Involvement of HIV patients in treatment‐related decisions

Abstract

IntroductionThe improvement of antiretroviral therapy in the past decades has had a major impact on life expectancy and quality of life of people living with HIV, and also on the relationship between patients and their physicians. What used to be an acute treatment for life threatening complications, and an end-of-life therapy in the beginning of the epidemic, turned over the time into a lifelong care. The good relationship between patients and physicians represents the cornerstone of an optimal long-term therapy. Shared decision making between patients and physicians is a crucial prerequisite for the success of this approach. Several Austrian patient organizations developed an online survey together with MSD (the so-called “PAB-test”) aimed to evaluate how people living with HIV perceive the level of care in Austria.Materials and MethodsAn online survey has been developed to evaluate how people living with HIV feel about the relationship with their physicians and to what extent they feel involved in treatment related decisions.ResultsA total of 303 subjects completed the questionnaire. 44% felt “totally” involved in their therapy, 40% “strongly involved”, 12% “fairly involved”, 3% “poorly involved” and 1% “not at all involved” in their therapy. The proportion of subjects who felt totally involved in the therapy was equally distributed between sex, sexual orientation, age groups, groups of various education level, and between patients treated predominantly in intramural or extramural medical care. The most important factor for people living with HIV to feel involved in their therapy is a low amount of long-term ART-related side-effects (Figure 1). ConclusionsThe results show that the majority of people living with HIV in Austria feel involved in therapy related decisions. This proportion is equally distributed in patients with different socio-demographic or socio-economic characteristics or level of medical care delivery. According to the survey, the most important reason for people living with HIV to be involved in their therapy is to avoid long-term side effects.

Longitudinal trends and determinants of patient-reported side effects on ART–a Swedish national registry study

“…In this study, PLWH who reported that they felt involved in their care were less likely to report side effects. Involvement in care may reduce the prevalence of side effects both as a result of the patient's own expectations being addressed and also through well-functioning patient-caregiver communication [31][32][33]. Additionally, since the PROs were assessed over time in the study, part of the decline in prevalence could be a result of an increase in patientcentered HIV care where the experience of side-effects was addressed.…”

‘We want it all’:ARTpreferences assessed byDesirability ofOutcomeRanking

“…One study found that only 10% of discussions between PLWH and their doctors fulfilled all predetermined SDM criteria [18]. In a study from Austria, only 44% patients said they felt 'totally involved' in treatment decisions [19]. Some PLWH interviewed in a primary care setting felt they had little autonomy [20].…”