Does social support help limited-literacy patients with medication adherence?

Patient Education and Counseling 79 (2010) 14–24

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Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou

Health Literacy and Communication

Does social support help limited-literacy patients with medication adherence? A mixed methods study of patients in the Pharmacy Intervention for Limited Literacy (PILL) Study Valerie R. Johnson a,*, Kara L. Jacobson b, Julie A. Gazmararian c, Sarah C. Blake b a b c

Department of Behavioral Sciences and Health Education, Rollins School of Public Health, Emory University, Atlanta, USA Department of Health Policy and Management, Rollins School of Public Health, Emory University, Atlanta, USA Department of Epidemiology, Rollins School of Public Health, Emory University, Atlanta, USA

A R T I C L E I N F O

A B S T R A C T

Article history: Received 5 November 2008 Received in revised form 25 June 2009 Accepted 2 July 2009

Objective: To explore whether social support helps patients with limited health literacy adhere to their medication regimens. Methods: We interviewed 275 pharmacy patients and assessed social support’s influence on medication adherence for those with limited vs. adequate health literacy. We talked with patients (n = 26) and pharmacists (n = 7) to explore possible explanations for the quantitative findings. Results: Social support was associated with better medication adherence for patients with adequate health literacy but not those with limited health literacy (p < 0.05). When individual subscales for social support were analyzed, having a trusted confidant was the only type of social support associated with better medication adherence for limited-literacy patients (p < 0.05). Comments from patients and pharmacists suggest that limited-literacy patients were less likely to ask the pharmacists questions and infrequently brought relatives with them to the pharmacy. Conclusion: Unless they have a trusted confidant, limited-literacy patients might be reluctant to ask others for the kind of help needed to take their medicines correctly. Practice implications: Pharmacists need training to increase their awareness of limited health literacy and to communicate effectively with all patients, regardless of their literacy skills. To succeed, pharmacists also need the support of the health care systems where they work. Published by Elsevier Ireland Ltd.

Keywords: Health literacy Medication adherence Patient–provider communication Pharmacists Social support

1. Introduction On average, about half of U.S. adults with chronic diseases do not take medications correctly [1–3], a problem that can lead to death, illness, disability, nursing home admissions [4,5–8], and billions of dollars each year in hospitalizations, lost productivity, and lost patient earnings [8–14]. Strong empirical evidence suggests that social support from family and friends can help patients take medicines correctly [2,15–25]. Researchers studying medication adherence have examined various types of social support—emotional support (having someone in your life who provides empathy, who cares about you, and whom you trust) [23], medical information support (having someone to help you read written materials you get from a

* Corresponding author at: Centers for Disease Control and Prevention, 1600 Clifton Road, Mail Stop C-14, Atlanta, GA 30333, USA. Tel.: +1 404 639 2253; fax: +1 404 639 3039. E-mail address: [email protected] (V.R. Johnson). 0738-3991/$ – see front matter . Published by Elsevier Ireland Ltd. doi:10.1016/j.pec.2009.07.002

physician or hospital), healthy reminder support (having someone remind you to do activities to help you stay healthy, such as taking medicines), and tangible support (having someone help you with various tasks such as giving you information to help you understand a situation and helping with daily chores if you are sick) [25]. Another factor contributing to medication adherence is health literacy—the ability to understand and use health information to make important decisions affecting one’s health [26–34]. Previous studies have shown that limited-literacy patients have difficulty correctly identifying medicines [35,36] and understanding how to take medicine [4,28,37,38]. They are reluctant to ask providers questions, possibly because they are ashamed to admit they do not understand [39–41]. In interviews and focus groups, patients said they had not told anyone about their reading difficulties [39], not even their spouses or children [40,42]. They also said they had never brought anyone with them to the hospital to help them read materials or understand what they were reading [39]. About 77 million Americans lack the literacy skills needed to take perform tasks such as determining what time they should take

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prescription medication as it relates to food [43]. Most at risk are people with low incomes, immigrants who do not speak English well, people >65 years of age, those with chronic conditions or mental illnesses, and individuals in racial/ethnic minority populations [27,28]. People with limited literacy are more likely to be hospitalized and visit emergency rooms than those with stronger literacy skills [27]. Over the next 25 years, the burden of low health literacy is projected to worsen as the U.S. population ages, more people require multiple prescription medicines with increasingly complex regimens, and the cognitive processes needed to manage medicines decline [42,44–46]. Although cognitive function has been identified as a predictor of medication adherence [47], older adults who still have good cognitive and physical health have been

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found to be just as, if not more, adherent to health interventions than younger individuals [48]. Researchers studying health behaviors and outcomes among older adults have hypothesized that social support might buffer the negative consequence of limited literacy. In a study of older adults enrolled in Medicare managed care plans, a buffering effect was not apparent: social support’s association with health status and hospitalization was similar for the high- and low-health literacy groups [25]. More than 60% of low-literacy patients in the study said they received little or no social support, which the authors suggest could have been because low-literacy patients were socially isolated or ashamed to ask for help. The kinds of support also differed: low-literacy adults were more likely to

Fig. 1. Conceptual framework for the Pharmacy Intervention for Limited Literacy (PILL) Study. In this framework, social support and background factors (e.g., age, education, income, race, and cognitive health) influence a person’s health literacy skills. Health literacy influences self-efficacy and understanding of medication regimens. Patients’ understanding of medication regimens, in turn, is believed to influence their medication adherence, which then influences their health outcomes. Also coming into play are limitations of the health care system (e.g., use of unclear patient instructions), the patient’s beliefs about medicines (e.g., belief that future health depends on medicines or worry about becoming too dependent on medicines), and barriers (e.g., not being able to afford prescription medicines or not having transportation to the pharmacy). SES: socioeconomic status; ER: emergency room.

