tonya n. taylor, curtis dolezal, susan tross, and william c. holmes

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Quality of Life Change in Quality of Life Change in Zimbabwean Patients at Western Zimbabwean Patients at Western versus Traditional African versus Traditional African Medical Care Sites Medical Care Sites Tonya N. Taylor, Curtis Dolezal, Susan Tross, and William C. Holmes HIV Center for Clinical and Behavioral Studies June 25, 2009

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Quality of Life Change in Zimbabwean Patients at Western versus Traditional African Medical Care Sites . Tonya N. Taylor, Curtis Dolezal, Susan Tross, and William C. Holmes HIV Center for Clinical and Behavioral Studies June 25, 2009. Background. - PowerPoint PPT Presentation

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Page 1: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

Quality of Life Change in Quality of Life Change in Zimbabwean Patients at Western Zimbabwean Patients at Western versus Traditional African Medical versus Traditional African Medical

Care Sites Care Sites

Tonya N. Taylor, Curtis Dolezal, Susan Tross, and William C. Holmes

HIV Center for Clinical and Behavioral StudiesJune 25, 2009

Page 2: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

BackgroundBackground 22 million people living with HIV/AIDS in sub-Saharan Africa

have little to no access to life saving antiretroviral treatment (ART).– only 28% of those needing ART in the region are currently

covered.

Structural and socioeconomic constraints prevent many from accessing HIV prevention, testing, and treatment.

Consequently many delay in their engagement into treatment

Page 3: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

Background cont. Background cont. To remedy these challenges, many have called for community-based

approaches, including the use of traditional healers

Traditional Healing is an integral part of African culture and society and is the primary system of health care for more than 80% of rural Africa.

Many Africans with HIV turn to traditional healing throughout their disease course.

There are no data on the potential role of Traditional Healing on the delivery of HIV care (or ART rollout) in Africa or other resource poor settings

Page 4: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

ObjectivesObjectives To explore differences in HIV-related quality of life (QoL) with varying medical care sites.

We examined self-perceived QoL changes over 1 month in a presumptively HIV+ patients from traditional African care (TAC) and western medical care (WC) sites using the HAT-QoL and the MOS-HIV

We hypothesized that in individuals seeking TAC would significantly improve in QoL compared to those seeking WC

We conjectured that the mental health benefits of culturally contextualized psychological support of traditional healers would result in a broad perception of improved physical functioning and well-being

If confirmed, we anticipated that these findings would be among the first to provide data on the potential cultural dynamics that are missing from current policies on ART rollout for Africa.

Page 5: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

Traditional Healing and HIV Care in Traditional Healing and HIV Care in rural Zimbabwe rural Zimbabwe

Not a substitute for western therapeutics, but an alternative explanatory model for the diagnosis and management of illness

Diagnose its socio-etiology, answering the more culturally relevant question: why did this happen to me?

Biomedicine can address HIV's physical symptoms, but its social and cultural cause and subsequent meanings can only be revealed through the metaphysical insights of traditional healing

Page 6: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

Un’angaUn’anga Health and healing are maintained by a

balance of coolness from social harmony that counteracts the heat of social conflict caused by witchcraft, greed and envy

Six types of healers (n’anga)– spirit medium (svikiro)– diviner (mushoperi)– herbalist (godobori)– faith healers (muporofita)– midwife (nyamukuta)– injectionist

N’angas help individuals examine the interpersonal context of their illness experience

e.g. resolve disputes or help individuals cope with grief and loss

Page 7: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

Quality of Life & HIV/AIDS Quality of Life & HIV/AIDS QoL, hereafter is defined as the degree of well-being felt by an

individual or group of people that includes social, economic and political factors.

QoL (especially in Public Health) is often measured as physical, psychological and social well-being.

Since the advent of the AIDS pandemic, attention to QoL with HIV infection has remained a strong area of study

The ability to assess HIV-specific QOL in a culturally sensitive manner is imperative. However, there are few QOL instruments validated for use in sub-Saharan Africa.

Page 8: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

Quality of Life Measures Quality of Life Measures

Medical Outcomes Study HIV Health Survey (MOS-HIV) Wu et al 1991

11 dimensions: – general health perceptions– physical function– role function– social function– cognitive function– Pain– mental health– energy/fatigue– health distress– quality of life– health transition

HIV/AIDS-Targeted Quality of Life Instrument (HAT-QoL). Holmes & Shea, 1997

9 dimensions:– overall function– disclosure worries– health worries– financial worries– HIV mastery– life satisfaction– medication worries– provider trust– sexual function

Page 9: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

Adaptation of the Instruments Adaptation of the Instruments The International Quality of Life Assessment Project Translation

Procedures were used to adapt the QOL instruments.

