Health Literacy and HIV Treatment Adherence in HIV Patients - Literature review Example

Teachers College, Columbia Department of Health andBehavior Studies Health Literacy and HIV Treatment Adherence in HIV Patients A Literature Review By Cynthia C Lee, MA, CHES 2/8/2011 Submitted in Fulfillment for the requirements of Master of Science in Health Education Course Advisor Prof Ray Marks TABLE OF CONTENTS 1. Abstract----------------------------------------------------------------------------------------3 2. Health Literacy-------------------------------------------------------------------------------4 3. Health Literacy and Health Related Behavior and Outcome--------------------------4 4. Health Literacy and HIV/AIDS-----------------------------------------------------------8 5. Why is Treatment Adherence Important for HIV/AIDS-----------------------------10 6. Health Literacy and HIV Treatment Adherence--------------------------------------11 7. Strategies to Improve Treatment Adherence in Low Literacy Subjects-----------15 8. References---------------------------------------------------------------------------------19 Abstract The only effective treatment for HIV/AIDS is regular medication with anti-retroviral therapy (ART). Regularity in timing and dosage of medication is essential not only for the improved health of the subject but also to prevent the emergence of resistant strains of the virus. Non-adherence to the treatment is one of the biggest hurdle in tackling the AIDS pandemic. Among the different factors contributing to non-adherence, health literacy is considered one of the major players. We carried out a literature survey using search terms “ “Health literacy” and HIV”, “Treatment adherence and HIV”, “Literacy and Treatment Adherence” and “Literacy treatment adherence HIV) in the databases of OVID and Pubmed. The relevant articles were reviewed. Any new articles that were encountered amongst these articles in their citations were retrieved and also reviewed. We found that there are a fair number of articles dealing with various aspects of health literacy, educational literacy and HIV/AIDS. However, there are very few articles on interventions designed to improve treatment adherence in low literacy patients. Health Literacy and Treatment Adherence Health Literacy According to Healthy People 2010, health literacy is defined as “the degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions”. Apart from the healthcare aspect, where the focus is on communication between healthcare providers and patients, explaining and obtaining informed consent and managing patient’s treatment regime, an extremely important facet of health literacy is in the field of public health. As per the CDC data, the American patient obtains information and makes his or her treatment decision based on the feedback received from the home or the community, while spending just about an hour a year in the medical care provider’s premises. Health Literacy and Health-Related Behavior and Outcome The Council of Scientific Affairs, American Medical Association states that poor health literacy is “a stronger predictor of a person’s health than age, income, employment status, education level, and race”. The Institute of Medicine reports that nearly half of the US population, about 90 million individuals, have poor health literacy. This culminates into poor understanding of their health status and its treatment, poorer health status, irregularity in dosage consumption, sub-optimal use of health services, inability to understand the do’s and don’t of medication consumption and a higher hospitalization rate. Poor health literacy creates barriers to fully understanding an individual’s health, illness, treatment and medication management. The population at risk includes the elderly (older than 65 years), minorities, immigrants, economically challenged and those suffering from chronic ailments. Not only are these individuals unable to decipher the instructions accompanying prescription drugs, but they have limited ability to grasp the significance of health related news, provide relevant information to health-care givers, manage their chronic ill-health, grasp the significance of unhealthy practices, identify the source of bias in the information available to them through mass media and access health care for themselves and their family. This was further corroborated by the report of the Agency for Healthcare Research and Quality (January 2004). The report stated that poor health literacy was strongly associated with higher rate of hospitalization and a greater use of emergency services. It reviewed a large number of studies that found a poorer outcome among low health literate individuals for a variety of diseases and measures like use of health care services, screening for sexually transmitted diseases, cancer screening, immunization, smoking, contraception, breast-feeding, alcohol abuse, HIV treatment, depression, hypertension, diabetes and post-operative care. Regarding health literacy, it appears that in order for individuals to make informed and appropriate health-related decisions, they need to have the capacity to access, understand and use