EXPLORING AND DEFINING WHATQUALITY OF LIFE MEANS
FOR COMMUNITIES:
An exploratory survey into thequality of life of PLHIV in 15 FTCsImane Sidibé (presenting)
Mariam Diallo Christopher Duncombe José M. Zuniga

The Fast-Track Cities initiative takes a holistic approach to programmatictarget attainment, recognizing the importance of improving the healthrelated quality of life (HR-QOL) of people living with HIV (PLHIV) by: Exploring the social, political, and economic factors affecting theoverall wellbeing of PLHIV
 Using QoL indicators to measure and understand the barriers toquality of life among PLHIV

 Leveraging QoL data to inform the HIV response

Development and fielding made possible through support from Viiv Healthcare

OVERALLWELLBEING

SOCIAL PARTICIPATION AND
INTERPERSONALRELATIONSHIPS

Emotional
wellbeing:mental health,contentment,
self-concept,
stress, outlook...

Social inclusion:
engagement androles in community,
supportnetworks/services,
stigma anddiscrimination…

Physicalwellbeing:
overall health,activities of dailyliving, cognitive
impairments…

Interpersonal
relationships:
support, maintaining
relationships,
disclosure, sexualquality of life…

BASIC NEEDS AND QUALITY
OF HEALTH SERVICES

Economic/Structural:
employment, education,
housing, financial, foodsecurity, access tohealthcareCross sectional one-time online self-administered survey

Survey included 20 Fast-Track Cities

A target sample size of 300 per city

45 questions adapted from the following validated tools:– WHOQoL Survey– WHOQoL Survey HIV– IAPAC ATLIS Survey– People Living with HIV Stigma Index– Integrated HIV Bio-behavioral Surveillance (IBBS) Survey– CDC HRQoL– MOS-HIV

Translated into 8 languages to address any barriers that may confound results:
French, Spanish, Portuguese, Romanian, Dutch, German, Thai, and GreekEUROPE

AthensBerlinLisbonMadridAFRICA

BamakoDar es Salaam
DurbanNairobiNORTH
AMERICAMiami
New York City
Montreal

LATIN AMERICA
AND THECARIBEAN

Buenos Aires
Salvador de Bahia
Santiago

ASIA/Pacific

BangkokTotal number of respondents to date:

Respondent Sex Distribution

3206
87%
76%

70%

68%
60%

FemaleMaleTransgender

38%
30%
24%
18%
11%
2%

AfricaEUROPE(17%)

AFRICA
(35%)

13%

1%

North America

Asia/Pacific

NORTH AMERICA(12%)

EuropeLatin America

LATIN AMERICA &CARIBEAN
(29%)

ASIA
PACIFIC(7%)

Most participants (75%) are over the age of 30 with some noteworthy differences in age by region. Respondents
from North America skew older while those from African and Asian/Pacific nations are generally younger.
Respondent Age Distribution

60+
50-59

10%

23%

26%
47%

34%

29%

29%

20%
13%

Africa

13%
22%

30%

25-29
18-24

5%

7%
16%

40-49
30-39

19%

17%
12%

21%

18%
20%

10%
3%

11%

Asia/Pacific

EuropeLatin America

4%North America

32%

Distribution of Respondents on ART

Length of time since diagnosis of HIV

40%
34%

22%

25%

28%

27%

8%

5%

North America> 1 year ago

7%

Asia/Pacific

1-4 years ago

90%
4%
86%

North America

35%

Africa33%

61%

Europe5-9 years ago

60%

21%

16%

10%

Africa

27%

24%

14%

7%

Europe

86%

35%

33%
26%

9%

Asia/Pacific

59%

36%

Latin America

Latin America
10+ years ago

Yes, but miss doses

Consistently on ART

On average, 38% of respondents indicated a diagnosis of anxiety and/or depression across all regions. Respondents
in Europe and North America reported diagnosis 1.5 to almost 4 times more than other regions.
Distribution of Respondents Diagnosed with Anxiety
and/or Depression
Latin America

Results from the 2010 ATLIS(AIDS Treatment for Life InternationalSurvey) were notably lower:35%

Europe49%

Latin America: 28%
Europe: 27%

Asia/PacificAsia/Pacific: 25%

15%

North America: 47%

North America
Africa59%

37%

Africa: 13%

Almost one third (32%) of the respondents indicated having disclosed their status
to family members. Disclosure to friends (30 %) and members of the community(20%) was slightly higher in North America and Europe compared to other regions.
EuropeNever disclosed
Employer/Colleagues

North America
Never disclosed

2%

Employer/Colleagues

9%Community members

15%

Community members

Spouse/intimate

15%

Spouse/intimate

Friends
Family members

33%
25%

1%
8%
24%
15%

Friends
Family members

28%
24%

Africa
Never disclosed

Latin America

5%

Never disclosed

4%

Employer/Colleagues

9%

Employer/Colleagues

5%Community members

10%

Community members

6%

Spouse/intimate

19%

Spouse/intimate

Friends

21%

Friends

Family members

36%

Family members

18%
30%
36%

Asia/Pacific
Never disclosed
Employer/Colleagues
Community members9%5%Spouse/intimate
Friends
Family members

Percentages for disclosure to family was
higher among respondents from African,Asian, and Latin American regions (37%).
Disclosure to community members (7%)
and at the workplace (8%) was lower thanin other regions.