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receive medical information support and healthy reminder support but less likely to receive tangible support than patients with higher literacy levels. 1.1. Purpose of study This study is part of a larger project known as the Pharmacy Intervention for Limited Literacy (PILL) Study, which aims to improve medication adherence among limited-literacy patients and evaluate the economic impact of improved refill adherence and reduced use of health care services [36]. The purpose of the current study is to explore whether social support helps patients with limited health literacy adhere to their medication regimens. We were guided by previous research on social support and health literacy [25,49–51] as well as a framework developed for the PILL Study (Fig. 1), which includes constructs from social cognitive theory [52], the health belief model [53], and social support [54– 56]. 2. Methods We used quantitative and qualitative data to examine relationships between social support, health literacy, and medication adherence. The protocol for this study was approved by Emory University’s Institutional Review Board and Grady Health System’s Research Oversight Committee. Patients and pharmacists provided informed consent to participate. 2.1. Quantitative data 2.1.1. Data collection Baseline interviews were conducted with patients at three pharmacies at Grady Memorial Hospital in Atlanta, Georgia (intervention site) and at a community-based satellite pharmacy in Decatur, Georgia (control site). Trained interviewers used a systematic method for enrolling patients. Patients were excluded from the study if they were determined to have cognitive impairment (Mini-Cog Assessment) [57], had poor vision (worse than 20/100), were <18 years of age, or had not been a pharmacy patient for 6 months. We conducted 50-minute interviews at the pharmacies at the time of enrollment, providing a $5 grocery card to participants. We used a modified 8-item version of the Morisky Adherence Scale, a valid and reliable instrument used to assess self-reported medication adherence in various patient populations [58]. Scale items were summed to create a score (range: 0.2–8.0); higher scores indicate greater adherence. Scores were treated as continuous for regression analyses and were dichotomized for chi-square analyses (<7.0 = low adherence; 7.0–8.0 = high adherence) (D.E. Morisky, personal communication, March 7, 2007). To measure social support, we used the Enriched Social Support Instrument (ESSI), which has strong validity and reliability [21] and measures different types of social support (e.g., someone who listens, gives good advice, shows love and affection, helps with daily chores, someone whom they trust and can confide in). Response options range from 1 (none of the time) to 5 (all of the time). Items were summed to create a score (range: 6.0–30.0); greater scores indicated greater social support. Scores were treated as continuous for regression analyses and were dichotomized based on a median split for chi-square analyses (6.0–23.9 = low support; 24.0–30.0 = high support). In chi-square assessments of ESSI subscales, responses were dichotomized (low support = none/ little/some of the time; high support = most/all of the time). To measure health literacy, we used the Rapid Estimate of Adult Literacy in Medicine (REALM), which assesses a person’s ability to recognize medical words. Scores range from 0 (no words

pronounced correctly) to 66 (all words pronounced correctly). For regression and chi-square analyses, scores were dichotomized (0–60 = inadequate/marginal health literacy; 61–66 = adequate health literacy). The REALM has been assessed against other common literacy tests and found to be a valid instrument [59]. 2.1.2. Data analysis Data were edited and cleaned. Patients with missing values were excluded from analyses; however, when an ESSI score was missing, we calculated the mean of existing scores for that patient and used the mean to calculate a summary score (VRJ). We calculated means, medians, and distributions for each variable and conducted chi-square tests to determine if medication adherence was associated with social support and health literacy. In linear regression analyses, we assessed whether social support’s relationship with medication adherence differed by health literacy level. Each model controlled for age and sex. In one model, a multiplicative interaction term was included to test interaction between social support and health literacy. SPSS version 14.0 software was used for statistical analyses [60]. 2.2. Qualitative data 2.2.1. Data collection We conducted focus groups with patients and face-to-face interviews with pharmacists. A standardized telephone script was used to recruit patients already enrolled in the PILL Study. Two recruitment lists were prepared for each site—one for patients with limited health literacy (REALM scores of 0–44) and another for those with adequate health literacy (scores of 45–66)—for a total of four lists. Names were placed in random order; attempts were made to contact and schedule participants for the focus groups, starting at the top of the list, until each focus group had enough participants. We divided the focus groups by health literacy level out of concern that participants with higher literacy skills might dominate the discussions. Four focus groups were held: two at the intervention site and two at the control site. Each participant received refreshments and $20 for participating in the 2-h meeting. We used semi-structured facilitator’s guides asking about patients’ understanding of their medicines; strategies they used to remember to take their medicines; information pharmacists provided; what kinds of questions they asked pharmacists, and how family or friends helped them with medicines. Pharmacy supervisors helped identify pharmacists who might be available for interviews. Pharmacists were contacted via e-mail or phone. Those who agreed to participate received follow-up phone calls to confirm their interest. We conducted 30-minute interviews at the pharmacies, providing $20 to participating pharmacists. An interview guide included questions about the pharmacists’ challenges at work, interactions with patients, common questions patients ask, signs indicating a patient might not understand what the pharmacist said, special strategies pharmacists used to counseling limited-literacy patients, and patients who brought others to the pharmacy window. 2.2.2. Data analysis We audio-recorded information from patients and pharmacists and took detailed notes (SCB and VRJ). Tapes were transcribed and kept in a password-protected computer. Individuals with access to the data signed confidentiality agreements. When this research is completed, hard-copy data will be shredded, and electronic files will be deleted. After analyzing quantitative data from patients, we analyzed qualitative data from patients and pharmacists. Two members of the research team independently read each transcript and

