Abstract
High, persistent levels of antiretroviral therapy (ART) adherence are generally required to achieve sustained virologic suppression. Recently published global guidelines on entry into and retention in care and ART adherence include recommendations for monitoring and supporting ART adherence as a standard part of HIV clinical management. Several tools to facilitate the dissemination and implementation of these evidence-based guidelines are under development. A pocket-size Guidelines Regimen Information Program (GRIP) guide was recently developed as a quick reference tool to summarize high impact, strong evidence-based recommendations and to provide a validated single assessment item for use in collecting self-reported adherence estimations from patients as part of standard clinical care. The tool’s development and intended use are reviewed and additional recommendations provided to facilitate a brief clinician–patient discussion to link patients to appropriate resources, strategies, or programs. Limitations of the tool and scenarios to avoid are also discussed. With a sizable proportion of individuals on ART trying to achieve or sustain sufficiently high rates of adherence, proactive monitoring of ART adherence and linkage of patients to needed resources is a critical component of high-quality HIV care. The quick reference GRIP guide is intended to be a part of a larger package of approaches to identify patients in need of adherence support regardless of current viral load and to help providers link patients with the available resources.
Introduction
Recently published global guidelines on entry into and retention in care and antiretroviral therapy (ART) adherence include recommendations for monitoring ART adherence as well as wide-scale availability of a number of basic education, counseling, and medication management tools. 1 Among the measures of adherence evaluated and recommended, obtaining self-reported adherence from all HIV-positive patients attending clinical care, regardless of their current viral load, was ranked “high” for quality of evidence with the highest level of strength of recommendation (almost all patients should receive the recommended course of action). In making this recommendation, the guidelines’ authors cite data indicating that, while self-reported adherence commonly overestimates actual adherence, 2 it nonetheless reveals nonadherence frequently enough as to be clinically useful. 3
In addition to recommendations for monitoring HIV care utilization as well as adherence, the guidelines include a number of specific recommendations for optimizing these critical behaviors. To facilitate awareness of these recommendations and their implementation in busy practice settings, the International Association of Providers of AIDS Care (IAPAC) recently developed a pocket-size quick reference Guidelines Regimen Information Program (GRIP) guide (Figure 1). The GRIP guide organizes various recommendations into a user-friendly algorithm and identifies a specific adherence self-report item for use with all patients on ART at each clinical care visit. The self-report item is intended to assist clinicians and providers of HIV care in gauging ART adherence and, importantly, guiding patients toward adherence support resources as a part of standard care. This brief report provides some explanation of the selection of the specific self-report item in the GRIP guide and offers additional guidance on its use to maximize the potential benefit of this quick reference tool.
IAPAC GRIP guide.
Obtaining Self-Reported Adherence
Careful testing has been conducted on a variety of self-reported adherence measures that vary considerably in terms of recall tasks, cognitive demand, time frames, and response options. 4 , 5 A wide variety of self-report measures and items have demonstrated significant association with viral load (between 0.30 and 0.60) and electronic drug monitoring data (between 0.30 and 0.55), although they generally have higher specificity than sensitivity. 5 A common rule of thumb is that self-reported “low adherence” is likely to have high accuracy whereas self-reported “high adherence” offers less confidence in accuracy. However, given consistent support for criterion validity and widespread feasibility of collecting self-report in practice, systematic collection of self-reported adherence offers numerous benefits, including the potential for initiating patient–provider discussions about medication adherence. To this end, the GRIP guide offers both assessment and intervention opportunities.
In selecting the self-report item recommended in the GRIP guide, a number of well-demonstrated items were considered; the final selection was guided by both the accumulated evidence base for items associated with objective indicators of adherence and recent work focused on identifying assessment items that have high concordance between the intended question and how people actually understand the question. 4 , 6 Obviously, the more discrepant the intent of the interviewer or provider is from the understanding of the respondent or patient, the greater the opportunity for error and miscommunication.
Recommendations emerging from iterative cognitive testing 6 to identify adherence questions that are consistently and clearly understood by patients on ART include (a) adopting a general recall approach (vs attempts at identifying specific doses missed); (b) favoring a “30-day recall” period (vs other time frames and phrasings such as “past month” or “past 4 weeks”); and (c) framing execution in terms of self-assessed performance (vs ability or percentages). Based on extensive research, Wilson and colleagues 6 recommended the following phrasing: “In the last 30 days, how good a job did you do at taking your HIV medications in the way you were supposed to?” which is a revision to Lu and colleagues’ 7 ability item. In adopting this item for the GRIP guide (see Figure 2), each aspect of the question and response options (a range from Excellentto Very Poor) were carefully considered, including time frame to ask about and specific wording for characterizing execution of a given regimen.