health information for better disease management. Williams, Baker, Parker & Nurss (1998) examined the relationship between functional health literacy level and knowledge of chronic disease and treatment in patients with hypertension and diabetes and evaluated the relationship of patients’ literacy levels to knowledge of their chronic disease and markers of disease control through a cross-sectional survey. The authors found that poor health literacy was associated with less knowledge and less understanding of chronic illness and that inadequate functional health literacy posed a major barrier to educating patients with chronic diseases and emphasized the need to understanding the role of functional health literacy in disease management and patient education should enhance efforts to improve patients’ knowledge of their disease and adherence to treatment plans. Additionally the results of their study confirmed that the low literate patient could not fully comprehend medical advice using standard patient education materials, and their study found that patients with marginal and inadequate literacy were older than patients with adequate literacy among both patients with hypertension and diabetes, this led to their conclusion that inadequate functional health literacy posed a major barrier to educating patients with chronic diseases, and that current and existing efforts to overcome this appear unsuccessful. Gazmararian, Williams, Peel & Baker (2002) sought to explore the relationship between health literacy and knowledge of chronic disease among Medicare managed care patients with asthma, diabetes, congestive heart failure, and/or hypertension. In the original study, a total of 3260 individuals completed a 1-hour in-person interview between June and December 1997, and after excluding some participants, the final sample size for the study analysis included 653 Medicare managed care enrollees who had asthma (n=115), diabetes (n=266), congestive heart failure (n=166), and/or hypertension (n=214) and all who completed the key questions (e.g. knowledge of disease and health literacy). The primary independent variable they examined was health literacy, which was measured during initial in-person survey by S-TOFHLA, this uses actual materials that patients might encounter in a health care setting and consists of two parts, a 36-item reading comprehension and a 4-item numeracy section using actual hospital forms and labeled prescription vials. The study revealed that health literacy level proved to be an independent predictor of patients’ knowledge of their chronic illness even after controlling for age, disease duration, and prior attendance at a disease-specific education class, and thus the results found a relationship between health literacy and knowledge of chronic disease. However, even though the study revealed some correlation in their data, the study failed to determine the exact relationship between health literacy and knowledge of disease. DeWalt. Berkman., Sheridan., Lohr and Pignone (2004) sought a system review of the literature to review the relationship between literacy and health outcomes. The authors searched MEDLINE, Cumulative Index to Nursing and Allied Health (CINAHL), Educational Resources Information Center (ERIC), Public Affairs Information Service (PAIS), Industrial and Labor Relations Review (ILLR), PsychInfo, and Ageline. They searched these data bases for the period of 1980 to 2003. The authors included observational studies that reported original data, measured literacy with any valid instruments, and measured one or more health outcomes. Two abstractors reviewed each study for inclusion and any disagreements were resolved by discussion, one reviewer abstracted data from each article into an evidence table; the second reviewer checked each entry, both data extractors independently completed an 110item quality scale for each article; scores were averaged to give a final measure of the article quality. The researchers reviewed 3,015 titles and abstracts, they pulled 684 articles for full review and 73 articles met the inclusion criteria, and of those 73, 44 addressed the question of Literacy and Health Outcomes. The results showed that, patients with low literacy had poorer health outcomes, including knowledge, intermediate disease markers, and measures of morbidity, general health status, and use of health resources. The authors found that the average quality of the articles was fair to good with most studies being cross-sectional in design, yet many failed to address adequately confounding and the use of multiple comparisons, which led to their conclusion that low literacy is associated with several adverse health outcomes and that future research using more rigorous methods would better define these relationships and hopefully guide developers of new interventions. Taken as a whole, knowing how to seek medical care and choosing a healthy lifestyle while taking preventive measures requires that people understand and use health information to enable them to make informed decisions while understanding not just the healthcare system and services, but their treatment as well. Future research should replicate