A Study of HIV-Dementia among Hospice Patients in Lusaka, Zambia

Transcription

1 A Study of HIV-Dementia among Hospice Patients in Lusaka, Zambia Michelle Powell, Alan Haworth, FRCP, Daniel Murman, MD MS, Gretchen Birbeck, MD MPH US Fulbright Fellows Program University of Zambia Chainama College of Health Sciences Michigan State University

2 Caveats This is NOT ready for prime time! Data collection ongoing Appropriate normative comparison data Discuss process and lessons learned Descriptive data

3 Objectives Develop and validate instruments to assess for HIV-D and associated neuropsychiatric symptoms in Zambia Study Design Exposure-Control study at Kalingalinga Hospice in Lusaka, Zambia

4 Setting-Kalingalinga Hospice Newly opened hospice taking communitybased referrals Goal to train caregivers for optimal home care and provide support for these patients and their families To select from broad range of disorders not just HIV

5 Instruments MMSE (locally adapted) HIV Dementia Scale (HDS) Trails Making A & B Neuropsychiatric Inventory (NPI) Caregiver Dependence Scale (fxnl status)

6 Translation and cultural validation Languages=English, Nyanja, Bemba -Via committee Cultural validation -Pilot in markets, then in clinics and hospitals

7 Additional Data to be Collected Demographic data HIV status Medical history Simplified neurological examination Conducted by MP + hospice clinical officers

8 Data Sources Hospice records Medical records Patient report Family report Hospice staff

9 Lessons learned Translation and cultural validation takes a great deal of time if done well IRB agonies International aspects Issues of vulnerability in those with possible cognitive impairment

10 NPI was simply not acceptable culturally Family members were unwilling to discuss issues of aggressions, agitation, hallucinations or depressions in any abstract terms though these terms and conditions were understood by bystanders during the piloting

11 Caregiver dependence scale demonstrated strong floor effect Some items had little variability Does need to be kept company while awake? Referral patterns aren t easy to establish Among the first 57 patients, 48 were PLWA

12 Back to the drawing board Comparison group needs to be similar in age, education, SES, gender (?), acculturation (?) Immediate same-sex sib? Clients receiving home-based care for non- AIDS related problems in same community? Regardless, need to know their HIV status complicates this

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14 Demographic Data for PLWA (N=47) Age: mean 34.7 (23-58) 62.5% females 25% widowed, 16.7% divorced Education-39.6% < primary Caregiver Mother (33.3%), Sister (33.3%), Spouse (22.2%), Aunt (5.6%)

15 Language Instruments available in English, Nyanja and Bemba 85% of patients spoke one of these in the home But only 62% reported one of these three as their first language

16 Medical History CDC staging of HIV Stage 2: 6.4% Stage 3: 27.7% Stage 4: 66% Only 1 person had rec d ARVs 47.9% had hx of TB Only 1 person had undergone an LP

17 Reported cognitive problems Memory problems yes 52.1% Dys (29.6%), wks (25.9%), mos (44.4%) Gradual (62.5%), sudden (37.5%) Change in thinking -yes 33.3% Dys (33.3%), wks (27.8%), mos (38.9%) Gradual (70.6%), sudden (29.4%)

18 Neurological Examination (1) LOC-all were required to be alert at time of interview 83% followed two simple commands Facial palsy 6.6% Ataxia 28.9% Sensory abnormality 11.9% Babinski response present 19.6%

19 Exam (2) Gait Normal 42.4% Slow, but without assistance 26.7% Requires assistance 11.1% Unable to ambulate 20%

20 MMSE (possible 30) Mean 24.2 (range 6-28) 31.9% had MMSE <24 16% were <SD below mean for comparison groups Timed test in PLWAs have longer mean than comparison groups Further analysis pending

21 Conclusions (1) More resources and selection of different patient population would alleviate some of the issues raised and lessons learned but not all of them. Small studies can offer significant value IRB agonies something s gotta give

22 Conclusions (2) Culturally valid instruments for assessing functional status, neuropsychiatric symptoms, and neurological outcomes (HRQOL) are needed Functional outcome measures might also allow a better understanding of the true social and economic impact of NeuroAIDS