V.R. Johnson et al. / Patient Education and Counseling 79 (2010) 14–24

identified themes before meeting to discuss the results (SCB and VRJ). Some themes came from the PILL Framework; other themes emerged as analysis progressed. Key themes were identified, and an initial coding index was created that provided detailed descriptions of what each code aimed to capture. We met to discuss the codes before revising the index. We clustered themes into core categories. We analyzed the transcripts again to identify how the categories of themes were similar, different, and related and to compare frequency of core categories in transcripts. We continued this iterative process until we reached consensus. We used NVivo 7 to code transcripts, identify themes, and compare frequency of themes across groups [61]. 3. Results 3.1. Baseline interviews A total of 275 patients participated in baseline interviews (intervention site, n = 173; control site, n = 102) (Fig. 2). A majority of participants were female, African American, >50 years old, and unmarried. Most had at least a high school education and reported annual household incomes below $10,000. More than 68% of participants reported low medication adherence; nearly 60% had inadequate/marginal health literacy; and 48% reported low social support (Table 1). In chi-square analyses, low social support was more likely among participants aged <65 years (p < 0.05), unmarried participants (p < 0.005), and those with annual household incomes below $10,000 (p < 0.05). Inadequate/marginal health literacy was more likely among participants with incomes below $10,000 (p < 0.005), African Americans (p < 0.001), and participants with less than a high school education (p < 0.001). Better medication adherence was associated with greater social support (p < 0.001)

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and older age (p < 0.001). Neither medication adherence nor social support was associated with health literacy. We analyzed each ESSI subscale and found that medication adherence was associated with having someone you can count on when you need to talk (p < 0.0001), having someone you can count on to provide you with emotional support (p < 0.05), and having as much contact as you would like with someone in whom you can trust and confide (p < 0.005). When we ran the same analysis and stratified by health literacy level, we found that having as much contact as you would like with someone in whom you can trust and confide was the only item associated with better medication adherence for inadequate/marginal-literacy patients (p < 0.05) (Table 2). In multiple linear regression analyses, greater social support was associated with better medication adherence, but only for patients with adequate health literacy (b = 1.827, p < 0.05) (Table 3). In addition, the difference between inadequate/marginal and adequate health literacy changed for different values of social support, as indicated by the interaction observed between social support and health literacy (b = 0.086, p < 0.05). At the highest levels of social support, patients with adequate health literacy reported better medication adherence than those reporting inadequate/marginal health literacy. The reverse was true at the lowest levels of social support (Fig. 3). 3.2. Patient focus groups Twenty-six patients participated in focus groups. All participants were African American and most were women (Table 4). Four key themes emerged: (1) how family and friends help me with my medicines; (2) I want to be independent and responsible for my health; (3) medicines are important to my health, and I must take them as directed; and (4) asking the pharmacist questions. Each of

Fig. 2. Patients in the Pharmacy Intervention for Limited Literacy (PILL) Study’s baseline interviews, 2006. Response rate = 17.9%. No significant sociodemographic differences were observed between participants and nonparticipants.

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Table 1 Percentage distributions for participants, by selected characteristics—Pharmacy Intervention for Limited Literacy (PILL) Study, Atlanta, Georgia, 2006. Participant characteristics

N

(%)

Total

275

(100)

Sex (n = 275) Male Female

74 201

(26.9) (73.1)

Race (n = 275) Black/African American White Othera

237 14 24

(86.2) (5.1) (8.7)

Ethnicity (n = 273) Hispanic Non-Hispanic

5 268

(1.8) (98.2)

Age in years (n = 275); mean = 53.91 (SD = 12.50) <50 50–64 65

100 124 51

(36.4) (45.1) (18.5)

Marital status (n = 273) Married/living with someone Separated/divorced Widowed Single/never married

47 107 50 69

(17.2) (39.2) (18.3) (25.3)

76 199 100 66 33

(27.6) (72.4) (36.4) (24.0) (12.0)

Employment status (n = 270) Unemployed Employed full time Employed part time Retired, disabled, or in school

72 23 43 132

(26.7) (8.5) (15.9) (48.9)

Annual household income (n = 256) <$10,000 $10,000

163 93

(63.7) (36.3)

Health literacyb (n = 273); mean = 51.31 (SD = 17.09) Inadequate/marginal Adequate

163 110

(59.7) (40.3)

Social supportc (n = 275); mean = 22.24 (SD = 6.18) Low High

132 143

(48.0) (52.0)

Highest year of education completed (n = 275)
Medication adherenced (n = 272); mean = 4.95 (SD = 1.82) Low High

186 86

(68.4) (31.6)

SD: standard deviation; GED: general equivalency diploma. a Other racial category includes American Indian or Alaska Native, or of another race. None of the participants identified themselves as being Asian, Native Hawaiian, or Other Pacific Islander. b Measured by using the Rapid Estimate of Adult Literacy in Medicine (REALM). Inadequate/marginal health literacy = 0–60, adequate health literacy = 61–66. c Measured by using the ENRICHD Social Support Instrument (ESSI). Low and high categories were based on a median split of ESSI summary scores. Low social support = 6.0–23.9, high social support = 24.0–30. d Measured by using the 8-item modified Morisky Scale. Low adherence = 0–<7, high adherence = 7–8.

