Our results demonstrate that many HIV-infected patients are unable to recall their current ARV regimen completely and accurately and also are unable to recall ARVs taken in past regimens. This is particularly concerning since a complete knowledge of previous ARV medication regimens a patient has received is essential for informing which ARVs and regimens a patient may respond to and tolerate in the future.
Previous studies of patient recall accuracy demonstrated sensitivities between 44% and 93%; however, these studies focused on classes
of medications such as 3-hydroxy-3-methylglutaryl-coenzyme A (HMG-CoA) reductase inhibitors, anti-hypertensives, non-steroidal anti-inflammatory agents, and hormone replacement therapy and not on individual medications.19–22
Our sensitivities of 63% and 18% suggest that HIV-infected patients may have more difficulty successfully recalling ARVs than patients taking other classes of medications such as anti-hypertensives and hormone replacement therapies, which tend to be single drug regimens.
We found that the number of ARVs a patient receives or has received in the past influences their ability to accurately recall ARVs prescribed. This observation is expected as each new drug added to the treatment armamentarium leads to additional complexity in an individual regimen, generating more information that an HIV patient must remember. This is particularly important as the number of available ARVs and ARV classes continues to increase over time. It is likely that our findings are generalizable to other patients and clinical conditions. Polypharmacy is common in treatment of the elderly and of other disease states,25–28
and the inability to accurately recall current medications or a medication history is likely a problem in these patient populations as well.
Previous studies among HIV-positive patients have found that patients with low health literacy and little HIV therapy knowledge are less likely to accurately identify ARV medications.14,15,29,30
Furthermore, medication knowledge affects a patient’s ability to adhere to medications. For example, Miller et al
demonstrated that a better medication knowledge score was significantly associated with better adherence to ARVs at 8 weeks. However, this was not seen at weeks 24 and 48 suggesting that knowledge is just one of many factors that influence patients’ adherence to ARVs.15
While we did find that patients who maintained a regular medication schedule were more likely to recall their current ARVs and less likely to recall their cumulative ARVs, this association was not statistically significant. Reasons for the observed paradoxical relationship between success at maintaining a medication schedule could be related to behaviors of patients and the design of the interview. Patients who are able to recall all their medications may be more honest about their ability to maintain a schedule and report more difficulty whereas patients who are unable to recall their medications may have greater perceived self-efficacy. We also did not demonstrate a statistically significant association between recall and current HIV RNA level (another marker of adherence). The presence of neurocognitive impairment in conjunction with the complexity and cumbersome nature of medication regimens to treat HIV may lead to difficulty recalling historical medication regimens, further supporting the multi-faceted relationship between knowledge of HIV, recall of ARVs, and adherence. For these reasons there is a need for additional medication reconciliation techniques targeted to all patients who do not rely on patient memory or knowledge of HIV disease.
Our study has a few limitations. We considered the medical record as the gold standard, which is neither a perfect measure of prescription history nor does it indicate if a patient actually received or took the medications prescribed.31,32
Since the medical record may not be completely accurate for patients who transferred HIV care from another facility we also conducted analyses restricted to patients who initiated ART at our site. In these analyses, we did not find a meaningful difference between patients followed entirely at UNC infectious diseases clinic compared to the complete study population. Our study is also subject to recall bias as a patient who experienced an untoward side effect to a medication (e.g., abacavir hypersensitivity) may be more likely to recall that medication over another, resulting in imperfect exchangeability of each ARV. However, we designed our instrument to assist the participants with recall, by including specific ARV drug names (proprietary and generic) and providing photographs of each ARV.33,34
Finally, the selection of patients to complete the in-person interview was not conducted at random. Nevertheless, all patients seen in the clinic that were consented to participate in the UNC CFAR HIV Clinical Cohort study were approached on each selected interview day. Despite the limitations, this assessment highlights the importance of interventions designed to enhance a patient’s awareness of their medications, which will eventually lead to improved outcomes.
Novel tools to assist in medication reconciliation are necessary in order to reduce dependency on patient factors, such as memory and knowledge. These instruments can be provided to patients to maintain a personal record of ARVs and concomitant medications. At the time of this study, the use of medication charts by HIV-positive patients was less common than currently. Their use has continued to increase, however, a more consistent use of these forms with the assistance of technology is needed. Making medication lists quickly modifiable by providers and/or patients, and providing the lists in a format that is easily maintained is important. One example is the use of USB storage devices that can be placed on patient’s key chain, in a pocket, or in a purse and updated at each clinic visit. Another option is a web-based personal health record (PHR). This personally controlled health record could be modified by providers and patients. In this model the PHR is not institutionally based, but compatible with multiple medical records systems. This way a patient can keep information from multiple providers, over time or at various institutions, in one place and directly control sharing of information when necessary. While there are early projects exploring the use of PHRs, there are challenges in implementation to be worked out and much more evaluation necessary before they will be widely available.35
For those patients who prefer, a paper copy of their medications in a pocket size format would be a step-wise approach to the electronic format. Pharmacists and other providers in the clinic could work to ensure each patient has an accurate medication history with updates for patients at each visit. The use of these strategies would reduce the dependency on patient recall for medication history allowing for a more accurate representation of this information in the medical record. Interventions aimed at testing the utility of these tools within the HIV population are needed.
In summary, this study highlights the poor reliability of patient recall in reconstructing HIV medication histories. These findings indicate a need to implement a more consistent and reliable method of determining medication histories as this information is critical to providing safe and effective treatment of HIV.