these findings in more natural settings with different populations, age groups and stage of illness. Health Literacy and HIV/AIDS Hicks, Barragan, Franco-Paredes, Williams and del Rio (2006) carried out a study to verify the association between knowledge about AIDS and health literacy. They prospectively enrolled patients visiting an inner-city public hospital’s urgent care center in the study. They used the Rapid Estimate of Adult Literacy in Medicine (REALM) scale with a 22-item questionnaire about HIV/AIDS. More than half of their respondents (55%) were under the age of 40 years. Out of a total of 372 individuals surveyed, 25% had a REALM score at or below 6th grade while about a third of the individuals were high-school dropouts. The knowledge score regarding HIV/AIDS differed significantly between those with inadequate and those with adequate health literacy, with the REALM score being positively correlating with HIV/AIDS knowledge. Kalichman et al (2000) tested the hypothesis that poor health literacy is associated with less knowledge and understanding of one’s own HIV-disease status and negative perceptions of provider communications, the authors further examined the relationship between health literacy and misperceptions of antiretroviral therapies. The study measured health literacy using the reading comprehension scale of the Test of Functional Health Literacy in Adults (TOFHLA) and found that eighteen percent of the sample scored below the cutoff for marginal functional health literacy, and while controlling for years of education, the authors found that persons of lower health literacy were significantly less likely to have an undetectable HIV viral load, and less likely to know their CD4 cell count and viral load, and for those that knew their CD4 count and viral load were found to not fully understand their meaning. The study further revealed that lower health literacy was also related to misperceptions that anti-HIV treatments reduce risks for sexually transmitting HIV and beliefs that anti-HIV treatments can relax safer-sex practices. The study results found implications for patient education and treatment programming for people who have poor health literacy skills and are living with HIV/AIDS and that poor health literacy creates barriers to fully understanding one’s health, illness, and treatments which led to the authors concluding that misperceptions of treatment in the case of HIV infection creates danger for potentially transmitting treatment-resistant strains of HIV. Kalichman and Rompa (2000) examined the association between literacy and demographic characteristics, health status, HIV-related health awareness and understanding, disease and treatment related knowledge, and barriers to care. The authors tested the hypothesis that poorer health literacy is associated with health status, awareness and understanding of one’s HIV disease status, and HIV disease and treatment-related knowledge, they also noted that while illiteracy is multidimensional and a multilevel problem, they narrowed the scope of the study by focusing on functional health literacy in relation to health outcomes. Participants included 227 (67%) men, 107 (32%) women, and 5 (1%) transgendered persons living with HIV/AIDS. The study participants completed all study measures in a single session and all measures other than the literacy test were administered in interviews for those who could not read. Health literacy was assessed using the reading comprehension scale of the Test of Functional Health Literacy in Adults (TOFHLA), and demographic and health status characteristics were collected to assess awareness and understanding of HIV-related health status, the participants were asked whether they knew their most recent CD4 cell count and Viral load. HIV disease and treatment-related knowledge was measured using a 14-item instrument that included basic knowledge of HIV disease processes, transmission, risks, medications, and viral load, and finally, in regards to health care perceptions and experiences, participants were presented with seven situations that can interfere with medical care and were asked to indicate which they personally encountered while receiving medical care for HIV. The study revealed that comparisons of health literacy groups, controlling for years of education, showed that persons with lower health literacy endorsed significantly more negative perceptions and experiences related to HIV/AIDS care, they also found that none of the other differences were statistically significant, and these were also unchanged after controlling for participant income level. Thus the authors concluded that the ability to read and comprehend simple medical instructions is essential to engage patients successfully in their medical treatment, particularly treatment for chronic conditions. Thus persons with limited health literacy skills make greater use of services designed to treat complications of disease and less use of services designed to prevent complications. Why is treatment adherence important for HIV/AIDS? HIV infection can be treated with antiretroviral therapy (ART) with a moderate degree of success. Various combinations of