12%

21%
16%
38%

Though stigma and discrimination was an issue across all regions, respondents in Africancountries more frequently reported experiencing stigma and/or discrimination in both theircommunities (51%) and healthcare facilities (36%).
Respondents Experiencing Stigma and/or Discrimination By A
Healthcare Facility Or Healthcare Worker

Respondents Experiencing Stigma and/or Discrimination By
Their Community
51%

In the ATLIS 2010 data,36%
respondents reported stigma
and/or discrimination as
being the main concern whenliving with HIV:

48%

29%

14%

AfricaNorth America Asia/Pacific

EuropeAfrica: 76%
N.
24% America: 90%
Asia/Pacific: 91%
Europe: 74%
L. America: 91%

Latin America

Africa

20%
15%

15%
11%

North America Asia/Pacific

EuropeLatin America

Many respondents (40%) reported having a positive outlook on life,
with African respondents less likely to report a positive outlook whencompared to other regions.
Respondents Reporting a Positive and "Moderately" Positive Outlook On Life

48%
43%
37%

35%
31%
27%

Africa29%
25%

North America

27%

24%

Asia/PacificPositive
Moderately positiveEurope

Latin America

Distribution of Respondent Overall Quality of Life
49%

45%

42%

43%
37%

AfricaNorth America

Asia/PacificVery satisfied

EuropeSatisfiedLatin America

MOST RESPONDENTS(APPROX. 40%)REPORTED BEING
SATISFIED WITH THEIROVERALL QUALITY OF
LIFE. ONE QUARTER
WERE “VERY”
SATISFIED.
RESPONSES WERE
SIMILAR ACROSS ALL
REGIONS.

10+ years sincediagnosis
Buenos Aires,
Dar es Salaam,Durban, Salvador
Athens, Santiago
Miami

40% - 50%
50% - 55%74%

On average one quarter of all respondents reported fear ofdisclosure to intimate partners over that last year.
Proportion of PLHIV reported worrying about disclosing their HIV status to intimate partners or theirspouse in the past 12 months

26%

25%

26%

20%

AthensBangkok

29%

27%

26%

19%

BuenosAires

Dar Es
SalaamDurbanMiami

Salvador

Santiago

Distribution of respondents reporting experiencing stigma and/or
discrimination by years since diagnosisExperience in Community

Experience in Healthcare Settings< 10 years sincediagnosis< 10 years sincediagnosis

Bangkok, Buenos Aires

5-10%

Bangkok, Santiago

15%

Salvador, Athens

25-30%

Buenos Aires, Salvador,
Miami

10%

Athens20%

Santiago

40%

Miami, Durban

50-60%

Dar es Salaam69%

Dar es Salaam, Durban

50-60%

Distribution of respondents reporting a “positive” outlook on life among thoseconsistently on ART was comparable across all 8 FTCs.
AthensBangkok

BuenosAires

Dar esSalaam

DurbanMiami

Salvador

Santiago

38%

45%

39%

35%34%

42%

39%

34%

Distribution of respondents reporting being “satisfied” with their overall quality of life
and also consistently on ART.
AthensBangkok

BuenosAires

Dar esSalaam

DurbanMiami

Salvador

Santiago

31%

38%

44%

52%

27%

46%

47%

31%

Top 3 major concerns respondents identified regarding aging withHIV.
1. Decreased mobility,disability

2. Lifelong HIV medicationtaking

3. Decreased life expectancy

Athens (37%)
Buenos Aires (26%)
Salvador de Bahia (42%)
Bangkok (41%)
Dar es Salaam (91%)
Durban (60%)
Miami (63%)
Santiago (44%)
Salvador de Bahia (35%)
Bangkok (18%)
Buenos Aires (37%)
Dar es Salaam (88%)
Durban (50%)
Santiago (47%)

 Understanding the factors playing a key role in

the perceived quality of life remains a key step
to ensuring those already virally suppressed
continue on a good overall health trajectory.

 Pushing towards a more integrated, people-

centered care is the key to addressing
challenges that persist even for those alreadyvirally suppressed i.e stigma anddiscrimination, co-morbidities, aging with HIV,fear of transmission

 Complete success in HIV care and treatment

will be attained when we will reach the “Fourth90”!

Beyond viral suppression (Lazarus JV etal. BMC Medicine 2016 14:94)

ACKNOWLEDGEMENTS
Dissemination Support
AthensBamakoBangkokContributions

Berlin Dr. Laurel Sprague (UNAIDS) Christoforos Mallouris (UNAIDS)

Brussels Andrea Boccardi Vidarte (UNAIDS)
 Luisa Cabral (UNAIDS) Konstantinos Lykopoulos (ViiV) Florence Anam (ICW)-

Bucharest
Buenos Aires-Dar es Salaam Christopher Duncombe (IAPAC)

Durban Paula Munderi (IAPAC)

Lisbon José M Zuniga (IAPAC)

MadridMiami, FLMontréal
Nairobi-Paris
Santiago-Positive Voice
Coalition Plus / ARCAD-SIDA
Dr. Nittaya Phanuphak Pungpapong
Berlin AIDS Hilfe
Schwulenberatung Berlin
Via in Berlin – Netzwerkstelle HIV und Migration
Fixpunkt
VZW Lhiving
SensoaUTOPIA_BXL Founder
Plateforme Prévention Sida
ARAS
Dr. Miguel Pedrola – AHF
Tanzania National Network of People with HIV/AIDS (TANEPHA)
Tanzania National Network of Girls and Young Women Affected and Living with
HIV/AIDS (TANGYWA+)
AIDS Foundation of South Africa
The National Association of PLHIV (NAPWA South Africa)GAT – CheckpointLX
Associao ILGA Portugal
SeisidaEmpower U Community Health center
Maison Plein Coeur
COCQ-SIDA
African Jesuit AIDS NetworkAIDES
Solidarité SIDA
Chile Positivo