These processes were carried out by six Linguistic graduate students from the University of Zimbabwe, two bilingual health care workers, and the original instrument developers: Drs. William Holmes and Christopher Mast (for Dr. Albert Wu).

The reliability and validity of the Shona adapted QOL instruments are reported elsewhere (Taylor, Dolezal, Tross and Holmes, in AIDS Care).

Page 10: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

MethodsMethods

Page 11: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

Chipinge - A Place of TroublesChipinge - A Place of Troubles

Border community

Commercial farming– Migrant labor – Long distance trucking

High illiteracy

Extreme rural poverty

Gender inequality

Military camp

Commercial sex workers

Page 12: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

Participants Participants 400 Shona patients (200 TAC and 200 WC) were

consecutively sampled as they sought treatment treatment at 12 sites for one of the following infections associated with HIV:– TB, recurring STIs, unusual skin problems

(especially herpes zoster) and chronic diarrhea

24 healers recruited to their self-reported expertise in the treatment of HIV or AIDS

Inclusion criteria include: being an adult with one of the aforementioned an OI associated with HIV, and presenting for care and treatment.

All respondents read and signed a written consent form.

Page 13: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

ProceduresProcedures WC Participants were recruited by their

primary care provider (doctor or nurse) and invited to participate in the study.

TAC Participants were first invited to participate in the study by the healer. After observing each consultation the PI and research assistant invited only those patients who fit the criteria for the in-depth interview.

Interviews were conducted at baseline (after the clinical consultation) and one-month follow-up in a private room at the clinic or healer’s hut

Page 14: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

Data Collected Data Collected 254 individuals completed baseline

and one-month follow-up Data collected during the interviews

included: – A socio-demographic

questionnaire (5 min) – MOS-HIV (10 min) – In-depth Interview to elicit an

Illness Narrative (20 min)* – WHO clinical guidelines for AIDS

(5 min)– HAT-QoL (10 min)*data will not be presented today

Page 15: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

Analytic Plan Analytic Plan For continuous and categorical variables, bivariate two-group

comparisons were performed using 2-tailed t-tests and X2 methods

A linear regression model was constructed for each QOL dimension with change-in-dimension-score as the dependent variable

Site-of-care (SOC) was entered into all models, along with covariates that exhibited a bivariate association (p≤0.10) with SOC to adjust for potentially confounding

Baseline QoL scores were entered into each model to adjust for differences in perceived health status and well-being at study entry

Final alpha-level of 0.01 for SOC differences was employed.

Page 16: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

ResultsResults

Page 17: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

Demographic Profile Demographic Profile TACN=155

WCN=99

Sig.

Mean Age (SD) 13-59 31.9 (11.2) 32.2 (8.4) NS

Gender Female 60% 56% NS

Marital status Married 58% 52% NS

Employment No 14% 24% 0.04

Education Partner LossChild Loss

O-Level > 25%23%40%

39%34%38

0.030.05

NS

• p-values from chi-square tests, except age, which is from t-test;• All percentages computed using denominator made up of all those who provided an answer; rounding may make addition of percentages for some characteristics greater or less than 100%;d O- and A-Levels in Zimbabwe correspond roughly to grades 8-10 and 11-12, respectively, in the United States.

Page 18: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

Clinical ProfileClinical ProfileTAC n=155

WCn=99

(p-value)

Weight loss 79% 88% NS

Chronic diarrhea 67% 47% 0.001Prolonged fever 74% 82% NS

Persistent cough 54% 80% <0.001Generalized rash 51% 41% NS

Shingles 12% 19% NS

Candida 27% 38% 0.05Cold sores 45% 44% NS

Lymph nodes 68% 52% 0.01Meet AIDS definitionTB (ever)

74%9%

79%66%

NS

<0.001

STIs (ever) 62% 55% NS

Page 19: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

Baseline QoL by Site-of-CareBaseline QoL by Site-of-Care The TAC subgroup had higher (thus, better) baseline scores in

16 out of 19 dimensions

On the HAT-QoL, the TAC group significantly exceeded the WC group on 4 out of 8 dimensions– overall function, disclosure worries, life satisfaction, and

provider trust

On the MOS-HIV, the TAC subgroup significantly exceeded the WC group on 7 out of 11 dimensions– general health perceptions, physical function, role function,

social function, pain, mental health, and health distress

Page 20: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

Baseline HAT-QoL Scores by SOCBaseline HAT-QoL Scores by SOC

QoL Dimension, mean (SD) TACa WCa p-value

Overall Function 48.49 (25.91) 40.24 (24.35) .012 Disclosure Worries 47.32 (27.98) 54.69 (29.16) .046 Health Worries 46.09 (28.85) 41.86 (27.10) NS