drugs are used to control and decrease the virus population in the bloodstream. Shor-Posner etal (2000) showed that ART helped improve the quality of life of AIDS patients while Pradier etal (2001) demonstrated that proper adherence to the treatment regime did increase the life-span of AIDS patients. Adequate treatment adherence is now standardized as intake of 80-90% of the prescribed medicines. (Bangsberg, 2007; Parienti, 2008). Amongst the several factors that are responsible for treatment failure, non-adherence to ART is one of the most important ones. Non-adherence to ART can be due to several reasons. These include the side-effects of the medicines, the stigma associated with AIDS, depression, substance abuse, lack of social support and last, but not the least, health illiteracy. Health Literacy and HIV Treatment Adherence Kalichman, Catz and Ramachandran (1999) examined the association between literacy and treatment adherence in African-American adults with HIV/AIDS. They selected this sub-group of population because African-Americans are affected disproportionately with AIDS. They enrolled 85 men and 53 wormen receiving ART. They documented parameters like health literacy (using the TOFHLA scale), age, years of education completed, ethnicity, gender, sexual orientation, health status (symptoms, year of testing positive, most recent CD4 count and viral load), treatment status and adherence, perceived barriers to treatment, depression (using the Beck Depression Inventory), emotional distress (using the Brief Symptom Inventory), optimism (using the Beck Hopelessness Scale) and perceived social support. They found that 29% of the respondents were classifiable as low education-literacy (either not having completed twelve years of education or scoring low on the Test of Health Literacy for Adults). The low literacy group was more likely to have poor treatment adherence as compared to the high literacy group (48% versus 22%). Depression, emotional disturbance, poor optimism, and perception of less social support were also significantly more likely in the low literacy group. This group also faced more barriers in accessing HIV/AIDS treatment than the high literacy group. The authors concluded that HIV treatment programs much include strategies to improve health literacy or design programs in such a way that adherence is encouraged in the limited literacy group of population. In another study carried out in 1999 by the same authors, the association of health literacy with other predictors of HIV treatment adherence was tested. The participants were 138 men and 44 women who were HIV sero-positive and on ART. They measure three sets of parameters: (a) health literacy (using the TOHFLA scale), (b) health and treatment status and adherence, and (c) factors influencing adherence, including substance abuse, emotional distress, perceived social support and attitude towards primary care provider. They found that non-adherence was associated with lower education levels, minor ethnicity, less social support, greater emotional stress and poorer disease status. Significantly, those with less than 12 years of education were over 3 times more likely to be non-adherent than those with at least a high school education. Respondents with higher reading ability were 4 times less likely to be non-adherent than those with poor ability. Lower health literacy was directly co-related to lower education literacy. Interestingly, the study showed that for persons with poor education-literacy (less than 12 years of education), the relation between health literacy and treatment adherence was not significant while it was significant for the adequate education-literacy subjects. The reasons for non-adherence were also different. The poor health literacy group was more likely to be non-adherent due to confusion, after experiencing side-effects of the drugs and depression than the higher health literacy group. The authors concluded that poor health literacy was a strong determinant of HIV treatment adherence. To improve their treatment adherence, therapeutic programs must adopt special means including easy-to-understand pictorial displays of medication, illustrated instructions of what medicines to take and when and better means of instructions, e.g. videotapes rather than pamphlets. Perception of what is adequate treatment adherence may also differ depending on the level of health literacy. Graham, Bennett, Holmes and Gross (2007) used a tool specifically created by an expert panel to test the medication beliefs, including what can be considered as the norm for adequate treatment adherence amongst a group of HIV positive subjects on ART and tested their association with literacy and actual adherence. The perceived norm, though faulty, of adequate adherence was strongly associated with actual non-adherence and the prevalence of this perceived norm was higher in the poor health literacy sub-group. According to research conducted by Kalichman, Benotsch, Suarez, Catz & Miller (2000), they found that poor health literacy was associated with poor adherence to anti-HIV medication regimens as well as poorer immune functioning. Functional health literacy and