Caregiver versus self-reported activities of daily living among HIV-positive persons in Rakai, Uganda

ABSTRACT

Assessment of an individual’s functional status, as measured by activities of daily living (ADL), is an essential element in the diagnosis of HIV-associated neurocognitive disorders (HAND) but individuals with cognitive impairment may not accurately report ADL. We assessed agreement between self- and caregiver-reported ADL in HIV-positive persons. Antiretroviral therapy (ART)-naïve HIV-positive persons (n = 321) and HIV-negative controls (n = 134) in Rakai, Uganda, completed neurocognitive tests and an ADL questionnaire. Co-resident relatives (“caregivers”) were independently administered the ADL questionnaire to determine their perception of the participant’s ADL. The relationship between neurocognitive impairment and participant-caregiver agreement was assessed using kappa statistics. Regression was used to estimate adjusted prevalence ratios (AdjPR) of participant-caregiver agreement on disability scores. Relative to HIV-negative adults, HIV-positive participants scoring at least 1 standard deviation (SD) below the norm on 2 or more neurocognitive tests were classified as having mild neurocognitive impairment and those scoring at least 2 SD below the norm on 2 or more neurocognitive tests were classified as having moderate-to-severe. Mean age was 36 years (SD 8.9), and 53% of participants were male. The rate of ADL agreement between participants and caregivers was 77% for HIV-positive and 87% for HIV-negative participants (AdjPR = 0.89, 95% CI 0.81–0.97, p = .01). Among HIV-positive participants, 41% had moderate neurocognitive impairment, 15% had severe neurocognitive impairment, and 44% were normal. For moderate neurocognitive impairment, the rate of ADL agreement was 69% and for severe neurocognitive impairment, it was 66%. Compared to non-impaired HIV-positive participants (86% ADL agreement), ADL agreement was lower with moderate impairment (AdjPR = 0.89, 95%CI 0.81–0.98, p = .023) and severe impairment (AdjPR = 0.77, 95%CI 0.63–0.95, p = .014). Gender, education and CD4 count were not associated with ADL agreement. HIV-positive persons with neurocognitive impairment have lower agreement with caregivers’ reports of ADL than HIV-positive persons without cognitive impairment.

KEYWORDS:

• Activities of daily living
• care giver
• self-reports
• neurocognitive impairment
• agreement

Acknowledgements

We would like to thank all clients that participated in the study and all HIV care clinics where some participants were referred from, for their contribution towards completion of the study. We wish to acknowledge the contributions of Nabbaale Sylvia and Namukwaya Oliva who conducted neurocognitive assessments of the participants. We also thank Bloomberg School of Public Health MPH office for their guidance on the initial preparation of this work.

Disclosure statement

No potential conflict of interest was reported by the authors.

Additional information

Funding

This work was supported by Fogarty International Center [grant number 5D43TW009578]; National Institute of Mental Health [grant number RO1 MH099733; MH080661-08]; Johns Hopkins University Center for AIDS Research and the National Institute of Allergy and Infectious Diseases [grant number P30AI094189].