Functional limitations of persons living with HIV affect their care needs and ability to perform social roles such as employment. Earlier estimates are outdated, and nationally representative estimates of prevalence and distribution of these limitations have not previously been available.
The objectives of this study were to characterize physical and role limitations experienced by adults in care for HIV disease in the United States and to analyze variations by demographic and health characteristics in a multivariate framework.
Among 2,836 respondents in the HIV Cost and Services Utilization Survey, we assessed physical functioning with a 9-item scale designed to span a broad continuum of tasks and administered the 2-item ACTG SF-21 role functioning scale. Linearization methods were used to account for the multistage survey design.
Limitation in complex roles—working at a job, working around the house, or going to school—was more prevalent than limitation in most specific physical tasks. Among physical tasks, limitation was more prevalent in energy-demanding activities such as climbing stairs (43%) or walking >1 block (26%) than in self-care tasks such as bathing and dressing (14%). Greater limitation was associated with older age, lower educational attainment, more advanced disease, and higher symptom burden. Protease inhibitor treatment was associated with somewhat less physical limitation but no difference in role limitation.
Functional status varied widely, suggesting the need for flexible, individualized care system responses. Results identified subgroups whose needs warrant special attention. Symptom intensity, pain, and fatigue were strongly associated with limitation; improved management of these disease manifestations might improve physical and social functioning.