Glaucoma is expected to occur in 60.5 million people worldwide by 2010.1 Recommended management of glaucoma typically includes the use of medication(s) and the regular attendance of follow-up clinic visits, including visual field analysis, to monitor medication efficacy, and disease progression. The benefits of lowering intraocular pressure by medications and surgical intervention to reduce the risk of glaucoma development and progression are well established.2–5 However, patient adherence to glaucoma treatment regimens is often suboptimal.
Treatment adherence is a complex behavior6 that is influenced by many factors. To date, most glaucoma adherence studies have focused on use of medications, mainly eye drops.7–11 Fewer studies have identified factors that account for poor adherence to recommended follow-up medical visits.12–14 Barriers to glaucoma treatment adherence can be divided into 4 categories: provider factors, situational/environmental factors, medication regimen factors, and patient factors.15
The patient-provider relationship and communication has been noted as a potential barrier to adherence in studies of glaucoma.16 Issues of trust17 and communication18 are especially important.
The number of medications, the number of doses of each medication, and the specific instructions for medication taking have all been used to represent medication regimen complexity. Findings regarding the role of regimen complexity are mixed. Higher daily dose frequency, especially of more than 2 administrations per day, is usually associated with increased glaucoma medication nonadherence.16,19–21
Side effects also pose barriers to glaucoma medication adherence,22 and may be related to discontinuation of therapy altogether.12 The cost of glaucoma medications has been cited as a medication adherence barrier in most17,21,23,24 but not all18 available studies.
Evidence regarding the relationship between demographic factors such as race/ethnicity, sex, socioeconomic status, education, family history and age, and glaucoma treatment adherence is largely inconsistent. Ethnic disparities in adherence to glaucoma treatment or glaucoma awareness are often, but not always, noted.14,18,20,21,25–27 These associations may be confounded with education and socioeconomic status20,26 which are often lower among African American patients.
Older patients may exhibit poor glaucoma treatment adherence due to difficulty reading prescription labels,16,24,28 comprehension and remembering,18,21,24 and manual dexterity and coordination.23,24,29,30 Data regarding gender differences in glaucoma adherence are inconsistent.
Nonadherent glaucoma patients are more likely to have impaired visual acuity or partial vision loss.16,24,28 Physical challenges in self-administering drops are commonly cited barriers to glaucoma adherence.22,24,28,30
The most pervasive cognitive factor influencing adherence is forgetfulness.19,21,22,24,30–33 Other psychosocial factors that may influence glaucoma treatment adherence include beliefs and attitudes, self-efficacy, and social support. Lack of perceived benefit of treatment or satisfaction with treatment has been consistently associated with lower self-reported adherence.22,34 Practical and emotional supports may be important facilitators in treatment adherence.6 Such supports might include physical assistance with medication management, as well as help with remembering, obtaining refills, and transportation to the pharmacy or clinic.
Clearly, glaucoma treatment adherence is influenced by a variety of factors. Much of the available evidence is based on studies that lack objective measures of adherence and did not study medical appointment adherence. The purpose of this study is to advance providers' understanding of the factors that influence glaucoma treatment adherence with medication taking, prescription refills, and appointment keeping as assessed through chart notes, medical/pharmacy records, and interviews. By comparing the responses of patients identified as adherent or nonadherent, this exploratory research will also stimulate the development of an intervention to improve glaucoma treatment adherence.
PATIENTS AND METHODS
Study participants (N=80) were patients recruited from 2 eye clinics located in hospitals in the Southeast United States: a Veterans Affairs (VA) hospital and a large public hospital. Both of these hospitals offer subsidized onsite or mail-order pharmacies, making pharmacy records available for nearly all prescriptions. Eligibility for study inclusion required that all participants: were between the ages of 18 to 80; white or African American; had a telephone; spoke and understood English; were diagnosed with open-angle glaucoma, glaucoma suspect, or ocular hypertension; and were taking daily doses of topical glaucoma treatments for at least the past year. Participants who had eye surgery within 3 months of the date of medical chart review were excluded. While acuity and visual fields were not recorded, participants had to have sufficient corrected or aided vision to read and sign the informed consent and Health Insurance Portability and Accountability (HIPAA) authorization form on their own. The study received approval from the University Institutional Review Board and the respective research oversight committees of both participating hospitals.