these themes will be briefly discussed with supporting quotes from participants (Table 4). 3.2.1. How family and friends help me with my medicines For both limited- and adequate-literacy patients, the most common type of support was a phone call from family or friends, reminding them to take their medicine or simply asking, ‘‘Did you

take your medicine?’’ Two patients in a limited-literacy focus group said family members had come with them to the pharmacy; however, none of the participants in the adequate-literacy focus groups said they took anyone with them to the pharmacy. Patients in both the limited- and adequate-literacy focus groups mentioned not receiving any help from family or friends. They said they lived alone or did not have family. In the adequate-literacy groups, patients said they did not receive any help from others because they wanted to be independent (see Section 3.2.2). For participants in the adequate-literacy focus groups, social support was more likely to have been prompted when patients had forgotten to take their medicines. One woman’s grandson became concerned when he found out that she had missed taking her heart medicine several times. Several limited-literacy participants recalled how their families began helping them with medication adherence after they experienced a medicine-related crisis. One man said that his family began calling him daily after he took medicines that interacted, lapsed into a coma, and nearly died. Another woman recalled how she had unintentionally taken too much anti-seizure medicine. Afterwards, her mother and daughter went with her to the pharmacy and stayed with her to help her take her medicines as directed. 3.2.2. I want to be independent and responsible for my health The desire to be independent was expressed by several participants with adequate health literacy but not by any of the participants with limited health literacy. A similar theme arose in the other adequate-literacy focus group when participants were asked, ‘‘How do pharmacists help you remember?’’ One participant said it was her responsibility to remember, not the pharmacist’s. Others in the group agreed. 3.2.3. Medicines are important to my health, and I must take them as directed Both limited- and adequate-literacy participants said medicines were vitally important to their health and stressed the importance of taking medicines as directed. One woman in an adequateliteracy group recalled how she had not missed a single dose after her doctor warned her she could die if she did not take her medicines. A woman in a limited-literacy group, who took medicine for a seizure disorder, scolded another member of the group who said her daughter did not take her anti-seizure pills exactly 12 h apart. 3.2.4. Asking the pharmacist questions Several patients in the adequate-literacy focus groups said that if they do have questions, it is their responsibility to speak up. Conversely, in both of limited-literacy focus groups, patients indicated they understood what the pharmacists told them and did not ask questions. 3.3. Pharmacist interviews We interviewed seven pharmacists (Table 4). Three key themes emerged: (1) how pharmacists identify and help patients with limited literacy, (2) pharmacists’ interactions with family and friends, and (3) limited-literacy patients’ reluctance to ask questions. 3.3.1. How pharmacists identify and help patients with limited literacy Patients do not come out and say they cannot read, several of the pharmacists commented, so the pharmacists have learned the signs that suggest a person might have limited reading skills: Limited-literacy patients tend to pull out papers that they bring with them to the pharmacy window. Some will put their initials

V.R. Johnson et al. / Patient Education and Counseling 79 (2010) 14–24

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Table 2 Associations between medication adherencea and social supportb for patients with inadequate/marginal health literacyc—Pharmacy Intervention for Limited Literacy (PILL) Study, Atlanta, Georgia, 2006. Social support subscales

Medication adherence

Chi-square

p

1. Is there someone available to you whom you can count on to listen to you when you need to talk? None/little/some of time 50 (40.7) 9 (23.1) Most/all of time 73 (59.3) 30 (76.9)

3.949

NS

2. Is there someone available to give you good advice about a problem? None/little/some of time 50 (41.0) Most/all of time 72 (59.0)

12 (30.8) 27 (69.2)

1.302

NS

3. Is there someone available to you who shows you love and affection? None/little/some of time 30 (24.6) Most/all of time 92 (75.4)

7 (18.4) 31 (81.6)

0.620

NS

4. Is there someone available to help you with daily chores? None/little/some of time 73 (59.8) Most/all of time 49 (40.2)

21 (53.8) 18 (46.2)

0.436

NS

5. Can you count on anyone to provide you with emotional support (talking over problems or helping you make a difficult decision? None/little/some of time 44 (35.8) 11 (28.2) Most/all of time 79 (64.2) 28 (71.8) 0.756

NS

6. Do you have as much contact as you would like with someone in whom you can trust and confide? None/little/some of time 48 (39.0) 8 (20.5) Most/all of time 75 (61.0) 31 (79.5)

4.486

<0.05

0.002

NS

Low adherence, n (%)

High adherence, n (%)

7. Are you currently married or living with a partner? Yes 28 (22.8) No 95 (77.2)

9 (23.1) 30 (76.9)

NS: not significant at the p < 0.05 level. a Medication adherence was measured by using the 8-item modified Morisky Scale. Low adherence = 0–<7, high adherence = 7–8. b Social support was measured by using the ENRICHD Social Support Instrument (ESSI). c Health literacy was measured by using the Rapid Estimate of Adult Literacy in Medicine (REALM); Inadequate/marginal health literacy = 0–60, adequate health literacy = 61–66.

instead of signing their whole name. Others will sign their names with an ‘‘X.’’ Several pharmacists observed that the limited-literacy patients they serve have figured out their own methods for understanding their medicines, such as using color coding or simple pictures drawn on the pill bottle. When asked what strategies they use to help patients with limited literacy, most pharmacists said they asked patients to repeat back to them the instructions for taking their medicines

until patients confirmed they understood—a method known as teach-back. Some pharmacists opened the medicine to show patients what their pills looked like. Several pharmacists said they draw simple pictures or letters on the pill container. When patients have many different prescriptions, one pharmacist groups the medicines by health condition rather than by the medicine’s name while counseling patients because she believes that is how patients think of their medicines.