Continuum of actions to support clinician–patient communication based on adherence self-report.
Time Frame
Recall of specific events degrades with increasing time, in part due to memory and also potentially due to cognitive processes that bias people toward remembering intended courses of action over actual ones, especially with high-frequency events. 4 , 5 For items asking individuals to estimate execution more generally, with response options that are generally ordinal, capturing the past 30 days appears optimal. 5 , 7 In the GRIP guide, the item uses “past 30 days” specifically, rather than past month or past 4 weeks. Although past month has intuitive appeal and should numerically represent the past 30 days or so, work in this area has suggested that there is considerable variability in how patients understand the phrase with some assuming that the question targets days passed within the current calendar month or days in the previous but not current calendar month. The past 30 days has less variability in interpretation.
Phrasing the Question
In dissecting the specific self-report question used in the GRIP guide, several important points to using the exact phrasing and the specific response options should be made As previously noted, using the phrase past 30 days is better than “past-month.” Phrasing execution as “how good of a job did you do” is preferred over “how did you do,” “how well did you do,” or “rate your ability.” The latter phrasing has been found to evoke variable understandings of what the clinician is asking for with some understanding that the item is asking for a rating of how one could have done if they wanted to (ability versus actual execution). Asking one to reflect on overall performance while offering several positive response options (eg, “very good” and “good”) appears to decrease the ceiling effect found with other approaches. Note, however, that in using this item in settings outside of the United States, careful attention in translation of the colloquialism of “good job” to a phrase that has the same meaning within other cultures and communities is a priority over literal translation. The item asks patients to reflect their own understanding of how they have been asked or prescribed to take their regimen, rather than asking them to reflect their prescribed or recommended regimen. This wording was specifically selected because, in reality, patients default to their understanding of the regimen which becomes their criteria of how they are “supposed to” take their medications. Using words such as prescribed or recommended created some confusion in cognitive testing of this terminology as it appeared to simultaneously trigger an evaluation of whether or not what you think you are supposed to do is in fact what is prescribed or recommended. Certainly, accurate understanding of what one is being asked to do is critical, but mixing execution assessment with information checks on prescribed regimen can cloud the adherence assessment. Thus, the specific wording of “as you were supposed to” was adopted.
Despite concerns that a self-evaluation item asking about a “good job” taking medications as one was “supposed to” or offering options that include “poor” and “very poor” would produce defensiveness or feel pejorative, cognitive testing of this exact phrasing has amassed support for clarity, consistency, and acceptability. 6 The wording and response option for the self-report item in the GRIP guide is strongly supported by cognitive testing, 6 which focuses on how to ask questions that involve knowledge patients possess, and that patients across wide ranges of literacy, educational background, and attentiveness to medical care can have a consistent understanding with which to respond. As such, the recommendation is to use the item verbatim and to offer patients the specific response options.
Facilitating a Continuum of Action
A key advantage of the GRIP guide is that it moves links monitoring specific courses of action based on evidence-graded guidelines. Specifically, as shown in Figure 2, response options are linked to specific actions for providers to consider ranging from simply providing patients with knowledge and information about resources for adherence support that are available at a clinic or in the community (targeted toward patients reporting excellent adherence) to strong recommendations or “prescribing” specific programs or resources for the patient to become involved in immediately.
In order to facilitate productive conversations emanating from the GRIP guide’s use, we propose several additional steps. These include steps prior to the use of the tool and steps that could efficiently move conversations from response collection to the concrete actions already well described in the GRIP guide.
1. Identify Adherence-Related Resources Available
Prior to use of this tool, we recommend that sites or agencies prepare a list of adherence support resources available at clinic-, agency-, and community-based organizations and/or community levels. Resources of relevance to specific subpopulations (eg, drug or alcohol abuse treatment, women’s health issues, mental health services, case management, or structural services) should also be identified. The provider or clinician using the GRIP guide should have a clear understanding of the options available to a patient and where there are gaps in services. Referring patients to services no longer available or describing them as easily accessed when they are not can lead to feelings of resentment or otherwise deteriorate trust in the patient–provider relationship. Where providers or clinicians do not know what services or adherence support might be available, it is best to state the situation as it is and offer to follow-up with or refer the patient to someone who does know. We recommend that prior to using the GRIP guide, a list of possible programs, interventions, and support services should be generated. Even if that list only includes getting on a waitlist for a service, receiving a pill box, or getting help programming a cell phone alarm, such a reference is critical in promoting the kinds of positive exchanges between patient and provider that facilitate open discussions on adherence, unmet needs, and available resources or limitations thereof.