Financial Worries 29.09 (24.77) 28.45 (25.06) NS

Illness Mastery 45.56 (32.16) 46.09 (31.93) NS

Life Satisfaction 44.40 (27.52) 35.35 (24.99) .009 Medication Worries 74.26 (25.97) 72.71 (26.38) NS

Provider Trust 79.25 (23.67) 67.09 (28.08) .001

Page 21: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

Baseline MOS-HIV Scores by SOCBaseline MOS-HIV Scores by SOCQoL Dimension, mean (SD) TAC WC p-value

General Health Perceptions 30.61 (17.44) 26.16 (13.49) .032 Physical Function 62.94 (26.15) 54.48 (22.64) .007 Role Function 50.97 (39.26) 40.40 (38.25) .036 Social Function 59.87 (33.46) 48.28 (36.81) .012 Cognitive Function 49.06 (23.60) 47.12 (23.49) NS

Pain 32.12 (23.86) 23.30 (23.47) .004 Mental Health 54.32 (23.23) 47.35 (21.86) .018 Energy/Fatigue 47.78 (25.11) 41.87 (23.89) NS

Health Distress 48.81 (27.55) 38.08 (25.37) .002 Overall Quality of Life 33.71 (25.58) 32.58 (24.86) NS

Health Transition 61.45 (30.58) 62.37 (28.21) NS

Page 22: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

Linear Regression Comparing Change Linear Regression Comparing Change in QoL by Sitein QoL by Site

At an alpha level of 0.05, the TAC subgroup was found to have reported significantly greater adjusted QoL improvements over one month in 14 of 19 dimensions

6 of 8 HAT-QoL dimensions included overall function, health worries, illness mastery, medication worries, financial worries, and provider trust

8 of 11 MOS-HIV include general health perceptions, physical function, role function, pain, energy/fatigue, health distress, mental health, and overall QoL.

Page 23: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

Adjusted HAT-QoL Change Over 1 Month Adjusted HAT-QoL Change Over 1 Month QoL Dimension TAC WC b(se)a p-value

HAT-QoL, mean (SD) Overall Function +11.1 (26.5) +1.3 (21.9) 11.7 (3.6) 0.001 Disclosure Worries +1.2 (25.7) -2.2 (24.9) 5.3 (3.6) NS

Health Worries +13.3 (32.2) +0.5 (28.1) 16.2 (4.2) <0.001 Financial Worries +3.2 (22.5) -4.2 (26.2) 7.0 (3.5) 0.046 Illness Mastery +5.5 (30.2) -3.2 (26.7) 11.4 (4.2) 0.008 Life Satisfaction +10.8 (32.6) +6.9 (28.3) 6.8 (4.3) NS

Medication Worries +7.9 (29.7) -0.9 (27.0) 10.9 (3.7) 0.004 Provider Trust +0.7 (24.1) -1.3 (25.8) 11.0 (3.6) 0.002

a Unstandardized regression results for site-of-care (WC=0, TAC=1) after adjusting for the following: baseline quality of life score, educational attainment, employment status, loss of a spouse, cough, TB, chronic diarrhea, weight loss, swollen lymph nodes, and candidiasis.b Effect size for changes in HAT-QoL and MOS-HIV scores were arbitrarily interpreted in terms of small (-5.0-5.0), moderate (6.0-16.0), or large ( 17.0) changes in quality of life.

Page 24: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

Adjusted MOS-HIV Change Over 1 Month Adjusted MOS-HIV Change Over 1 Month

QOL Dimension TAC WC b(se)b

p-value

MOS-HIV , mean (SD) General Health Perceptions +11.1

(24.0)+0.7 (15.5) 10.0 (3.3) 0.003

Physical Function +10.3 (28.8)

+0.5 (22.4) 16.0 (3.7) <0.001

Role Function +11.3 (44.7)

-0.5 (42.0) 18.3 (6.3) 0.004

Social Function +2.6 (37.4)

-2.4 (41.6) 9.7 (5.2) NS

Cognitive Function +2.8 (25.3)

-0.2 (23.2) 4.4 (3.5) NS

Pain +17.9 (28.7)

+8.3 (25.8) 12.7 (3.6) 0.001

Mental Health +2.8 (26.0)

-1.1 (21.8) 7.9 (3.3) 0.018

Energy/Fatigue +8.9 (26.1)

+0.5 (25.1) 10.2 (3.6) 0.004

Health Distress +7.6 (30.8)

+2.5 (26.8) 12.8 (4.2) 0.003

Overall Quality of Life +15.8 (32.5)

+2.0 (32.3) 10.1 (4.2) 0.017

Health Transition +14.8 (31.7)