Participants were recruited in 2 ways. Initially, flyers describing the study were placed in the eye clinics. Interested participants either approached study staff in waiting rooms or called the phone number listed on the flyer. Participants were screened for eligibility after signing a combined informed consent and HIPAA authorization form. If screening questions suggested eligibility, participants were interviewed and a medical chart review was conducted to confirm treatment and diagnosis. Medical chart review consisted of abstracting administrative and medical record data on adherence, including prescription medication-taking behavior, prescription renewals, and clinic appointments. This strategy resulted in the recruitment of few nonadherent individuals, so recruitment strategies were modified to obtain a more diverse sample.
With a Partial Waiver of HIPAA authorization, administrative clinic data were used to identify glaucoma patients who had missed at least 1 clinic appointment in the last year. For those patients, a medical chart review was conducted to screen for eligibility. Potential participants were then contacted by mail and then phone, and interviews were arranged after participants signed the combined informed consent and HIPAA authorization form.
Interviews were conducted by trained research assistants between April and December 2007. Participants were interviewed either over the telephone or in-person at a private room in each eye clinic.
Interviews included questions about background characteristics of the patient and open-ended questions about the participant's eye condition, prescription medication usage, facilitators and barriers to medication adherence, refill and clinic visit behavior, medication knowledge and health literacy, as well as psychosocial factors such as self-efficacy, attitudes, and social support. Interviews lasted from 30 to 90 minutes, depending on the number of medications being taken. Interview responses were reviewed for common themes and organized into coding categories. All interviews were coded by 2 raters independently. In cases of disagreement, the coders met to resolve discrepancies, and if necessary, a third independent coder settled disputes.
The primary comparisons made were between adherent and nonadherent patients. Patients were identified as adherent or nonadherent with their glaucoma treatment through self-report and medical chart/pharmacy data on medication taking, prescription refills, and clinic appointments. Participants were considered nonadherent with taking medication if there was both a physician note about nonadherence and a self-report of missing at least 1 dose of medication in a week. Refill nonadherence was defined as failing to refill any glaucoma medication in a timely manner, classified by a pharmacy record indicating at least 1 month lag in refill time, and a self-report of running out of medication before getting a refill. Participants were considered nonadherent with appointment keeping if a review of clinic records and self-report revealed any clinic appointments missed in the past year. If a participant was nonadherent with medication, refills, or clinic appointments they were classified as nonadherent with respect to glaucoma treatment.
All statistical analyses were performed using SPSS 15 for Windows. Cross-tabulations, Pearson χ2, and Fisher exact tests were computed. Given the small sample size, as well as the large number of tests conducted, the focus is more on substantive differences rather than statistical significance. However, P values are reported at the P<0.10, 0.05, 0.01, and 0.001 levels. Findings reported here focus on issues related to provider, medication, and patient factors that were: (1) mentioned by the largest number of respondents; and (2) that, based on the literature, would be most likely to reveal differences between adherent and nonadherent individuals.
Forty participants were recruited from each study site, for a total of 80 participants. Table 1 summarizes demographic information by study site. There was no significant age difference by study site; overall, the average age of participants was 62.6 years (SD=10.2). There were significant differences in gender, race, and education by site. At the VA hospital, 95% of participants were male, compared with 30% at the public hospital. The majority of participants at both sites were African American; 100% of the public hospital and 85% of the VA hospital sample was African American. Finally, the VA sample tended to be more educated: 65% of VA participants had completed at least some college, compared with only 25% of the public hospital participants.
Sixty percent of the sample was classified as nonadherent, split evenly across study sites. Of those who were nonadherent, 67% (N=32) were nonadherent with respect to using their medicine as prescribed, 50% (N=24) were nonadherent with respect to refills, and 29% (N=14) were nonadherent with respect to appointment keeping.
Table 2 shows comparisons between adherent and nonadherent participants on key dimensions believed to influence adherence.
A large majority of both adherent (93.8%) and nonadherent (95.8%) participants trusted their eye doctors most to give them information about their eyes. However, nonadherent individuals were less likely to believe that their eye doctors spent sufficient time talking with them about their eye condition: only 72.7% of nonadherent participants felt ample time was spent with the doctor, compared with 93.8% of adherent individuals (P<0.05). Further, there was a trend (nonsignificant) showing that compared with adherent participants, nonadherent individuals were less likely to report that they would ask their eye doctor (83.3% vs. 96.9%) or pharmacist (25.0% vs. 43.8%) if they had any questions about their eye medications.
