With the advancements in medical sciences, there is now very little difference between the life expectancy of people with HIV (PWH) and the general population. The increase in life expectancy has raised interest and discussion regarding the quality of life of PWH and the management of chronic diseases. Gilead Sciences, with the support of a number of Singapore and Hong Kong community-based organizations, conducted research on PWH's perceptions of health management and quality of life. The research identified three blind spots that affect the quality of life among PWH to improve their overall health, including 1) most PWH prioritize short-term physical health over mental and psychosocial health, 2) PWH have low awareness of chronic diseases such as cardiovascular and other conditions, 3) PWH are relatively passive when communicating with healthcare professionals. These blind spots could lead to negative impacts on the overall HIV treatment outcomes, affecting the physical and mental health of PWH.

While the UNAIDS 95-95-95 targets (which call for 95% of PWH to know their HIV status, 95% of PWH to be on antiretroviral therapy, and 95% PWH on antiretroviral therapy to have suppressed viral loads [see note]) aim to end AIDS as a public health threat, experts have also proposed the fourth '90' which brings attention to PWH's long-term health management and quality of life^[2,3]. In light of this, Gilead Sciences' in-depth qualitative research was conducted between February and May 2022 in Singapore and Hong Kong. In Singapore, a total of 30 respondents who were receiving HIV treatment and have an undetectable HIV viral load, were interviewed.

The three key blind spots that affect the quality of life among PWH in Singapore, include:

1)  PWH prioritize short-term physical health over mental and psychosocial health
Consultation sessions between PWH in Singapore and their healthcare professionals center mainly around behaviors that will impact short-term health issues due to HIV, and few recognize that mental stressors such as external stigma and social anxiety can impact their immediate well-being. Notably, when being asked about the top five most important well-being indicators, the PWH interviewed ranked, in sequence, is 1) impact of symptoms and side effects of drugs, followed by 2) mood, 3) sleep, 4) body changes, and 5) energy, and agree that their mood impacts their social motivation and daily functioning. Even so, Singaporean patients highlighted that physicians placed the greatest emphasis on physical health and were less likely to focus on mental and social health in their discussions with patients.

2)  PWH have limited awareness of the appropriate care strategies on HIV-related comorbidities such as cardiovascular and other conditions
While PWH are aware of the importance of achieving holistic well-being by adopting healthier lifestyles, they generally have limited awareness of comorbidities risk associated with HIV, such as cardiovascular and other conditions. Inadequate communication between PWH and healthcare professionals can potentially compromise the effective management of their HIV. This is particularly evident when PWH lack awareness of specific symptoms and side effects. For example, some antiretroviral drugs used in HIV treatment may elevate the risk of cardiovascular disease and other conditions, thereby affecting the long-term health of PWH^[1,2].

3)  PWH were relatively passive during communications with healthcare professionals
Research found that doctors are taking a leading role during consultation sessions, focusing on the physical conditions of the PWH, like viral load control and immune index. PWH are often passive recipients of information from healthcare professionals, and they tend to refrain from asking questions or raising concerns about HIV-related comorbidities, mental health, and psychosocial well-being. This limits communication effectiveness during consultation sessions and as a result, will impact treatment outcomes.

Dedicated mobile app to assist PWH with proactive health management

To order to assist PWH to communicate more effectively with their healthcare professionals, Gilead Sciences has recently launched the My Care Diary educational mobile app for PWH in Singapore. As a trusted source of disease awareness materials for PWH, the app deploys gamification features with animated avatars to increase engagement of interactive educational content which helps them plan conversations with healthcare professionals prior to medical appointments and reinforce the value of self-care and quality of life [see Note 2]. 

"The outlook for PWH has significantly improved and they can lead long and healthy lives. The research findings have demonstrated that more can be done to raise awareness of the long-term quality of life of PWH. Moreover, prioritizing psychosocial health well-being is an important aspect of the overall health management of PWH, as it could impact the treatment outcome, quality of life, and physical well-being," said Dr. Asok Kurup, Infectious Disease Specialist from Mount Elizabeth.

"Our focus on patient-centricity is key to the delivery of quality care, which we strongly believe unlocks better health outcomes for all. This research helps us to understand PWH's perception of health management, knowledge about chronic diseases, and the challenges they face so that we can further strengthen patient education through different channels. This not only improves the health management of PWH but also encourages them to play a more proactive role when communicating with healthcare professionals. Through this, PWH will be able to identify the most appropriate care strategies which can improve their physical and psychosocial health ultimately," said Ms. Christina Yip, Senior Director, Medical Affairs, Gilead Sciences.

Mr. Chronos Kwok, Executive Director, Action for AIDS Singapore agreed that "Managing health and overall well-being can be sometimes overwhelming for PWH, especially those newly diagnosed. It is therefore important for community-based organizations to provide resources such as communication tools, and activities that can help foster effective engagement between PWH and their healthcare professionals. This can contribute to enhancing the confidence of PWH, especially on topics around HIV care, mental health, and social support, thus improving their overall quality of life in the long run."