Survey of Consumer, Clinician and Service Providers about Needs of Long-Term Survivors and People Aging with HIV in New York State

Background: As the number of long-term survivors (LTS) and older people with HIV (OPH) continues to increase, there is no consensus on how to meet their practical needs.
Materials & Methods: The HIV and Aging and LTS Subcommittee of the NYS Quality of Care Community Advisory Council held town halls for consumers and providers across the state in August 2020. Based on themes identified in these town halls, Syracuse University launched a statewide survey in June 2021 using Qualtrics™. The survey was open to consumers aged 18 and over who were LTS or OPH, and clinicians and social service providers working with them. For each theme, respondents were asked to choose the 3 most important barriers and recommendations. Consumers also answered questions about HIV and comorbidities; all answered questions about demographics. Themes included: clinical care and coordination, telemedicine/telehealth, medication and pharmacy services, aging and long-term care, mental health and social support, barriers during COVID-19, health equity and stigma, transportation and food, housing, and financial support. Responses were characterized using basic descriptive statistics
Results: 132 people completed the survey: 124 consumers from 26 counties and 44 provides (20 clinicians, 24 social service providers). On average, consumers were 56 years old, 41% were from the Mid-Hudson/Hudson Valley Region and16% were from the Capital District; 39% were cis gender women, and 28% were African American. On average, consumers had been living with their HIV+ diagnosis for 27 years, and reported 4 additional health conditions, most commonly anxiety (27%), depression (30%), hypertension (27%), and being overweight (26%). The most commonly endorsed barriers by consumers and providers were related to housing, clinical care and coordination, telehealth, and mental health and social support. Recommendations most commonly endorsed to address these barriers were: for housing, build more housing and make more housing available to low income populations; for clinical care and coordination, integrate HIV care with other specialties; for telehealth, mandate annual in-person visits to ensure that PLWHA needs are being met; and for mental health and social support, hire counselors and mental health professionals that represent the communities they serve. In contrast with greater consumer concern about catching potential medication interactions, providers expressed concern about medication delivery services and lack of sensitivity training for pharmacy staff. All 3 groups reported that consumers were unable to see people or attend support groups in person due to COVID-19 and recognized consumers’ financial strains and recommended that CPWs make regular check-in calls to PLWHA during COVID-19 and that the state provide more funding to assist OPH and LTS in housing, food, and transportation.
Conclusions: Survey respondents in NYS are most concerned with coordination of clinical care, unmet housing needs, cultural representation in mental health services, and financial support of older people living with HIV and long term survivors of HIV. Consumers, clinicians, and service providers shared many of the same impressions of barriers and recommendations.