Abstract

It is widely accepted that modern medicine has never witnessed any other illness like HIV infection and AIDS, perceptions of which are heavily influenced by moral, religious, social and existential values. Despite commendable global success in preventing and treating HIV infection, significant challenges are being faced by the developing world in controlling HIV epidemics due to the lack of and suboptimal use of resources, societal issues and the cultural context, where patients’ belief and understanding play an important role. Therefore, retaining HIV‐infected individuals in the continuum of care is vital from both clinical and epidemiological points of view, and requires patient engagement in the care process. One possible way to improve patient engagement is to leverage patient‐reported outcomes (PROs) to improve overall patient care, thus increasing focus on gaining better understanding of the patient experience, not only from the disease and treatment perspectives, but in terms of the care, services and support they receive.

Measuring PROs should be an integral part of a broader approach to patient engagement in the care process, whereby patients’ perspectives can supplement traditional measures such as survival outcomes and process of care. Incorporation of PROs in daily practice by health care providers can allow them not only to receive key information, but to gauge patients’ experiences, including barriers affecting shared decision making. As engagement in the care process is generally greatly welcomed by the patient, both quantitative and qualitative approaches should be used in the most effective way possible to understand the extent and reasons behind the issues involved. While various tools and measures have been developed for the purpose, their routine utilization at any point of care has remained fairly low. Thus, it is time to take full advantage of PROs, to ensure effective and holistic patient care, while improving patient satisfaction and empowerment, which will benefit ongoing strategies to end the HIV epidemic by 2030.