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Abstract
Objective: We examined the relationship between patient literacy level and self-reported HIV medication adherence, while estimating the
mediating roles of treatment knowledge and self-efficacy on this relationship.
Methods: Structured patient interviews with a literacy assessment, supplemented by medical chart review, were conducted among 204
consecutive patients receiving care at infectious disease clinics in Shreveport, Louisiana and Chicago, Illinois. Literacy was measured using
the Rapid Estimate of Adult Literacy in Medicine (REALM), while the Patient Medication Adherence Questionnaire (PMAQ) was used to
assess medication self-efficacy and adherence to antiretroviral regimens in the past 4 days.
Results: Approximately one-third of patients (30.4%) were less than 100% adherent to their regimen, and 31.4% had marginal to low literacy
skills. In multivariate analyses, low literate patients were 3.3 times more likely to be non-adherent to their antiretroviral regimen ( p < 0.001).
Patients’ self-efficacy, but not knowledge, mediated the impact of low literacy on medication adherence (AOR 7.4, 95% CI 2.7–12.5).
Conclusion: While low literacy was a significant risk factor for improper adherence to HIV medication regimens in our study, self-efficacy
mediated this relationship.
Practice implications: Comprehensive intervention strategies that go beyond knowledge transfer may be needed to address self-efficacy
among patients across all literacy levels to be successful in the management of difficult medication schedules.
# 2006 Published by Elsevier Ireland Ltd.
doses in this time period, while those acknowledging one or 61–66) readers, the information provided by the REALM is
more missed doses were considered non-adherent. generally sufficient. The REALM is highly correlated with
standardized reading tests and the Test of Functional Health
2.2.2. Treatment knowledge Literacy in Adults (TOFHLA) [28,29].
An HIV treatment knowledge score was derived through a
series of five open-ended questions that asked patients to (1) 2.3. Statistical analysis
provide a working definition for CD4 lymphocyte count, (2) a
working definition for viral load, (3) demonstrate an under- Chi-square and student’s t-tests were used to evaluate the
standing of a CD4 lymphocyte count by stating whether the association between patient literacy, demographic (age,
value should go up or down, (4) demonstrate an understanding gender, race, insurance coverage, employment, monthly
of viral load by stating whether the value should go up or down, income, site) and clinical (number of HIV and non-HIV
and (5) correctly identify all medications in their current medications currently taken, comorbidity, treatment in past
regimen using pages containing names and color photographs 6 months for mental illness or illicit drug use) character-
of all common HIV medications. A Board certified Infectious istics, treatment knowledge, medication self-efficacy, and
Disease physician blinded to patient characteristics and other self-reported adherence to HAART regimens (100%
questionnaire results classified CD4 count and viral load adherence versus <100% adherence, past 4 days). Patient
knowledge as correct if the patient could provide a relevant literacy was classified either as low (6th grade and below),
description of the terms and the desired goals of treatment. marginal (7th–8th grade) or adequate (9th grade and higher).
Patient knowledge of HIV medications was coded as correct if Multivariate logistic regression models were used to
they identified all medications, or incorrect if they identified estimate the independent relationship between low literacy
the wrong medications or did not report all medications in their and the outcomes of HIV treatment knowledge, medication
HAART regimen. For this study, patients were scored as self-efficacy, and medication adherence while controlling
having high knowledge if they responded to all five items for potential confounding variables (age, gender, race, site)
correctly, moderate knowledge if they answered correctly to and risk factors (number of HIV medications in regimen,
three to four items, and low knowledge if they appropriately other medications taken, comorbidity, history of mental
responded to fewer than three of the five items. illness and/or illicit drug use).
