Patient Autonomy and Quality of Life

Life for patients living with HIV sometimes requires a trade-off between taking life-saving antiretroviral therapy (ART) and experiencing the impact that decision may have on patient autonomy and quality of life. Improvements in ART have been nothing short of game changing, giving patients much-needed treatment options and substantial gains in longevity.^1,2 ART advances have narrowed the gap between the life expectancy of HIV-positive people and HIV-negative people. On the other hand, long-term retention and adherence to daily ART regimens can exact a price for some patients, stripping away some of the freedoms implicit in treatment choice.

UNMET NEED FOR GREATER PATIENT AUTONOMY

Patient lifestyle may not fit ideally with regimens that require high adherence for maintenance of HIV-1 suppression.^1,3 Because of the need to take medication daily and often in a timely manner, patients living with HIV are continuously reminded of their disease. Pill burden related to high dosing frequency or number of ARV medications may also negatively affect quality of life. ART regimens may have the potential for DDIs and/or unfavorable tolerability profiles, with more treatments for comorbid conditions posing a higher risk for adverse consequences. While recognizing that these therapies are indeed lifesaving, some patients may feel a stigma attached to taking ART and delay filling their prescriptions, hide their medications, or miss doses because of social circumstances. Affected patients may thus feel robbed of their autonomy and independence.

Findings from the Positive Perspectives Survey have shed light on patient experiences and emotional challenges of ART.⁴ In the study of 1111 patients living with HIV currently taking ART, many reported considerable emotional challenges associated with their daily regimen despite reporting satisfaction with their current ART.

EMOTIONAL IMPACT OF ART ON
TREATMENT EXPERIENCE

Nearly two-thirds of patients experienced an emotional toll from taking ART.⁴ Specific emotional “signatures” of HIV therapy included limitations tied to daily therapy administration, stress and/or pressure to take the medication in a timely manner, and fear of discovery (ie, hid medication due to stigma). Patients were greatly interested in the future of HIV treatment, as nearly 9 in 10 patients living with HIV felt future advances in treatment would improve their quality of life (QoL).

US Food and Drug Administration has also explored the topic of patient-focused drug development through a series of reports on the impact of disease and patient point of view on treatments.⁵ In the HIV report, approximately 40 individuals participated in the meeting either in-person (20), by webcast (10), or represented support or advocacy organizations (10). Similar to the study cited above, while patients recognize and appreciate the substantial advances in HIV therapy, they still face treatment downsides, including the need for daily adherence, side effects, lack of effectiveness or resistance to treatment over time, lack of a wide range of alternative treatments, and stigma. Some patients also expressed dislike for characterizing HIV as a “manageable chronic condition,” believing that this description may be misleading and counter-productive to advancement of therapy.

ADDRESSING PATIENT AUTONOMY AND IMPROVED ADHERENCE

Although myriad approaches may be engaged to address patient autonomy through treatment compliance, continued advances in HIV treatment represents an important avenue.¹ New treatment options and/or modifications to the pharmacologic profile of existing treatments may offer such opportunities. Additionally, therapies that address and promote long-term use and adherence to ART for all patients may help improve HIV-1 suppression and close the longevity gap between HIV-positive people and HIV-negative people.