+6.3 (32.8) 4.6 (4.0) NS

Page 25: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

DiscussionDiscussion Patients from the TAC versus the WC sites demonstrated

significantly greater (moderate to large in size) improvement across the majority of QOL dimensions assessed over one month

Since baseline QOL was higher for the TAC site, this group had less “room” on the scale to improve and, thus, their significantly larger increase is more surprising

The differences in improvement were independent of baseline QOL differences between the sites

Page 26: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

DiscussionDiscussion At baseline there were some clinical parameters on which the sites differed that

might have suggested differences in QOL change were in part due to greater illness

However, these differences sometimes indicated greater illness in the TAC group (i.e., swollen lymph nodes, chronic diarrhea) and sometimes indicated greater illness in the WC group  (i.e., cough, thrush, TB, and past hospitalization)

We adjusted for significant symptomatic differences in these analyses– QoL site differences were independent of these variables

Similarly, at baseline there were some sociodemographic parameters on which the sites differed. – In adjusted analyses, site QOL change differences were independent of these

differences

Page 27: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

DiscussionDiscussion Our findings may reflect the fact that TAC sites, particularly,

provide psychosocial support and a familiar cultural context for health care

As the primary system of health care for more than 80% of

Africa, TAC provides patients culturally-valued understandings of HIV/AIDS

As such, TAC sites may prove to be the most accessible and cost-effective way to bolster access to health care for resource-poor areas and improve the QOL for those living and dying with HIV/AIDS.

Page 28: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

Role of Traditional Healers Role of Traditional Healers Thus far, traditional healers remain underutilized partners in the

delivery of HIV care

In the era of ART rollout, they could be an invaluable, community-based resource for linkage to HIV testing, education and prevention, and treatment for OIs such as TB

As community healthcare providers who are considered local authorities on issues of health and healing, they could be invaluable in implementing directly delivered therapy to improve ART adherence in rural areas where there are not enough WC professionals to monitor patients adherence.

Page 29: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

Collaboration Collaboration Many traditional healers in Zimbabwe readily express their

limitations in treating HIV/AIDS and are eager to collaborate with WC providers

The Zimbabwe National Traditional Healers Association (ZINATHA) has actively worked with the Zimbabwean Medical Research Council to establish protocols for testing traditional remedies thought to be efficacious in treating OIs associated with HIV

The time appears right, then, for a productive engagement and

study of collaborative care with traditional African healers.

Page 30: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

LimitationsLimitations Participants were not randomized to the two subgroups

Participants were a consecutively recruited, rural sample, so the representativeness of our findings to urban populations, remains unclear

Information about those who we missed in the study is not known, limiting our ability to clarify potential biases

The sample was a highly symptomatic one (76% met WHO definition for AIDS and 89% of the WC group had TB)

The sample also has an over representation of women

Finally, QOL changes were only assessed for one month of follow-up.

Page 31: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

ConclusionConclusion Our finding suggest that confirmatory studies are needed in

larger, more diverse African populations

If confirmed, these findings will add more weight to recommendations to develop, pilot test, and evaluate culturally-tailored interventions to better engage African PLWHA in HIV care using traditional healers

Page 32: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

AcknowledgmentsAcknowledgments

The National Institute of Mental Health (1R03MH62250-01) The Social Science Research Council Zimbabwe’s National Association of Traditional Healers Zimbabwe’s Medical Research Council The People of Chipinge – Drs. Susan Tross, Curtis Dolezal & William C. Holmes HIV Center for Clinical and Behavioral Studies

Dr. Taylor is a postdoctoral fellow supported by a training grant from the National Institute of Mental Health (T32 MH19139, Behavioral Sciences Research in HIV Infection; Principal Investigator: Anke A. Ehrhardt, Ph.D.) at the HIV Center for Clinical and Behavioral Studies at NY State Psychiatric Institute and Columbia University (P30-MH43520; Principal Investigator: Anke A. Ehrhardt, Ph.D.)

Page 33: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

My TeamMy Team

(Back row) Fungai, Simon, Faith, Tonya, Tsaka (the cat) & Carrinah, (Front row) Bernard, Shumba (the dog) and Ines.

(Missing) Mzilikazi (our other useless cat)

Page 34: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

MaShumMaShuma a

Chaivzo!Chaivzo!

Page 35: Tonya N. Taylor, Curtis Dolezal, Susan Tross,  and William C. Holmes

Medical Pluralism is the NormMedical Pluralism is the Norm

PreferencePreference

SiteSite WC only TAC only Combined

WC 35.5% .5% 64.0%

TAC .0% 9.0% 91.0%

Total 17.8% 4.8% 77.5%Chi-

Square95.617a df=2 Sig=.000

Chi-Square for Treatment Site vs. Treatment Preference