HIV Optimized Patient Experience (HOPE) Survey
Understand how patients and healthcare professionals prioritize treatment goals and how this impacts patients' experiences.
The World Health Organization (WHO) and the Department of Health and Human Services (DHHS) guidelines recognize that HIV treatment has evolved significantly.1,2 Antiretroviral therapy (ART) has transformed HIV infection into a manageable chronic condition, allowing many people who live with HIV (PLHIV) to live longer, healthy lives.3 Developing strategies that consider the suboptimized patient experience and facilitate discussion between healthcare professionals (HCPs) and PLHIV is an important step in enhancing HIV care.
In an effort to explore challenges and solutions in HIV care, ViiV Healthcare conducted the HIV Optimized Patient Experience (HOPE) Survey to understand how HCPs and PLHIV prioritize treatment goals and how this may impact patients’ HIV treatment experiences.4
The HOPE Survey was a market research initiative conducted in 2016, sponsored by ViiV Healthcare and Harris Poll. The study consisted of 2 surveys conducted with PLHIV and HCPs (specialists, primary care, nurses) treating PLHIV. The first survey included 1501 US PLHIV. Ninety-four percent of these patients were concurrently taking ART. Patients were recruited via telephone, national online panels, social media, and AIDS service organizations. A second survey was completed by 300 HCPs who care for PLHIV. HCPs were recruited via national online panels only, and were asked to respond to questions in the context of their patients who had HIV-1 RNA <50 copies/mL while on stable treatment.
In the HOPE Survey’s assessment of patient experience, key topics emerged: acceptance of side effects, disruption to daily routines, and potential for drug-drug interactions (DDIs). Nearly half of suboptimized patients surveyed (46%) felt they had no choice in dealing with side effects, 54% of suboptimized patients agreed it took personal sacrifice to manage HIV, and only 68% of HCPs reported discussing DDIs with patients at every or more than half of office visits. Comparing key topic responses from the 2 surveys illuminates a potential communication gap between patients and providers in HIV care.
It is imperative that the HCP community keep pushing the boundaries of what constitutes the best that HIV care can offer. HCPs who treat PLHIV are well positioned to enhance HIV care by considering factors such as minimizing side effects, mitigating DDIs, and alleviating disruption to daily routines over the course of long-term therapy to improve the everyday lives of PLHIV.
Optimize HIV Treatment Beyond Undetectable
ART has transformed HIV infection into a manageable chronic condition, and now most PLHIV can maintain viral suppression and live long, healthy lives.3 As a result, it’s important to find strategies that push the boundaries of what constitutes treatment success—considering factors that affect patients’ treatment experience—and facilitate ongoing discussion among PLHIV and HCPs to enhance HIV care over time. ViiV Healthcare conducted the HOPE Survey in 2016 to understand how PLHIV and HCPs prioritize treatment goals and how this may impact patients’ HIV treatment experiences.4
Data collected from 2 online surveys in HOPE identified aspects of the HIV patient experience that may warrant further consideration: acceptance of side effects, disruption to daily routine, and potential for DDIs in suboptimized patients.
THE SUBOPTIMIZED PATIENT
The HOPE Survey defines a suboptimized patient as one who is virologically suppressed on treatment (current ART user with HIV RNA <50 copies/mL), and yet4:
Has stated dissatisfaction with current ART regimen OR
Has stated satisfaction with current ART regimen BUT noted any of these quality-of-life statements:
- Taking HIV medication gets in the way of my lifestyle
- I planned activities around my medication schedule so the side effects do not interfere with daily activities, eg, driving, work, running errands
- I did not take my HIV medication for one or more days at a time to avoid side effects
- I changed the type of foods or the way I eat because of my HIV medication
- I missed an important event, appointment, or meeting due to side effects from my HIV medication
- 31% of current medication users surveyed in HOPE (n=1404) qualified as being suboptimized based on their responses4
- 29% of patients were perceived by HCPs as being suboptimized4
HCPs surveyed (n=300) on average perceived 71% of patients in their care as being optimized on their current regimen, leaving 29% of patients perceived as being suboptimized.
ACCEPTANCE OF SIDE EFFECTS
One major contributor of the suboptimized patient experience is the acceptance of side effects, which may involve planning daily activities around side effects, missing important events due to side effects, or non-adherence to avoid side effects. For these patients, there may be an opportunity to consider other treatments to lessen the impact of side effects in their daily lives.
Advances in ART make it possible in some situations to consider alternate regimens for suboptimized patients. DHHS guidelines recommend ART regimens with demonstrated durable virologic suppression, favorable tolerability and toxicity profiles, and ease of use.2 In other words, the best treatments not only help patients achieve viral suppression effectively, they also minimize adverse effects, making it easier for patients to adhere and maintain viral suppression over time.
According to suboptimized patients surveyed in HOPE (n=441):
- 46%said they dealt with side effects of HIV medicine because they felt they had no other choice4
- 32%thought side effects of HIV prescription medicine were worse than HIV itself4
In the HCP HOPE Survey (n=300):
- 56% of HCPs said their virologically suppressed patients had skipped doses in order to avoid side effects4
Takeaway: Patients may feel bound to their current suboptimized therapy for any number of reasons. HCPs may have an opportunity to take a deeper dive into discussion about side effects with patients.
DISRUPTIONS TO DAILY ROUTINES
Another challenging aspect of HIV treatment for suboptimized patients is disruption to daily routines. When patients are struggling with side effects or haven’t yet disclosed their HIV status, planning doses around work and social activities may cause additional stress in their daily lives. Working with patients to minimize the treatment-related disruptions to daily routines may help to empower their choice for disclosure.
