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As with cancer survivors, HIV-infected people may have unique physical, psychological, social, and existential challenges over their lifespans, yet no single instrument can assess such challenges. A newly created Impact of HIV Survey, modified from Zebrack's Impact of Cancer Scale, was developed and completed by 356 HIV-infected patients on antiretroviral therapy. Factor analyses confirmed seven scales within 38 items: Health Awareness, Positive Self-Evaluation, Positive Outlook, Value of Relationships, Negative Self-Evaluation-Outlook, Health Anxiety, and Body Changes (Cronbach's alphas range = 0.54-0.93). Participants scored high on health awareness, positive outlook, and value of relationships; high on health worry; and low on body image concerns. Patients with HIV for 15 years and longer tended to have higher positive self-evaluation scores and lower negative self-evaluation-outlook scores compared to those with HIV for a shorter duration. The initial survey version had good internal validity with potential utility in research and clinical care.

Development of an “Impact of HIV” Instrument for HIV Survivors