79.9% were male. More than half of respondents (55.9%) illicit drug use in the past 6 months. Significant differences
were unemployed, 39.7% had a household income less than in demographic and clinical characteristics were noted
$800/month, and 27.5% did not carry any health insurance. across literacy levels, and are shown in Table 1. In particular,
Over 60% of patients reported at least some college respondents with limited literacy were more likely to be
education. Approximately one-third of patients had limited African-American, male, lower educated, employed but
literacy skills; 11.3% were reading at or below a 6th grade uninsured, and to be from the Shreveport site.
level (low literacy) and 20.1% were reading at a 7th–8th
grade level (marginal literacy). More than half (52.5%) of all 3.2. Self-efficacy, knowledge, and adherence
patients were also receiving treatment for a non-HIV related
chronic illness. Nearly one-third reported receiving mental Over 70% of the patients were taking 3 or more
health services and 9.3% received treatment for alcohol or antiretroviral medications in addition to a mean of 3
Table 1
Characteristics of sample, stratified by literacy level
Variable Literacy level p-Value
Adequate (n = 140) Marginal (n = 41) Low (n = 23)
Age 0.91
<40 57.9 63.4 56.5
40–50 29.3 26.8 26.1
>50 12.8 9.8 17.4
Gender 0.03
Male 78.3 65.9 84.3
Race <0.001
African-American 31.4 68.3 86.9
Education <0.001
<High school 5.7 22.0 34.8
High school graduate 17.9 43.9 43.5
>High school 76.4 34.1 21.7
Monthly income 0.06
<$800 33.6 43.9 69.6
$800–999 24.3 24.4 13.0
$1000–1500 11.4 9.8 0.0
>$1500 30.7 21.9 17.4
Employment <0.001
Unemployed 73.9 56.1 52.9
Employed, part-time 13.0 17.1 15.0
Employed, full-time 13.1 26.8 32.1
Insurance <0.001
Private 33.6 21.9 0.0
Medicare 20.0 22.0 13.0
Medicaid/free care 46.4 56.1 87.0
Site 0.02
Shreveport 50.7 43.9 78.3
Chicago 49.3 56.1 21.7
HIV Treatment Knowledge Score <0.001
Low 17.1 48.8 78.3
Moderate 33.6 34.1 8.7
High 49.3 17.1 13.0
HIV Medication Self-efficacy Score <0.001
Low 24.3 19.5 60.9
Moderate 43.6 39.0 30.4
High 32.1 41.5 8.7
Number of HIV medications in regimen 0.17
1–2 25.9 35.5 45.0
3 or more 74.1 64.5 55.0
Medication adherence, past 4 days 0.01
100% adherence 70.0 80.5 47.8
M.S. Wolf et al. / Patient Education and Counseling 65 (2007) 253–260 257
Table 2
Adjusted Odds Ratios (OR) for low HIV treatment knowledge and medication self-efficacy by literacy levela
Outcome Literacy level
Adequate (n = 140) Marginal (n = 41) Low (n = 23)
Low HIV treatment knowledge (%) 17.1 48.8 78.3
Crude OR (95% CI) 1.0 1.7 (0.5–6.3) 2.3 (1.1–5.6)
Adjusted OR (95% CI) 1.0 1.5 (0.4–7.0) 2.4 (2.2–2.6)
Low HIV medication self-efficacy (%) 24.3 19.5 60.9
Crude OR (95% CI) 1.0 0.8 (0.6–1.0) 4.8 (3.8–6.1)
Adjusted OR (95% CI) 1.0 1.6 (0.3–3.2) 5.8 (2.0–15.7)
Poor HIV medication adherence (%) 70.0 80.5 47.8
Crude OR (95% CI) 1.0 0.5 (0.2–1.2) 2.9 (1.3–6.5)
Adjusted OR (95% CI) 1.0 2.1 (0.8–5.5) 3.3 (1.3–8.7)
CI, confidence interval.
a
Odds ratios adjusted made for age, insurance coverage, employment status, number of medications in HIV regimen, number of non-HIV prescription
medications currently taken, presence of a comorbid chronic condition, treatment for a mental health condition in past 6 months, and treatment for alcohol or
drug use in past 6 months.