- 65% of patients felt they were treated differently when people found out they had HIV4
Therapeutic strategies that consider the patient’s daily schedule and personal preferences may make taking HIV medications more convenient and ultimately improve treatment adherence. Regimen switching to enhance tolerability and simplify regimens by reducing pill burden and/or dosing frequency may be an option for virologically suppressed patients.2
Based on responses from patients taking single-tablet and multi-tablet regimens, multi-tablet regimen users (n=756) were significantly more likely than single-tablet regimen users (n=402) to feel that taking HIV medicine got in the way of their lifestyle (43% to 28%, respectively).4 This is consistent with other studies investigating the effects of combination treatments. One meta-analysis of published studies between 2005 and 2014, for example, found that patients on single-tablet regimens were more than twice as likely as patients on multi-tablet regimens to be adherent on ART.5
In the HCP HOPE Survey (n=300):
- 88% of HCPs agreed that reducing the burden of ART improved patient outcomes4
According to suboptimized patients surveyed in HOPE (n=441):
- 54%somewhat or strongly agreed it took a lot of personal sacrifice in order to manage their HIV4
- 8%reported skipping taking medication to avoid having to deal with a side effect, compared to 1% of not suboptimized patients currently receiving treatment4
Takeaway: Choices in ART today make it generally possible to tailor effective regimens to individual patient treatment needs and barriers. Exploring medications that fit within the realities of patients’ everyday lives may be an important step.
POTENTIAL FOR DRUG-DRUG INTERACTIONS (DDIs)
DDIs between ART and other concomitant drugs are common and may affect patients’ therapeutic response.2 PLHIV may be taking medication for comorbid conditions, using over-the-counter (OTC) medications, or may have substance use issues to take into account. Recommended regimens that are comparable in efficacy may vary in characteristics, such as potential for DDIs, and are often matched to individual patient needs to support long-term adherence and success.
According to HCPs surveyed in HOPE (n=300):
- 41%said they didn't know the average number of OTC medications their patients were taking4
- 24%said they didn't know the average number of pills their patients were taking for other comorbid conditions4
- 27%of their patients had issues with substance abuse (eg, street drugs, pain medication, and/or alcohol)4
Takeaway: Over the course of therapy, it may become difficult for HCPs to track the medications (both prescription and OTC) their patients take.
Whatever challenges are facing suboptimized patients, maintaining sound patient-provider communication is a common denominator that helps improves treatment outcomes.2 Based on survey results, patients are advocating for their health. In fact, suboptimized patients surveyed were the most likely to ask their doctor about switching medication, consult other people living with HIV, and talk to another member of their healthcare team.4 HCPs may have more opportunities to engage suboptimized patients in productive conversations about their particular needs.
Responses from the 2 HOPE surveys revealed potential communication gaps between patients and healthcare providers:
In the HOPE Survey, 83% of HCPs (n=300) said they started conversations about concerns, interests, and satisfaction in relation to their patients' HIV treatment.4 Patients perceived these conversations very differently. Most patients reported that they initiated discussions on side effects (60%), satisfaction or dissatisfaction with their HIV treatment (57%), and concerns about their HIV treatment (56%). In contrast, 64% of patients reported that their healthcare providers initiated discussions on how well their HIV treatment was working. This illustrates one way in which the communication gap may exist. By phrasing the question broadly, HCPs may be missing the opportunity to address patients’ specific concerns.
- 95% of HCPs (n=300) said they always welcomed their patients' input in treatment decisions4
- 65% of patients surveyed responded that they always felt that their healthcare provider welcomed their input4
Takeaway: Deeper dialogue between HCPs and patients to understand patients' experience on treatment may help improve treatment outcomes.
Major strides have taken place in recent years in helping PLHIV achieve viral suppression, and today there are more ART options than ever. Although suppression continues to be the primary treatment goal, HCPs are well positioned to collaborate with patients and help them better manage treatment in their everyday lives.2
The HOPE Survey encourages HCPs and patients to consider the impact of factors such as the normalization of side effects, treatment-related disruptions to daily life, and potential for DDIs over the course of long-term therapy. It reveals opportunities to evolve the conversation between HCPs and PLHIV, and the importance of identifying and addressing the issues affecting patients and their overall care. Keeping the lines of communication open with PLHIV and inviting them to speak candidly may impact patients' experience on HIV treatment.
Based on HOPE Survey results, patients are advocating for their health. In fact, suboptimized patients surveyed were the most likely to ask their doctor about switching medication, consult other people living with HIV, and talk to another member of their healthcare team.
1. Consolidated guidelines on the use of antiretroviral drugs for treating and preventing HIV infection: recommendations for a public health approach—2nd ed. World Health Organization website. https://www.who.int/hiv/pub/arv/arv-2016/en/. Published June 2016. Accessed February 3, 2020.
2. Guidelines for the use of antiretroviral agents in adults and adolescents with HIV. AIDSinfo website. https://aidsinfo.nih.gov/guidelines/html/1/adult-and-adolescent-treatment-guidelines/0. Published December 18, 2019. Accessed February 3, 2020.
3. About HIV/AIDS. The Centers for Disease Control and Prevention website. https://www.cdc.gov/hiv/basics/whatishiv.html. Published December 2, 2019. Accessed February 3, 2020.
4. Data on file. ViiV Healthcare group of companies. Research Triangle Park, NC.
5. Clay PG, Nag S, Graham CM, et al. Meta-analysis of studies comparing single and multi-tablet fixed dose combination HIV treatment regimens. Medicine. 2015;94(42): e1677.
HVUWCNT190032 March 2020