There did not appear to be any differences in adherence with respect to regimen complexity. Adherent and nonadherent individuals were equally likely to be taking other medications, to have had their prescriptions changed by their eye doctor, and to be taking the same average number of glaucoma medications. Similarly, nonadherent participants were no more likely than adherent individuals to mention side effects of glaucoma medications as a barrier to adherence.
Several patient factors were examined, which were grouped into the following categories: information seeking and comprehension; physical challenges; remembering; attitudes; social support; and self-efficacy/control beliefs (or confidence in adhering to the prescribed treatment).
Information Seeking and Comprehension
There was no difference in information seeking by level of adherence. Approximately half of all participants reported looking for information about their glaucoma. Although the difference was not statistically significant, nonadherent participants were somewhat less likely than adherent individuals (75.0% vs. 90.6%) to feel that they understood all the information they had received about their eyes. Similarly, nonadherent individuals were slightly less likely to report reviewing the information that comes with their eye medications (70.8% vs. 84.4%).
Although not statistically significant, 22.9% of nonadherent participants, compared with only 9.4% of adherent individuals, stated that a barrier to medication taking was difficulty with the proper administration of drops. Administration issues included getting the proper number of drops into the eye and difficulty squeezing the bottle.
Memory was significantly associated with medication-taking and was also a potential factor influencing appointment keeping. Approximately 56% of nonadherent participants cited scheduling issues, such as remembering when to take their medications, to be a barrier to medication-taking, compared with only 18.8% of adherent participants (P<0.001). Similarly, 43.8% of nonadherent patients cited forgetting, having the wrong date, or other scheduling conflicts as a reason for missing appointments (P<0.05), compared with only 18.8% of adherent participants. Adherent and nonadherent individuals were equally likely to mention reminder systems as a facilitator to adherence for both medication-taking and appointment keeping.
When asked about the benefits of taking their medication regularly, adherent and nonadherent individuals did not differ in their responses regarding whether medication would help to reduce pressure, control glaucoma, prevent blindness, or provide immediate symptom relief. Across all participants, few (12.5%) stated that they did not believe there were benefits; but more nonadherent patients than adherent patients indicated that they did not know of any benefits to taking their medication regularly (20.8% vs. 3.1%, P<0.05). Similarly, while there were no differences in reported “downsides” to taking medications in terms of inconvenience, nonadherent individuals were less likely to state that there were no downsides at all to taking their glaucoma medications (50.0% nonadherent vs. 75.0% of adherent respondents, P<0.05). Importantly, when asked a direct question regarding medication efficacy, nearly all participants (89%), regardless of adherence, believed that taking their medication regularly would prevent or reduce loss of vision.
There was some evidence that social support may facilitate adherence in these patients. Only 4.2% of nonadherent individuals reported that having someone to help them made it easier to adhere, compared with 18.8% of adherent participants (ns). When asked a similar question regarding appointment keeping, there was no difference in responses: approximately 24% of participants reported that having someone to help, in ways such as driving them to or reminding them about their appointment, made it easier to keep clinic appointments. When specifically asked if anyone had ever helped with their glaucoma, about 65% of participants across both groups reported receiving help. However, when asked about how people had helped them, some differences between nonadherent and adherent participants emerged. Compared with adherent individuals, nonadherent individuals were less likely to report receiving help with medication administration (8.3% vs. 25.0%, P<0.10), or with being driven to clinic appointments (29.2% vs. 53.1%, P<0.05).
Participants were asked how they felt about having glaucoma, and how it affected their daily lives and their future. There were few differences in responses based on adherence. While some participants expressed negative emotions, such as anger (29% of the overall sample), fear (13.8% of the overall sample), or sadness (13.8% of the overall sample), the most common response was one of neutrality: 32.5% of respondents did not report any emotional response to having glaucoma; they were not bothered by it. When asked how it affected their daily lives, there was a nonsignificant trend for nonadherent participants to report glaucoma affecting their daily tasks more than adherent participants (54.2% of nonadherent individuals vs. 37.5% of adherent individuals). Finally, nonadherent individuals were significantly more likely to believe that in the future, glaucoma would affect their eyesight (22.9% of nonadherent participants, vs. 3.1% of adherent participants, P<0.05).
This article reports on a study of 80 predominantly African-American glaucoma patients, using data from medical sources (charts, appointment records, and pharmacy records) along with in-depth interviews to explore factors associated with 3 dimensions of treatment adherence.