chronic diseases, especially in HIV treatment in health promotion is an important concept in patient education and disease management. Kalichman etal (2010) believed that rather than relying on self-reported treatment adherence, use of objectively measure treatment adherence would help establish a more accurate relationship between heatlh literacy and medication adherence. Hence, 145 subjects on ART were asked to submit to a test of health literacy and measures of treatment adherence markers. Demographic data like age, years of education completed, income, ethnicity, disease status and employment was obtained. The Test of Functional Health Literacy in Adults (TOFHLA) was used to measure health literacy. Objective measurement of treatment adherence was obtained by unannounced pill counts. They also measured the emotional distress using the Centers for Epidemiological Studies Depression Scale (CESD). The sample of the study was predominantly African-American (93%). Less educated people were more likely to have low health literacy. After adjusting for other factors contributing to non-adherence like emotional disturbances, perceived social stigma, lack of social support and substance abuse, low health literacy was found to be an independent contributory factor for treatment non-adherence. To find out whether social stigma is a mediator to the relationship between literacy and HIV treatment adherence, Waite, Paasche-Orlow, Rintamaki, Davis and Wolf (2008) carried out a study among patients being treated at infectious diseases urban centers in two cities. A total of 204 HIV-infected patients on ART participated. Exclusion criteria included patients on treatment for less than 2 weeks, and patients having dementia, blindness or severely impaired vision, hearing deficit or those too ill to participate. Medication adherence was assessed using the low literacy accessible version of the Patient Medication Adherence Questionnaire (PMAQ). Their sensitivity to HIV-related stigma was judged based on three items of the PMAQ related to problems associated with treatment adherence. The three statements were “I am embarrassed to get my medicines from a drug store”, “I don’t want people to see me take my HIV medicines” and “Taking my medicines reminds me that I have HIV”. Participants responded to these three statements on a three-point scale. The literacy levels were classified using the REALM (Rapid Estimate of Adult Literacy in Medicine) scale. The results of the study showed that about a third of the patients had limited literacy skills. Patients with low literacy were more likely to be African-Americans, lower educated, male and employed but uninsured. About 52% patients of low literacy rate reported non-adherence to the treatment regime. Non-adherence was also more likely amongst patients with moderate or high levels of concern regarding social stigma that those with low concern. Further statistical analysis revealed that high social stigma concern is a strong predictor for low treatment adherence among patients with low literacy. Is low health literacy an absolute predictor for treatment non-adherence or are there other factors among low health literacy groups that have a modifying effect? To find out the answer, Kalichman and Grebler (2010) studied 188 men and women with poor health literacy and HIV/AIDS. The inclusion criteria for the study were age equal to or more than 18 years, documented HIV positive status, current ART prescription and score of less than 90% on the TOFHLA scale. Demographic data and health status was recorded and treatment adherence was assessed. Factors affecting treatment adherence like mental confusion, emotional distress and perceived social stigma were measured using appropriate tools. Other factors like HIV-related health and social stressors and poverty experiences were also recorded. They found that among this group of poor health literacy HIV/AIDS patients, non-adherence was strongly associated with depression, greater internalized stigma regarding AIDS, drug abuse, greater severity of health and social stressors, poverty and food insecurity. This study raises the question whether simply improving health literacy is sufficient to improve treatment adherence in HIV/AIDS. It suggests that improvement would be required on multiple fronts, including emotional and social support, removing the stigma associated with HIV/AIDS, improving the overall health of these patients and economic aid. While, based upon research, strategies commonly used to increase patient adherence to clinical services, treatments, and medical instructions rely on reading, comprehension skills and verbal comprehension, such as comprehension and retention of medical instructions. All these indicate that methods of patient education must be adapted to the skills and abilities of lower literacy patients. Strategies to improve treatment adherence in low literacy All the studies cited above have established the association between low health literacy and low education literacy and between low health literacy and treatment adherence. Thus, it is clear that to improve treatment adherence in low literacy people, special interventions are required