(S.D. = 2.9) non-HIV prescription medications. Patients Odds Ratio (AOR) 2.4, 95% confidence interval (CI) 2.2–2.6),
with low literacy had the highest rate of non-adherence low medication self-efficacy (AOR 5.8, 95% CI 2.0–15.7),
(52.2%), while individuals with marginal literacy skills were and medication non-adherence in the past 4 days (AOR 3.3,
least likely to self-report missing any doses of antiretroviral 95% CI 1.3–8.7).
medications (19.5%). Lower literate patients were more
likely to possess poorer knowledge of their HIV treatment, 3.3. Mediational analyses
and report lower self-efficacy for taking their medications as
prescribed. The multivariate model for medication non-adherence in
Multiple logistic regression models that included HIV the past 4 days was repeated in mediational analyses,
treatment knowledge, medication self-efficacy, and medica- including the hypothesized potential mediating factors of
tion adherence as dependent variables were analyzed using HIV treatment knowledge and medication self-efficacy
generalized estimating equations (GEE) for binomial data (Table 3). When both of these variables were entered into the
(Table 2). Low literacy (6th grade) was a significant model, the relationship between literacy and medication
independent predictor of low treatment knowledge (Adjusted adherence attenuated to a point of non-significance (AOR
2.0, 95% CI 0.8–5.3). Low medication self-efficacy, but not
low HIV treatment knowledge, was a significant indepen-
Table 3
Adjusted Odds Ratios (AOR) for non-adherence to HIV medication regi-
dent predictor of medication non-adherence in the final
men, past 4 days model (AOR 7.4, 95% CI 2.7–12.5).
Variable Model 1 Model 2a
Other independent predictors of medication non-adher-
b
ence were older age (>50; AOR 1.6, 95% CI 1.2–2.2) and
AOR 95% CI AORb 95% CI
three or more antiretroviral agents in one’s HIV regimen
Literacy level (AOR 1.2, 95% CI 1.1–1.3). Interactions with literacy,
9th grade (adequate) 1.0 (Referent) 1.0 (Referent)
7th–8th grade (marginal) 2.1 0.8–5.5 1.6 0.6–4.7
knowledge, and medication self-efficacy were entered into
6th grade (low) 3.3 1.3–8.7 2.0 0.8–5.3 the model; none were statistically significant.
HIV treatment knowledge
High 1.0 (Referent)
Moderate 0.8 0.5–1.2 4. Discussion and conclusion
Low 1.1 0.7–1.6
HIV medication self-efficacy 4.1. Discussion
High 1.0 (Referent)
Moderate 3.1 1.4–6.9 We recruited patients from two regions of the United
Low 7.4 2.7–12.5 States to examine the relationship between literacy and
CI, confidence interval. adherence to HIV antiretroviral medications. Nearly one-
a
Model diagnostics: Hosmer–Lemeshow chi-square p = 0.57; c = 0.74. third of patients in our sample were less than 100% adherent
b
Adjustments made for age, insurance coverage, employment status,
to their HAART regimen, and patient literacy level was
number of medications in HIV regimen, number of non-HIV prescription
medications currently taken, presence of a comorbid chronic condition, associated with more than a three-fold greater likelihood of
treatment for a mental health condition in past 6 months, and treatment for missed doses. This provides general support for previous
alcohol or drug use in past 6 months. findings that documented the association between limited
258 M.S. Wolf et al. / Patient Education and Counseling 65 (2007) 253–260
literacy and improper adherence to antiretroviral regimens. of individuals to perform the constellation of skills needed to
Yet in mediational analyses, the effect of literacy on manage chronic disease, such as long-term medication use,
adherence was reduced by 40% after knowledge and self- translating to worse health outcomes [47]. Finally, we were
efficacy were included in the model. Self-efficacy to manage unable to control for other possible contributing variables
medications, but not treatment knowledge, was a significant such as social support in our model. Social support has
mediating factor that independently predicted missed doses previously been described as a mediating factor in the
in a patient’s antiretroviral regimen. To our knowledge, this relationship between health literacy and outcomes, and is
is the first study that documents the association between likely to have a similar role in the literacy and self-efficacy
limited literacy, self-efficacy, and medication adherence in relationship [48].
the context of HIV.