The findings are generally consistent with the literature. One contrary finding was that, in contrast to several other studies,16,19–21 regimen complexity did not appear to be associated with adherence in our sample. However, we believe this may be due to an insensitive measure; the measure we used captured whether or not participants were taking other prescription medications and did not include frequency or method of dosing. A more sensitive measure may have revealed differences in adherence based on medication regimen complexity.
In our study, nonadherent individuals were more likely than adherent patients to believe that glaucoma would affect their eyesight in the future. Perhaps this was because non adherent individuals knew that they were not taking their medication properly and understood that this could affect their vision. In contrast, adherent patients were less likely to believe their future vision would be affected because they were taking steps to control vision loss. Alternatively, perhaps nonadherent patients were more fatalistic, and did not believe that glaucoma medications would prevent vision loss, while adherent patients were more optimistic. More research is needed to better understand this difference.
In our study, patient-provider communication but not trust appeared to play a role in nonadherence. While most patients trusted their physicians, nonadherent patients were less likely than adherent individuals to believe that their eye doctors spent sufficient time with them, and were also less likely to ask their eye doctor if they had questions. Thus, particularly for nonadherent patients, providers may need to be sensitive to the need for establishing a rapport with patients such that patients perceive a willingness to communicate and feel comfortable taking the time to ask questions.
As in previous studies we found that challenges with administering eye drops are issues of concern.22–24,28,30 Memory, which has also been a well-documented barrier to adherence,19,21,22,24,30–33 influenced our nonadherent participants' ability both to take their medicines and to make their clinic appointments. A lesser documented factor influencing glaucoma adherence is social support.6 In our study, instrumental support appeared to influence both medication and appointment adherence; however, the particular determinants were different. The instrumental support for appointment keeping was having someone to drive the patient to an appointment, whereas the social support associated with medication adherence had to do with providing assistance administering medications. This suggests the utility of distinguishing between different aspects of glaucoma treatment adherence; if the determinants are different, then the particular messages and strategies for interventions developed to increase glaucoma treatment adherence would also need to be different.
While most patients, even the nonadherent respondents, stated that they felt they understood all the information they had received about their eye health and glaucoma, knowledge about treatment appeared to be higher among adherent participants: nonadherent individuals were more likely to be unaware of any benefits to taking glaucoma medication regularly.
An important issue that emerged in the early stages of this study was that adherent patients were more likely to volunteer to take part in the research. This may be due to their greater likelihood of being at the clinic sites, that adherent individuals are more eager to discuss their condition, or both. In the study reported by Tsai et al15 most study participants did not acknowledge nonadherence. The use of medical record sources of information in our study was important for identifying nonadherence that patients might be reluctant to report.
There are limitations to this study as to all research. The sample size is modest though larger than in some related studies.15,18 Because of the small sample size, we only examined the broad category of nonadherence to glaucoma treatment regimens and could not examine differences in nonadherence with medication taking, refills, and appointment keeping. Future research should consider these distinct forms of nonadherence. There were variations in our recruitment and interviewing methods that could have potentially introduced bias to our sample. We did not screen for cognitive impairment; however, 2 mechanisms were in place to reduce the likelihood of data being utilized from an individual suffering from cognitive impairment. First, as the rate of cognitive impairment increases with advanced age,35,36 we limited respondents to 80 years-old or younger. Second, interviewers were trained to recognize cognitive impairment and were instructed to terminate interviews from individuals believed to be cognitively impaired.
Our sample was not representative of all glaucoma patients. Our sample was drawn from a VA Hospital and a public hospital. Participants were relatively homogeneous: mostly African American and male, with low socioeconomic status. Our sample was drawn from the same population that will ultimately be the focus of our intervention. Nevertheless, while not representative, this population may be at greater risk for uncontrolled glaucoma complications and subsequent visual impairment,26,27,31,37 so the present research fills an important gap in the literature.
This in-depth qualitative analysis and comparison of adherent and nonadherent glaucoma patients has implications for healthcare policy as the aging population increases and as treatment adherence potentially becomes an increasingly challenging and costly problem. This research also provides important information to guide the development of interventions to improve glaucoma treatment adherence. We will use these data to help with the development of an automated, interactive, and tailored telephone intervention designed to increase adherence to glaucoma treatment. This information could also be useful for other types or models of intervention.
The authors thank the contributions of Carolyn Drews-Botsch, Mary Lynch, Nancy Marencin, Jessica Wold, and Alma Nakasone.
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