addressing the factors responsible for the poor compliance. A few studies have addressed this issue. Similarly, Jolly, Scott and Sanford (1995), carried out a survey whether giving the emergency department discharged patients simplified instructions improved their understanding of these instruction. For the purpose of the study, they tested the patient understanding of the standard discharge instructions. Then, they simplified the existing standard instruction template. After going through the new set of instructions, the second group of patients were asked five specific questions. The responses of the two groups were compared. They found that the second group (with simplified instructions) had much better comprehension of the discharge instructions that the control group. However, when techniques designed to increase treatment adherence rely on reading skills, those with low literacy wrongly interpret such instructions frequently and many a times do not act upon these instruction. (Doak, Doak and Root, 1996). Moreover, some interventions act as reminders of timing of the dosage of medicine. But typically, patients are taking more than one type of pills and tend to get confused about which pill is to be taken when. Hence, behavior modification strategies for low literacy individuals have to be specifically designed to match their comprehension levels. Jacobson etal (1999) tested the efficacy of a simple, low-literacy educational tool in improving pneumococcal vaccination among visitors of an ambulatory care center of an inner-city public hospital in a randomized controlled trial. The tool consisted of a single page educational pictorial hand-out designed for below fifth-grade educational level. They found that use of this tool significantly increased the immunization rate among the low literacy subjects. This was further corroborated by Mayeaux etal (1996) when they established the premises that a combination of simply written patient education matter reinforced with verbal instructions improves comprehension among patients with low literacy. They concluded that for these patients, effective material is one that is brief, easy to understand, is culture specific, pictorial based and stimulates the behavior required. Involving the immediate family members in this exercise also has a salutary effect on treatment adherence. As Rabkin and Chesney (1999) pointed out, strategies generally used in programs to reduce HIV treatment non-adherence include education material regarding the dangers of non-adherence and the benefits of adherence, teaching the patients methods of memory cues regarding timings of dosages and the use of alarms and other cues obtained from immediate surroundings. These aids do depend to some extent on the subject’s reading skills, general intelligence and memory retentive capacity, which may be sub-optimal in the poor health-literates. It was precisely this concern that prompted Kalichman, Cherry and Cain (2005) to design a nursing intervention specifically for people with low literacy to enhance adherence in patients with HIV/AIDS. The interventions consisted of three sessions of interactions with the patient dealing with three areas of behavior. The first session dealt with improving the subject’s understanding of HIV and its treatment. The second session dealt with the individual health and medication regime, the timing and number of pills the subjects had to take, consideration of the factors likely to promote and inhibit adherence and ways to circumvent the deterrents. This was finally followed by a booster session to reinforce and promote treatment adherence. All the materials used were pictorial based, with minimum words and aids were used to help the subjects remember the timing of the doses as well as what doses were to be taken. It was discovered that post-intervention, knowledge about the disease and its treatment, treatment adherence and motivation had significantly improved in the subjects. HIV is known to have a higher prevalence among some minorities, including African-Americans and Latinos. Tailoring the programs for enhancing treatment-adherence keeping cultural, linguistic and ethnic sensibilities in mind is paramount for their success. This was borne out in two studies that documented the success of a treatment adherence enhancement program specifically for Latinos. (van Servellen, 2003; van Servellen, 2005). Thus, our literature search shows sufficient evidence to document the relationship between health literacy and HIV/AIDS treatment adherence. Various factors that modify this association have also been studied. However, there is a dearth of material on interventions and program modifications to improve treatment adherence in the poor health literacy subset of subjects with HIV/AIDS. References American Medical Association. (1999). Health literacy: report of the Council on Scientific Affairs. Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs, American Medical Association. JAMA: Journal of the American Medical Association,. 281, 552-557. Baker DW, Gazmararian JA, Williams MV, Scott T, Parker RM, Green D, Ren J, Peel J. (2002). 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