Exploring the Association between Maternal Health Literacy and Pediatric Healthcare Utilization

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

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

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

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

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

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

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

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)

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)

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

Andersen’s Model Modified
3
1
2
4
11

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

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

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

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

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

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 (trust, respect†) and knowledge about health (literacy, access to information in order to appreciate need††).

† Feeling respected by the provider and healthcare staff
† Your opinion about your child’s health matters
†† e.g. knowing when and what vaccinations a child needs
Sources of information
(lay, pseudo experts, experts)

Compromises Ability to Assess Need
Low Literacy
Low Health Literacy
Competing demands
Lack of trust for the health care system or individual providers
Demographics
Race/Ethnicity
Nativity *
Age
Education *
Literacy
Health literacy
Ability to function w/o reading
Language
Housing
Social Structure
Marital Status
Parity*
Few competing demands
Compromising Factors
Low literacy
Low health literacy
Learning disabilities
Dyslexia
No coping strategy for dealing with literacy barriers
Parity high – too many competing demands
Mental Illness
Personal /Family Resources
Income
People @ home
Financial Support
Employment *†
Insurance
Community Resources
Physical access to care
Availability/Convenience
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

Thank You
18

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

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

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)

A Critical Case Emerges
24

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

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

REALM Grade Equivalent Scores
30

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

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

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

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

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

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

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

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

The Analytic Sample
Quantitative
84% African American
5% White
8% Latina
89% Born in the US
All inner-city
> 19 years of age
84% completed HS
Enrollment 1st prenatal
visit (14.8 ± 0.2 weeks)
PH Centers in Philadelphia
February 2000 -October 2002
Income (75% <$11,610/yr)
Children had >10 months of …Medicaid eligibility/yr
14% low HL
39
Non English Speakers (ESL OK)
N=27

Results
40

Andersen’s Model Modified
3
1
2
4
41

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

Pathway 2
Predisposing
Race
Nativity
Age
Education
First Language
Marital Status
Parity
Enabling
Income
Number of people supported by income
Any other financial support
SSI and Unemployment /WMC
Money left over at the end of the month
Worried about Money
Insurance
43

Statistically Significant Associations
Predisposing
Race
Age
Marital Status
Parity
Enabling
Insurance
Predisposing
Race
Nativity
Age
Education
First Language
Marital Status
Parity
Enabling
Income
Number of people supported by income
Any other financial support
Money left over at the end of the month
Worried about Money
Insurance
44

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

Race
ED visits YR 1/ 0.001*
Non Hispanic Whites 0.5 (0 – 5)
Latina 3 (0-8)
Non Hispanic Black 1 (1 -13)
Other 0 (0 -0)
46

Age
< 20 2 (0 -13)
20-<25 1 (0 -10)
25-<30 0.5 (0 -6)
> 30 1 (0 – 8)
47

Language
Eng (yes) 1 (0-13)
Eng (no) 3 (0-8)
Married
M (yes) 1 (0-7)
M (no) 3 (0-13)
48

Unemployment/Workman’s Comp
WCV YR 2 / 0.04*
Received(yes) 2.5 (1-4)
Received(no) 1 (0-9)
SCV YR 1 / 0.02*
M (yes) 1.5 (1-4)
M (no) 0 (0-9)
49

Mothers Insurance
Status @ Enrollment
WCV YR 2 / 0.01*
Private 1 (0-3)
Medicaid 1 (0-5)
Uninsured 2 (0-9)
50

Language
Compliant YR 2/ 0.05*
Eng (yes) 1 (0-13)
Eng (no) 3 (0-8)
Married
M (yes) 1 (0-7)
M (no) 3 (0-13)
51

% 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

Pathway 3 and Mediation
Maternal Health Literacy
Mediator

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)

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

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

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

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

Need Factors

Informed by health beliefs, values about health and illness & attitudes towards about health services and knowledge about health
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

Need Factors



Low Literacy
Low Health Literacy
Competing demands
Demographics
Race/Ethnicity
Nativity *
Age
Education *
Literacy
Health literacy
Language
Housing
Social Structure
Marital Status
Parity*
Low literacy
Low health literacy
Dyslexia
No coping strategy for dealing with .. literacy barriers
Parity high
too many competing demands
Mental Illness
* IV in the quantitative analysis and a theme in the qualitative analysis
Income
People @ home
Financial Support
Employment *†
Insurance
Community Resources
.Social support

Literacy
Internet
Communication
Having an advocate
Continuity of care

Disabling Factors
Power imbalance
Lack of an advocate
60

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

Need Factors



Low Literacy
Low Health Literacy
Competing demands
Demographics
Race/Ethnicity
Nativity *
Age
Education *
Literacy
Health literacy
Language
Housing
Social Structure
Marital Status
Parity*
Low literacy
Low health literacy
Dyslexia
No coping strategy for dealing with .. literacy barriers
Parity high
too many competing demands
Mental Illness
Income
People @ home
Financial Support
Employment *†
Insurance
Community Resources
.Social support

Literacy
Internet
Communication
Having an advocate
Continuity of care

Disabling Factors
Power imbalance
Lack of an advocate
62

A Critical Case Emerges
63

Need Factors



Low Literacy
Low Health Literacy
Competing demands
Demographics
Race/Ethnicity
Nativity *
Age
Education *
Literacy
Health literacy
Language
Housing
Social Structure
Marital Status
Parity*
Low literacy
Low health literacy
Dyslexia
No coping strategy for dealing with literacy barriers
Parity high – too many competing demands
Mental Illness
Income
People @ home
Financial Support
Employment *†
Insurance
Community Resources
Social support

Literacy
Internet
Communication
Having an advocate
Continuity of care

Disabling Factors
Power imbalance
Lack of an advocate
64

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

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

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

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

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

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

Exploring the Association between Maternal Health Literacy and Pediatric Healthcare Utilization

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