Table 3 Associations between medication adherence (DV) and social support and health literacy (IVs)a—Pharmacy Intervention for Limited Literacy (PILL) Study, Atlanta, Georgia, 2006. Multiple Regression Model 1 (no interaction term)

c

Social support (main effects) Health literacyd (dummy variable) Age Sex Adjusted R2 for full model Multiple Regression Model 2 (interaction term added)

Medication adherenceb

b

SE

R2 change

p-Value

95% CI

0.060 0.072 0.653 0.656

0.017 0.214 0.149 0.242

0.044 0.000 0.051 0.024

<0.001 NS <0.001 <0.005

0.026, 0.093 0.350, 0.494 0.361, 0.946 0.179, 1.132

0.106 Medication adherenceb

b c

Social support (main effects) Health literacyd (dummy variable) Age Sex Social support  health literacy (interaction term) Adjusted R2 for full model

0.025 1.827 0.600 0.628 0.086

SE

R2 change

p-Value

95% CI

0.022 0.793 0.149 0.240 0.035

0.044 0.000 0.051 0.024 0.020

NS <0.05 <0.001 <0.05 <0.05

0.017, 0.068 3.389, 0.265 0.307, 0.893 0.156, 1.100 0.018, 0.154

0.123

b: unstandardized coefficient; CI: 95% confidence interval; DV: dependent variable; IV: independent variable; NS: not significant at the p < 0.05 level; SE: standard error. a We used the enter/next method in SPSS to enter independent variables hierarchically in the following order: (1) social support, (2) health literacy, (3) age, (4) sex, and (5) multiplicative interaction term for social support and health literacy. b The 8-item modified Morisky Scale was used to calculate medication adherence scores. Scores were treated as a continuous variable. c Social support scores were calculated by using the ENRICHD Social Support Instrument (ESSI). Scores were treated as a continuous variable. d Health literacy scores were calculated by using the Rapid Estimate of Adult Literacy in Medicine (REALM). This was a dummy variable, with inadequate/marginal literacy (REALM score of 0–60) as the reference category in relationship to adequate literacy (REALM score of 61–66).

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Fig. 3. Relationship between social support and medication adherence, stratified by inadequate/marginal vs. adequate health literacy skills, Pharmacy Intervention for Limited Literacy (PILL) Study. The regression line for adequate literacy increases as social support scores increase, whereas the regression line for inadequate/marginal literacy patients remains flat and unchanged, regardless how high or how low social support is. Moreover, the regression lines for inadequate/marginal vs. adequate literacy are a significant distance apart from each other (b = 1.827, p < 0.05), indicating that social support’s effects did vary for the two groups. In addition, the difference between inadequate/marginal and adequate health literacy changed for different values of social support, as indicated by the statistically significant interaction observed between social support and health literacy (b = 0.086, p < 0.05). This interaction is evident in the crossing lines. At the lowest levels of social support, patients with inadequate/marginal health literacy had better medication adherence than those with adequate health literacy. The reverse was true, however, at the highest levels of social support.

3.3.2. Pharmacists’ interactions with patients, families, and friends When limited-literacy patients come to pick up their medicines, they generally come in alone, one pharmacist observed. Most patients who bring others with them to the pharmacy are elderly, need someone to drive them to the pharmacy, or need a relative to translate the pharmacist’s counseling into their language. Relatives are not always helpful. For example, one pharmacist said problems can arise when a relative is running an errand to pick up the patient’s medicine, is in a hurry, and does not listen carefully to the pharmacists’ instructions. 3.3.3. Limited-literacy patients’ reluctance to ask questions One of their biggest challenges was that patients rarely ask questions, several pharmacists said. Patients most likely to pay close attention to the pharmacists are elderly patients, patients with serious illnesses, or parents picking up medicines for their sick children, they observed. When patients feel uncomfortable asking questions on their own, one pharmacist said she asked them open-ended questions in hopes of encouraging them to talk and ask questions. 4. Discussion and conclusion 4.1. Discussion For the limited-literacy patients in this study, the only type of social support associated with high medication adherence was having as much contact as they would like with someone they trust and in whom they can confide. One possible explanation is that patients with relatives or friends they trust enough to tell about their reading difficulties benefit because those trusted confidants can then help them read and understand their medicine instructions. For those with no trusted confidants, all other types of support could have minimal benefits because the people providing support are unaware of the patients’ reading difficulties. These explanations are consistent with previous studies docu-

