RESUMEN
Nearly 60% of people with HIV in New York State are over 50 years of age. After town halls and a statewide survey of long-term survivors, older people living with HIV, and their providers, the Quality of Care Program of the AIDS Institute in the New York State Department of Health developed a statewide quality improvement project that aimed to improve screening for functional impairments among people aging with HIV. Thirteen sites reported outcomes of a pilot project using a modification of the World Health Organization's Integrated Care of Older People (ICOPE) intrinsic capacity screen in small scale, short cycle tests of change. A total of 1,629 people were found to be eligible for screening, and of these, 638 people were screened. Both clinical and non-clinical sites were able to identify significant areas of need. Positive screens ranged from a low of 17% for the identification of hearing issues to 49% for vision concerns. Only 11% of people with memory or nutritional concerns were referred for services; hearing loss was the domain with the largest number of referrals, at 27%. Although in many cases, when referrals were not made, patients/clients were already under care for the identified functional deficit, in other cases no services were available for referral or patients/clients declined to use the offered service. Sites also responded to the findings of the screen by initiating process changes, and many reported continuing to screen for functional impairments after the close of the pilot. The modified ICOPE screen is still in use in sites throughout the state. This pilot demonstrated that a collaboration between people with lived HIV experience, the New York State Department of Health, clinicians, and service providers could result in improved quality of care for people aging with HIV.
RESUMEN
Background and Objectives: Over 50% of New Yorkers living with human immunodeficiency virus (HIV) are 50 years old or older, and the emotional and physical consequences of being a long-term survivor are significant. This study aimed to identify the practical needs of long-term survivors and older people with HIV (consumers) in New York State and develop recommendations addressing those needs. Research Design and Methods: The HIV + Aging/LTS/Perinatally Diagnosed Subcommittee of the Consumer Advisory and Quality Advisory committees in the New York State AIDS Institute used community-based participatory research (CBPR) methods to design a statewide survey about the care needs of consumers in New York State. This survey, open to consumers, clinicians, and supportive services providers, was launched in June 2021 using Qualtrics. Participants provided demographic data and chose the 3 most important barriers and recommendations from each of 10 categories of issues affecting health care and supportive services. Consumers provided information about their HIV diagnosis and other health conditions. Responses were characterized using basic descriptive statistics. Results: Participants included 124 consumers from 26 counties, 20 clinicians, and 24 supportive service providers. Among consumers, 67% were cisgender men, 27% were African American, and 65% were both long-term survivors and older people with HIV. On average consumers had been diagnosed with HIV for 27 years. Participants were concerned with clinical care coordination, housing needs, cultural representation in mental health services, and financial support of consumers. Discussion and Implications: CBPR is an effective approach to developing consumer-generated recommendations to improve HIV care for long-term survivors and older people with HIV. Town hall formats informed survey design, enabled broad coverage of topics, and ensured that focus remained on priorities most important to consumers. The first quality initiative arising from the study was a routine screening of long-term survivors of HIV to identify functional decline and enhance referral pathways and care linkages.