2. Obtain Self-Reported Adherence
Use the self-report item provided in the GRIP guide, reading the exact wording and response options. A statement that normalizes imperfect adherence may reduce the likelihood of demand characteristics or socially desirable response bias (eg, “Many people have trouble taking all their medications on time every day from time to time.”). Provide clarification as needed. For example, if the patient asks what is meant by “as you were supposed to,” explain that it refers to their understanding of how they are supposed to take their HIV medications.
3. Examine the Patient’s Response
Prior to directing the patient to available adherence resources, programs, or tools, it may be useful to first gain a clear understanding of the factors that influenced the patient’s response using reflective- or patient-centered listening skills. Shared meaning of diverse response options is important to providing appropriate guidance. Further, it provides an opportunity to gain a sense of a given patient’s openness to get support, kind of support that may be useful, and most appropriate targeted course of action. Reporting nonadherence can be a very difficult and intimidating experience for some, while others may disclose nonadherence without concern but are otherwise unwilling to consider next steps. The role of the guidance is to move people to actually using available resources. Taking the additional step of discussing the patient’s response may help to promote a smooth transition to making recommendations for the patient to consider. Table 1 suggests some prompts for examination of responses and also has examples for phrasing. Basic communication strategies that feedback one’s understanding of what the patient has shared and confirm the accuracy of that understanding, such as summarizing, paraphrasing, or reflective listening, can facilitate this examination.
Suggested Use of IAPAC GRIP Guide’s HIV Treatment Adherence Component Guide.
a Avoid excessive praise for reports of good to excellent adherence. Rather, determine the strategies in use that have promoted high/higher rates of adherence and reinforce/praise the strategies and effort.
b If already involved in an antiretroviral therapy support program, confirm patient perspective of utility, continued use, and potential for supplementing with additional tools/approaches.
4. Offer Guidance
Use the GRIP guide and the list of available resources (step 1 above) to guide patients to adherence-related support that would be of the greatest potential utility (based on responses to assessment items and the examination of those responses) and interest to them. Evaluate patient interest in suggested resources; linkage to a service or adoption of an adherence-related strategy will depend in part on the patient’s interest and motivation to do so. If a specific recommendation is not acceptable or feasible from the patient’s perspective, move to other recommendations that provide a better fit. Where resources for the patient are not presently available, consider asking the patient what his or her thoughts are on achieving or maintaining high adherence. Note that these discussions do not need to take a considerable amount of time and can be streamlined. A time-saving approach would be to intentionally remove messaging on information the patient already knows well.
5. Commitment and Follow-Up
While not noted in the GRIP guide or the table, moving guidance to an actionable behavior (eg, asking the patient to get scheduled for this service in the next 10 days) can promote execution of the recommendation. As noted above, asking patients what they would be willing to do is preferable to “prescribing” a course of action. In addition, obtaining a verbal commitment to the course of action agreed upon by provider and patient can foster behavior change and create a “goal” that can be discussed at subsequent visits. Documenting the goal or outcome of implementation of the GRIP guide in a location where all potential providers or clinicians who see the patient is recommended.
As a general recommendation, monitoring and evaluation of the use of the GRIP guide from provider and patient perspectives would help clinics to maximize its utility and adapt approaches to best meet the needs of their specific clinic populations.
Cautions and Limitations
While the GRIP guide offers specific guidance to promote increasing investments in adherence monitoring and guidance to needed resources and adherence support, the tool should be used in the context of supportive discussions with viable adherence support options available. Simply asking about adherence is insufficient to promote sufficient and sustained adherence. Further, if a clinician intentionally or unintentionally creates a punitive atmosphere in response to reports of anything besides “excellent,” it is very likely that future self-report will reflect a reasonable desire to avoid the negative experience rather than reflect actual improvements in adherence. The GRIP guide itself is a tool for starting a conversation that must be carefully and competently carried forward to produce the desired outcome—gauging when adherence support is needed and guiding people to the appropriate support.
In research, multiple methods and multiple items are often used to assess adherence. The GRIP guide uses a single item. This is appropriate as a tool intended to foster open discussion and conversation; however, caution in overreliance on accuracy of reporting is warranted. Further, research to determine the performance of this item when used in conversation, versus self-administered, is needed.
Conclusion
Among its several aims, IAPAC’s GRIP guide is meant to facilitate clinician–patient communication around levels of ART adherence and to identify a plan to promote, maintain, or enhance ART adherence that both the clinician and the patient can agree upon. The steps recommended in this brief report are intended to complement the appropriate use of this tool and enhance its potential influence in proactively monitoring and intervening to support ART adherence.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.