menting that limited-literacy patients keep their reading difficulty a secret from family and friends [39,40,42]. Comments from patients and pharmacists corroborate previous reports from limited-literacy patients that they never brought anyone with them to the hospital to help them read or understand materials [39]. However, they conflict with previous findings that limited-literacy patients receive more help reading and understanding written materials than patients with high literacy [25]. Demographic differences in PILL Study participants compared with the managed care patients in other studies could explain why PILL participants may have received limited medical information support. Further research is needed to determine if demographics influence the types of social support that limited-literacy patients receive. Patients in both of the limited-literacy focus groups said relatives began helping them after they were hospitalized for medication overdoses or interactions. These problems might have been associated with difficulty reading and understanding medication instructions. This explanation is in line with findings that limited-literacy patients are more likely to have difficulty understanding how to take their medicines [4,28,37,38] and are more likely to visit emergency rooms and hospitals than those with stronger literacy skills [27]. Patients in both groups expressed a strong belief that taking medicines correctly is vitally important to their health, supporting a key construct of the health belief model [53]. But asking questions and pressing for answers when medication regimens are unclear was a theme that emerged only among adequate-literacy patients. Comments from both patients and pharmacists support previous findings that limited-literacy patients rarely ask providers questions [39–41]. And if family members who pick up prescriptions are too busy to listen and convey instructions to patients, as one pharmacist suggested, this could explain why some limited-literacy patients reporting strong social support did not also report better medication adherence. These findings add support to behavior change theories and the PILL Study Framework, which postulates that many factors— including social support, health literacy, health beliefs, and selfefficacy—can influence a patient’s adherence to medication regimens. 4.2. Strengths and limitations A strength of this study is the use of mixed methods and triangulation—the process of synthesizing data from multiple sources [62]. By using an iterative process to analyze quantitative and qualitative data from patients and pharmacists, we identified possible explanations for why some forms of social support might not shield patients from the negative consequences of limited literacy and why having a trusted confidant might be important in promoting medication adherence. These findings cannot be generalized to all populations, however, because most study participants were low-income, urban, African American women with relatively low social support (the mean ESSI score for PILL participants [22.24] was substantially lower than mean scores in previous studies using the ESSI [21,63]). In addition, some limitedliteracy participants could have been excluded because of interviewer bias and selection bias (e.g., only patients who came in to pick up their own medicines could participate, and the MiniCog Assessment could have excluded patients with limited literacy rather than dementia [64]). Medication adherence scores could be inflated because we used a self-reported measure of medication adherence rather than a more objective measure (e.g., biological assays or electronic monitoring of when pill containers are opened). Finally, content bias is possible when using the REALM to assess the literacy skills of African Americans [65].

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Table 4 Key themes from patient focus groupsa and pharmacist interviewsb—Pharmacy Intervention for Limited Literacy (PILL) Study, Atlanta, Georgia, 2006 and 2007. Key themes from patients

Comments from patients with limited health literacy

Comments from patients with adequate health literacy

How family and friends help me with my medicines

Well, basically, like I say if I’m doing, if I’m busy, my wife, she’ll come around me at work and call and make sure I take the medicine. [A4]

I have a friend who reminds me. He just calls and asks, ‘‘Did you take your medicine?’’ [C3]

Last month, I, I had taken a overdose of my Dilantin, and I was in the hospital. When I got home, my daughter and my mother made sure that I took my medicine. [A1]

When I first started missing my medication, he [my son] said, ‘‘I could tell.’’ My cell phone, he [my son] sets the alarm on it. [D1]

My son, he’ll call. They’ll be talking before you get on the phone, ‘‘Did you take your medicine this morning?’’ [B1]

I went to church a couple of Sundays and stayed longer than I intended to and didn’t have it [my heart medicine] with me, and after that, he said, ‘‘OK Grandma.’’ [D2]

All my siblings are diabetics and they all call me long distance, you know, checking. Well, they just showing concern.. They ask about, ‘‘How is your blood sugar today? Is your cholesterol alright? Are you taking your medicine?’’. . . I took my medicine, I took 800 milligram Ibuprofen, and I took 40 units of insulin, and two hours later everything hit rock bottom. . I went into like a diabetic seizure, coma, OK, and when I come to, I was in ICU with about 13 to 14 blankets over me, you know, because I was gone. [B3] I want to be independent and responsible for my health

How do pharmacists help you remember to take your medicines? [Facilitator] That’s your responsibility, not theirs. [C2] I’m trying to be self- independent, I’m trying to do it on my own. . Well I’m planning on going back into the working field so I’m trying to do that on my own, trying to get everything back to myself where I can be responsible. [D3]

Medicines are important to my health, and I must take them as directed

Listen to what I’m telling you. I’m telling you what I know. That’s too far apart. If she’s taking it at 8:30 in the morning, she got to take it at 8:30 at night, 12 hours apart. [A2]

Doctor said, ‘‘You’re going to end up blind or dead.’’ I don’t think in the last 2 to 3 years I didn’t remember or that I’ve ever missed a pill. I don’t want to die. [C4]

I know I want to live, that’s number one. So, living is a key issue, so, so I know I want to live and I got to take that [medicine] to keep the sugar, cholesterol down. [B2]

It’s important that I follow the directions and take my pills on time. [D3]

I have a little chest. I keep mine’s right beside me on the bed. It has my medicine, and it’s just like a Holy Bible. You have it there. You got to keep it right there with the Holy Bible. [D1] Asking the pharmacist questions

When you talk with your pharmacist, have there been times when he or she has said something to you about your prescription and you haven’t understood, it’s not clear?’’ [Facilitator A]

Last time I was here, they [the pharmacists] only discussed the medicines if it was a new medicine. I think that’s fine with me. It’s a waste of time to talk about medicines I already know. . It’s up to us to ask. I ask if I don’t understand. We have that right. [C1]

No. [A1]

Did you have any questions when he [the pharmacist] was going over that card [showing pictures of your medicines and instructions]? [Facilitator D]

Anything at all? [Facilitator A, turning to ask another participant]

Yes, I asked him, you know, you know about a pill, a new pill that I had. . It was an antibiotic, and he was telling me how to take it and drink a lot of water. [D2]

Uh uh. [A5] Anything that you asked them in particular about them? [Facilitator A] No. [A3] They explain it. [A5] Yea, they explain it to you. [A3] Key themes from pharmacists

Comments from pharmacists

How pharmacists identify and help patients with limited literacy

Most of the time, they’re alone. They have a lot of papers with them. I don’t know if they’re writing themselves notes to remember things or whatever, but once they go into a wallet or stuff, they bring out a lot of little papers. Most of them are older. [Pharmacist D1] Some will put their initials instead of signing their whole name. [Pharmacist D3] Especially when, after a consultation, [they say], ‘‘I don’t have any questions.’’ You can tell if they really got it or not. Some of them sign with an X. And it will take them two minutes just to sign it. [Pharmacist G2]