This finding is important, given that many low literacy 4.2. Conclusion
intervention strategies have focused on more superficial
pathways between literacy and health behaviors, such as The responsibility for the successful management of
simplifying health education materials to improve patient chronic disease should not solely reside with the patient,
knowledge of disease and treatment [32–35]. Knowledge, especially for those with limited literacy skills. The Institute
alone, may not sufficiently explain the barrier faced by of Medicine has highlighted the important role of the health
individuals with limited literacy skills. Yet this should not be system in shaping a more health literate environment [10].
surprising, as this notion is supported by previous studies Future research should further explore direct and indirect
that found significant associations between low literacy and pathways, including knowledge and self-efficacy, through
inadequate health knowledge, but were not able to make the which literacy affects health outcomes among patients with
next link between literacy and the health outcome under HIV and other chronic conditions. Research should also
investigation [8,36,37]. continue to be aimed at further developing and evaluating
Our research also supports previous speculations that the the effectiveness of novel low literacy interventions with
relationship between literacy and health outcomes, includ- respect to health outcomes and costs. These strategies should
ing medication adherence, is not linear [37–40]. Rather, also be tested in diverse clinical settings, including
there may be a threshold effect where low literacy, at the 6th community health centers that have government mandates
grade level and below, poses a substantial problem on to serve low-income, minority patients at greater risk for
adherence to antiretroviral regimens. It is also possible that literacy barriers and who face more challenging social
the REALM, while considered to be the most practical environments.
literacy assessment for healthcare settings currently avail-
able to researchers, lacks the precision needed for a detailed 4.3. Practice implications
analysis of the literacy–medication adherence relationship
[28]. Interventions are needed that extend beyond the many
‘plain language’ programs developed over the past decade
4.1.1. Limitations that have been a hallmark professional response to the
Additional study limitations should be mentioned. We health literacy epidemic. These methods have resulted in
assessed adherence via self-report rather than more objective only minimal improvements in knowledge outcomes
measures, such as random pill counts, MEMS caps, or among individuals with low literacy skills, and usually
pharmacokinetic laboratory assessments. Although we do not lead to improvements in health behaviors [32–34].
utilized an existing, validated assessment tool to measure Instead, comprehensive interventions are needed that
HIV medication adherence, patients may under-report target both patient understanding and self-efficacy through
missed doses through questionnaires [25,26]. However, empowering approaches to care. Lorig and colleagues
several recent studies have concluded that brief self-report have extensively documented the effectiveness of a
measures, such as the PMAQ, are viable and accurate means general chronic disease self-management program at
to measure adherence behaviors [3,41,42]. Our data is also improving self-efficacy and health outcomes [49–51].
derived from a cohort of HIV-infected patients interviewed 5 However, their program requires further testing for use
years ago, and may not directly reflect the experience of among lower literate and socioeconomically disadvan-
those currently on HAART regimens. While more recent taged adults.
advances offer the potential for simplified and less restrictive Patients’ literacy and self-efficacy to manage their
dosing schedules, adherence still remains a significant medications can be addressed by improving the commu-
challenge for patients with the disease [43,44]. Therefore, nication skills of healthcare providers. This would include
we believe our findings to still be relevant in the present day. avoiding technical jargon, encouraging questions, and using
Yet even with the reduction in pill burden, seemingly simple the ‘teach back’ technique to confirm patient understanding.
medication schedules and instructions may prove difficult to Providers might also consider discussing the specific
patients with limited literacy [45,46]. In addition, other implementation of the medication schedule within the
studies have shown that limited literacy impacts the ability patient’s current lifestyle and daily routine [52]. This allows
M.S. Wolf et al. / Patient Education and Counseling 65 (2007) 253–260 259
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