. Pathway 4Moderation 55 Parity Well-Child Care Sick-Child CareED Visits % Compliance (Minimum # of visits/year) REALM (categorical) Parity X REALM Planned Analysis Barron & Kenny, 1986

108. Quantitative Analysis Revealed HL was not associated with the number of well-child visits, sick-child visits, ED visits or % compliance with a minimum number of visits in year 1 and year 2 of life When we controlled for health literacy we saw no impact on establish associations between a set of independent variables and our outcome variables 56

109. Associations of Interest 66% of the women in our sample had completed high school or GED however only 50% had a REALM score > 9th grade 100% of the women in the highest HL group were born in the US while that was the case for only 80% of the women in the low HL group 57

110. Qualitative Analysis Revealed Women with low HL and women higher HL encountered an overlapping set of challenges when navigating the healthcare system Confirmed the quantitative findings (for the most part kids are getting the minimum number of visits) Several themes emerged and were used to elaborate on Andersen’s Model and shed light on the quantitative findings Critical case emerged 58

111. Need Factors Views & evaluation of the child’s functional capacity, symptoms, & general state of health Informed by health beliefs, values about health and illness & attitudes towards about health services and knowledge about health Personal /Family Resources Income People @ home Financial Support Employment Insurance Community Resources Demographics Race/Ethnicity Nativity Age Education Literacy Language Housing Social Structure Marital Status Parity 59 Discussion

114. Availability/Convenience

115. Time in community /strength of ties .Social support Literacy Strategies for working around low literacy Access to sources of health information Internet Access to information Communication Having an advocate Continuity of care Prior satisfaction with a healthcare provider Disabling Factors Power imbalance Lack of an advocate Limited or no access to health information Administrative/logistic hassles † Work gets in the way (unemployment) 60

116. Benefit of Mix Methods New Concepts Lay informants Pseudo experts Experts Confirmation Parity Employment Unexpected findings (dyslexia example) “I don’t take advice from family or friends as much as I would a doctor” “I would call the hospital…... I got reprimanded for calling” “My cousin is in nursing school” “Friends, but their kids are younger so they don’t know” 61

119. Availability/Convenience

120. Time in community /strength of ties .Social support Literacy Strategies for working around low literacy Access to sources of health information Internet Access to information Communication Having an advocate Continuity of care Prior satisfaction with a healthcare provider Disabling Factors Power imbalance Lack of an advocate Limited or no access to health information Administrative/logistic hassles † Work gets in the way (unemployment) 62

121. A Critical Case Emerges 63

124. Availability/Convenience

125. Time in community /strength of ties Social support Literacy Strategies for working around low literacy Access to sources of health information Internet Access to information Communication Having an advocate Continuity of care Prior satisfaction with a healthcare provider Disabling Factors Power imbalance Lack of an advocate Limited or no access to health information Administrative/logistic hassles † Work gets in the way (unemployment) 64

126. Missed Opportunities “Yes, but I, but I’m like, OK, it prevents cancer, is there any side effects from it, he’s like no, no, it’s in the pamphlet and I’m like, I see that, I understand that, I understand it was on paper, but it’s different when you hear it from someone. And I just wish he would’ve had more of a conversation about it, ‘cause it was like, no, I, everybody’s getting it, and I’m like OK?” Note: This participant declined the HPV vaccine for her daughter, who she generally relies on to translate written materials. 65

127. Health Literacy 50% of the group was compliant in year 1 and this did not vary by health literacy 44% of the group was compliant in year 2 and again no variation by health literacy Does health literacy matter in this population? 66

128. Limitations & Lessons Learned Sample size / power Inclusion criteria 10 month of eligibility Locating the poorest readers REALM Was it reliable in the population? Does it need to be validated in the context of LD? Did not take full advantage of the available data* Limited generalizability and transferability 67

129. Next Steps Augment the current analysis and submit a paper for publication Abstract has been sent to APHA Critical Case was presented at Health Literacy Annual Research Conference Need to further explore how a learning disability impacts health literacy 68

130. Next Steps Continued Now that the dyads have been established we plan to revisit the survey data in order to explore additional research questions (many of which were brought to light in the qualitative arm of the study) For example: Feeling respected by a provider (qualitative) Mastery Scale and Coping Questions (parent study) “Sometimes I feel that I am being pushed around in life” “There is little I can do to change many of the important things in life” For example: Depression/mental illness (qualitative) Depression (parent study) 69

131. Some References (others available upon request) Agency for Healthcare Research and Quality. (2011, March 28). Low Health Literacy Linked to Higher Risk of Death and More Emergency Room Visits and Hospitalizations. Retrieved from http://www.ahrq.gov/news/press/pr2011/lowhlitpr.htm Andersen, R. M. (1995). Revisiting the behavioral model and access to medical care: Does it matter? J Health Soc Behav, 36(1), 1-10. Baron, R. M., & Kenny, D. A. (1986). The moderator-mediator variable distinction in social psychological research: Conceptual Berkman, N. D., Dewalt, D. A., Pignone, M. P., Sheridan, S. L., Lohr, K. N., Lux, L., Bonito, A. J. (2004). Literacy and health outcomes. Evid Rep Technol Assess (Summ), (87), 1-8. American Academy of Pediatrics, Committee on Practice and Ambulatory Medicine. (2000). Recommedations for preventive pediatric health care. Hakim, R. B., & Bye, B. V. (2001). Effectiveness of compliance with pediatric preventive care guidelines among Medicaid beneficiaries. Pediatrics, 108(1), 90-97. Shulman, S. (2006). Poor preventive care achievement and program retention among low birth weight infant Medicaid enrollees. Pediatrics, 118(5), e1509-1515. doi: peds.2004-0489 [pii] 10.1542/peds.2004-0489 70

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