The context of dropping out of ART programs in KwaZulu-Natal, South Africa P. Stanley Yoder Macro International Sibongile Mkhize Siyabonga Nzimande Health Systems Trust

Objectives Consider experiences of ART patients who stopped taking their ARVs Compare their situation with that of current patients Explain how and why patients stop taking ARVs

Consider experiences of ART patients who stopped taking their ARVs

Compare their situation with that of current patients

Explain how and why patients stop taking ARVs

Paper drawn from wider study: sites and sample Five sites; each site a hospital in KZN that began an ART programme in 2004 Sample of 180 ART patients (adults +18 years) 60 patients with TB history 60 patients without a TB history 60 former patients no longer enrolled Sample of 30 (ART) health care providers Interviews were recorded, transcribed and translated

Five sites; each site a hospital in KZN that began an ART programme in 2004

Sample of 180 ART patients (adults +18 years)

60 patients with TB history

60 patients without a TB history

60 former patients no longer enrolled

Sample of 30 (ART) health care providers

Interviews were recorded, transcribed and translated

Institutional Participation Project directed by MEASURE Evaluation Funded by USAID SA Mission and core funds Close collaboration with DOH, KZN Implemented by Health Systems Trust HST: research institute for health research in SA Main office in Westville http://www.hst.org.za

Project directed by MEASURE Evaluation

Funded by USAID SA Mission and core funds

Close collaboration with DOH, KZN

Implemented by Health Systems Trust

HST: research institute for health research in SA

Main office in Westville

http://www.hst.org.za

Durban Empangeni Newcastle Ingwavuma Tugela Ferry 1 urban, 2 semi-urban, 2 rural sites

Background Many studies of adherence available in lit Few studies of attrition and dropping out Overview of attrition studies: Rosen et al. 2007 20% after 6 months 25% after 12 months 38% after 24 months Measurement of attrition important for program evaluation

Many studies of adherence available in lit

Few studies of attrition and dropping out

Overview of attrition studies: Rosen et al. 2007

20% after 6 months

25% after 12 months

38% after 24 months

Measurement of attrition important for program evaluation

Experiences of ART Patients ART patients understand what they must do They have retained the advice provided Patients find it easy to remind themselves Cell phones, alarm clocks, treatment supporters A few said they “feel it in their body” when it’s time to take the pills (longer time users) Patients miss doses when routine changes Holidays, travel, visitors Nearly all were successful in taking ARVs with minimal missing of doses

ART patients understand what they must do

They have retained the advice provided

Patients find it easy to remind themselves

Cell phones, alarm clocks, treatment supporters

A few said they “feel it in their body” when it’s time to take the pills (longer time users)

Patients miss doses when routine changes

Holidays, travel, visitors

Nearly all were successful in taking ARVs with minimal missing of doses

Circumstances of dropouts Former patients lived with family members 47 of 52 unmarried One-third had a boyfriend or girlfriend 10 of 52 employed at least part-time One-third had a government grant Only three said they had adequate income

Former patients lived with family members

47 of 52 unmarried

One-third had a boyfriend or girlfriend

10 of 52 employed at least part-time

One-third had a government grant

Only three said they had adequate income

Time periods on and off ART ART patients have monthly appointments Patients considered dropouts if they missed two appointments Time on ART varied from 2 months to 4 years Average time on ARVs: 14.1 months Average time since stopping ARVs: 7.3 months

ART patients have monthly appointments

Patients considered dropouts if they missed two appointments

Time on ART varied from 2 months to 4 years

Average time on ARVs: 14.1 months

Average time since stopping ARVs: 7.3 months

Factors that affect attrition: our expectations Rates of disclosure of HIV status Disclosure a sign of acceptance Majority told only a few people Missing doses Periodic missing of doses lead to stopping? Patient did not have trouble taking pills on time Stopping ARVs all at once?

Rates of disclosure of HIV status

Disclosure a sign of acceptance

Majority told only a few people

Missing doses

Periodic missing of doses lead to stopping?

Patient did not have trouble taking pills on time

Stopping ARVs all at once?

Experiences of Former ART Patients (Dropouts) Side effects One-fourth cited side effects as main reason for stopping “ The pills don’t treat me well” Lack of money For food For transport to health facility More marginal social and financial situations than ART patients who remain Moving away Other Religious conversion Traditional medicine Feeling better

Side effects

One-fourth cited side effects as main reason for stopping

“ The pills don’t treat me well”

Lack of money

For food

For transport to health facility

More marginal social and financial situations than ART

patients who remain

Moving away

Other

Religious conversion

Traditional medicine

Feeling better

Conclusion: circumstances of stopping ARVs Vulnerable social situation with minimal social support Marginal economic situation with very few with a reliable income Struggle with side effects (women)

Vulnerable social situation with minimal social support

Marginal economic situation with very few with a reliable income

Struggle with side effects (women)

Disclaimer MEASURE Evaluation is funded by the U.S. Agency for International Development (USAID) through Cooperative Agreement GPO-A-00-03-00003-00 and is implemented by the Carolina Population Center at the University of North Carolina at Chapel Hill in partnership with Constella Futures, John Snow, Inc., Macro International Inc., and Tulane University. The views expressed in this presentation do not necessarily reflect the views of USAID or the United States Government.

MEASURE Evaluation is funded by the U.S. Agency for

International Development (USAID) through Cooperative

Agreement GPO-A-00-03-00003-00 and is

implemented by the Carolina Population Center at the

University of North Carolina at Chapel Hill in partnership

with Constella Futures, John Snow, Inc., Macro

International Inc., and Tulane University. The views

expressed in this presentation do not necessarily reflect the

views of USAID or the United States Government.

Thank you Stan Yoder Sibongile Mkhize Siyabonga Nzimande S’celo Dlamini Email: [email_address] Website: www.hst.org.za

Stan Yoder

Sibongile Mkhize

Siyabonga Nzimande

S’celo Dlamini

Email: [email_address]

Website: www.hst.org.za