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Table 4 (Continued ) Key themes from pharmacists

Comments from pharmacists Actually, they’re pretty good at getting around not being able to read. They find all these different things. ‘‘Oh, the peach tablet. Yeah. I take that once a day. The blue tablet, I take 3 times a day.’’ So I just take them [the tablets] out of the bottle and tell them to look at it and tell me, ‘‘What are you doing with this tablet?’’ I had to talk about things in a less scientific fashion, more in the layman’s terms, and that was some learning I had to do. Instead of saying, ‘‘This is your diuretic,’’ you’ve got to say, ‘‘This is your water pill.’’ [Pharmacist D2] Because they can’t read, and they’re not telling you they can’t. . some want you to put a little heart or just put ‘‘H’’ for heart or ‘‘BP’’ [for blood pressure] so they know. Or ‘‘bedtime’’ so they can see that and not necessarily rely upon the bottle because they can’t read it. I’ll say, ‘‘OK, now, you’ve got four blood pressure medications. You can take them together in the morning. And these two are for cholesterol. You can take them together at night.’’ [Pharmacist G1]

Pharmacists’ interactions with patients, relatives, and friends

The child might say, ‘‘Well, you know, I’m giving the medicine to my mom. You can go over it with me.’’ But she [the mom] will be there, and I’ll show her the medicine, and she [the daughter] will say, ‘‘Mom, you know what this is – right?’’ And it’s kind of like we’re all interacting together, going over the medication. That’s usually how it goes . [Pharmacist G3] I mean, we think we’re explaining it to them and they, you know, seem to understand. And you can go back and ask them, and it’s like they didn’t get it right. . It didn’t connect at all. I don’t know if it’s embarrassment or they’re just ready to go, you know, but it happens a lot. [Pharmacist G1] Most of the time, if there’s a [limited-literacy] problem, a patient with particular issues, most of the time, they have a caregiver that normally will pick up the medication or actually will be giving it to them, and that’s the one you’re giving the information to. [Pharmacist D1] A lot of times, I think I get a better response when people are sick than when they’re picking up their regular medication. They’re in a rush, but when they are sick and they’re getting antibiotics or something like that, I get a better response. Or when they have children because they’re very concerned about how to give the medication to kids than they are basically when they’re picking up refills. [Pharmacist D2]

Limited-literacy patients’ reluctance to ask questions if they do not understand

They don’t ask questions. You have to ask them. Tell them about the medications and also ask them questions. . It seems to me like they’re scared or something. . or intimidated. I don’t know exactly what it is. But you try to make them feel as comfortable as possible. . I ask open-ended questions. [For example,] ‘‘So, how are you going to take your medication once you get home? Is there anyone at home who can help you?’’ [Pharmacist G2] Most of the time, they really want to know the information when you’re consulting them, but you know it’s going in one ear and out the other. They just want to get it [their medicine], leave, and do whatever they need to do in the evening. Then when they have questions, they’ll call you the next day or a week later or something like that. [Pharmacist D1] Some, you have to read their face because they’ll look at you, and you kind of get that blank stare that kind of says they’re hearing you, but they’re not really understanding you. They will sometimes tell you, but sometimes they won’t tell you. [Pharmacist G1] A lot of the apparatuses that we dispense, like the asthma inhalers, they’re all new and different. . We have samples so we can show people how to use them. And you ask them, ‘‘Have you used this before? Are you familiar with it? They say they know, but I’m just really. . . I don’t think they do. A lot of our clients are older, and they don’t want to be looked at like they’re stupid. I think that has a lot to do with it. [Pharmacist D2] We have a large population of patients that have people that pick up their medicine, and they don’t really care. You can talk to them, and they’ll be like, ‘‘OK, I got to go.’’ In some situations, It’s helpful when you have a caregiver that’s truly a caregiver. [Pharmacist D3]

a Four focus groups were held; all 26 participants were African American and most were women. The composition of the groups was as follows: Limited Health Literacy/ Group A, n = 5 (1 man and 4 women); Limited Health Literacy/Group B, n = 6 (3 men and 3 women); Adequate Health Literacy/Group C, n = 11 (all women); Adequate Health Literacy/Group D, n = 4 (all women). Participants names were removed from transcripts and codes were created, using Groups A–D to identify which group the participant was in. b Seven pharmacists were interviewed (intervention site, n = 4; control site, n = 3); all were African American (3 men and 4 women).

4.3. Conclusion Unless they have a trusted confidant in their lives, limitedliteracy patients might be reluctant to ask others for the kind of help they need to take their medicines correctly. During counseling sessions, pharmacists are in an ideal position to build rapport and trust with patients, improve patient understanding, and link socially isolated patients with others who can help them with their medicines. 4.4. Practice implications Patients are not likely to disclose that they have difficulty understanding their medication instructions. Moreover, many pharmacists have large numbers of patients to serve and limited face-to-face time with patients. Therefore, expecting pharmacists to screen each patient for limited health literacy so they can then tailor counseling sessions to match the patient’s needs may not be feasible. A better approach is for pharmacists to follow universal

precautions—assume that every patient has limited health literacy, and practice clear communication with all patients, not just those with limited health literacy [66,67]. Pharmacists’ training should cover the problem of limited literacy and strategies for strengthening communication skills with all patients. Training should cover techniques such as teachback, which help pharmacists build trust and rapport with patients, encourage patients to ask questions, and confirm that patients understand how to take their medicines correctly [68]. Such communications have been found to make a difference. In a study of low-income African Americans with high blood pressure, for example, Schoenthaler et al. reported that provider communications rated by patients as being more collaborative (e.g., friendlier and encouraging patients to ask questions) were significantly associated with better medication adherence [69]. To succeed in these efforts, pharmacists need the support of the health care systems where they work [67,70]. Support should include not only training for pharmacists but also resources, policies, and environmental changes (e.g., easy-to-read medicine

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instructions, forms, and signs) that improve patient comprehension and navigation through the facility [66,71]. When developing pharmacy-based interventions, researchers must include limited-literacy patients to gain their insights for how to improve the types of support patients need with their medicines. Future research also should explore how limited health literacy affects the types of social support patients receive. Acknowledgments We gratefully acknowledge the members of the Pharmacy Intervention for Limited Literacy (PILL) Study Team; Sunil Kripalani, MD, MSc, for guiding the development of the PILL Study; Brian Schmotzer, MS, for help with statistical analysis methods; Daniel S. Budnitz, MD, MPH, for valuable feedback; and PEC peer-reviewers for their thoughtful review and guidance. This study was funded by the Robert Wood Johnson Foundation and the Agency for Healthcare Research and Quality (Contract No. 290-000011). References [1] Cramer JA, Mattson RH, Prevey ML, Scheyer RD, Ouellette VL. How often is medication taken as prescribed? A novel assessment technique. J Amer Med Assoc 1989;261:3273–7. [2] De Geest S, Abraham L, Gemoets H, Evers G. Development of the long-term medication behavior self-efficacy scale: qualitative study for item development. J Adv Nurs 1994;19:233–8. [3] De Klerk E, Van Der Linden SJ. Compliance monitoring of NSAID drug therapy in ankylosing spondylitis: experiences with an electronic monitoring device. Rheumatology 1996;35:60–5. [4] Hardin LR. Counseling patients with low health literacy. Am J Health Syst Pharm 2005;62:364–5. [5] Osterberg L, Blaschke T. Adherence to medication. N Engl J Med 2005;353: 487–97. [6] Ho PM, Spertus JA, Masoudi FA, Reid KJ, Peterson ED, Magid DJ, Krumholz HM, Rumsfeld JS. Impact of medication therapy discontinuation on mortality after myocardial infarction. Arch Intern Med 2006;166:1842–7. [7] Ho PM, Rumsfeld JS, Masoudi FA, McClure DL, Plomondon ME, Steiner JF, Magid DJ. Effect of medication nonadherence on hospitalization and mortality among patients with diabetes mellitus. Arch Intern Med 2006;166:1836–41. [8] Soumerai SB, Pierre-Jacques M, Zhang F, Ross-Degnan D, Adams AS, Gurwitz J, Adler G, Safran DG. Cost-related medication nonadherence among elderly and disabled Medicare beneficiaries: a national survey 1 year before the Medicare drug benefit. Arch Intern Med 2006;166:1829–35. [9] Berg JS, Dischler J, Wagner DJ, Raia JJ, Palmer-Shevlin N. Medication compliance: a healthcare problem. Ann Pharmacother 1993;27:S1–24. [10] Senst BL, Achusim LE, Genest RP, Cosentino LA, Ford CC, Little JA, Raybon SJ, Bates DW. Practical approach to determining costs and frequency of adverse drug events in a health care network. Am J Health-Syst Pharm 2001;58: 1126–32. [11] McDonnell PJ, Jacobs MR. Hospital admissions resulting from preventable adverse drug reactions. Ann Pharmacother 2002;36:1331–6. [12] Peterson AM, Takiya L, Finley R. Meta-analysis of trials of interventions to improve medication adherence. Am J Health-Syst Pharm 2003;60:657–65. [13] Frost & Sullivan, Inc. Patient nonadherence: tools for combating persistence and compliance issues. First in a series of two white papers on patient adherence developed in cooperation with McKesson specialty. New York, NY: Frost & Sullivan; 2005. Retrieved November 10, 2006, from http:// www.frost.com/prod/servlet/cpo/55342907.pdf. [14] O’Connor PJ. Improving medication adherence. Editorial. Arch Intern Med 2006;166:1802–4. [15] Catz SL, Kelly JA, Bogart LM, Benotsch EG, McAuliffe TL. Patterns, correlates, and barriers to medication adherence among persons prescribed new treatments for HIV disease. Health Psychol 2000;19:124–33. [16] Simoni JM, Frick PA, Huang B. A longitudinal evaluation of a social support model of medication adherence among HIV-positive men and women on antiretroviral therapy. Health Psychol 2006;25:74–81. [17] Edwards LV. Perceived social support and HIV/AIDS medication adherence among African American women. Qual Health Res 2006;16:679–91. [18] Mor-Barak ME, Miller LS. A longitudinal study of the causal relationship between social networks and health of the poor frail elderly. J Appl Gerontol 1991;10:293–310. [19] Ahern D, Gorkin L, Anderson J, Tierney C, Hallstrom A, Ewart C, Capone J, Schron E, Kornfeld D, Herd J, Richardson D, Follick M. Biobehavioral variables and mortality or cardiac arrest in the Cardiac Arrhythmia Pilot Study (CAPS). Am J Cardiol 1990;66:59–62. [20] Gorkin L, Schron EB, Brooks MM, Wiklund I, Kellen J, Verter J, Schoenberger JA, Pawitan Y, Morris M, Shumaker S. Psychosocial predictors of mortality in the

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