Quality of life of people living with HIV/AIDS in Finland

121 Pages·2017·2.13 MB·English

Quality of life of people living with HIV/AIDS in Finland

Nuno M. Ribeiro Nobre

Department of Public Health
Faculty of Medicine
Doctoral Programme in Population Health (DocPop)
University of Helsinki

ACADEMIC DISSERTATION

To be presented, with the permission of the Faculty of Medicine of the University of Helsinki, for
th
public examination in Lecture Hall 1 of the Biomedicium Helsinki, on October 12 at 12 pm.

Helsinki 2018
Supervisors Professor Risto P. Roine, MD, PhD
Research Centre for Comparative Effectiveness and Patient Safety,

University of Eastern Finland, Kuopio

Helsinki University Hospital, University of Helsinki

Professor (emeritus) Harri Sintonen, PhD

Department of Public Health, Faculty of Medicine,

University of Helsinki

Docent Jussi Sutinen, MD, PhD

Division of Infectious Diseases, Inflammation Center, Helsinki

University Hospital,
University of Helsinki

Reviewers Professor Tarja Suominen, PhD
Faculty of Social Sciences, Health Sciences

University of Tampere

Docent Jaana Syrjänen, MD, PhD
Tampere University Hospital

University of Tampere

Opponent
Professor Knut Stavem, PhD
Professor of Pulmonary Medicine,
Institute of Clinical Medicine,
University of Oslo, Campus Ahus, Lørenskog, Norway
and
Consultant in the Department of Pulmonary Medicine, and HØKH
Health Services Unit Akershus University Hospital, Lørenskog, Norway

Cover by Anita Tienhaara

Cover photo by Outi Debman

Dissertationes Scholae Doctoralis Ad Sanitatem Investigandam Universitatis Helsinkiensis

ISSN 2342-3161 (print)
ISSN 2342-317X (online)
ISBN 978-951-51-4487-4 (paperback)
ISBN 978-951-51-4488-1 (PDF)

Unigrafia
Helsinki 2018
ABSTRACT

Antiretroviral therapy has reduced HIV-related morbidity and mortality. In the daily life of people
living with HIV (PLWHIV), quality of life (QoL) has become a key concern, gaining increasing
attention in the HIV research field. Low QoL influences treatment adherence, medical treatment
outcomes, and access to care. The purpose of this study is to explore the factors influencing the QoL
of PLWHIV in Finland and to compare it with the QoL of Portuguese PLWHIV, of the general
population, and of patients with other chronic diseases (asthma, diabetes, and arthritis), and thus to
provide healthcare professionals with tools to identify individuals most at risk for impaired QoL.
Finnish data were collected by self-administered questionnaires (WHOQOL-HIV-BREF, 15D and
our own questionnaire) and from patients’ electronic medical records. Individuals were recruited from
four different sites (Infectious Disease Clinic of Helsinki University Hospital, Hivpoint, Hiv Finland,
and Helsinki Deaconess Institute). All the engaged participants received care and were followed up
in the Infectious Disease Clinic of Helsinki University Hospital. In Study I, the properties of the
Finnish version of the WHOQOL-HIV-BREF were explored by comparing the results obtained with
the Finnish WHOQOL-HIV-BREF version with those obtained with the generic 15D instrument. In
Study II, the QoL of PLWHIV was compared in Finnish and in Portuguese PLWHIV. This
comparison was based on the results obtained with the WHOQOL-HIV-BREF instrument. Study III
explored the influence of sociodemographic and HIV-related variables on the QoL, measured by the
WHOQOL-HIV-BREF, of PLWHIV in Finland. Study IV assessed HIV-related self-stigma and the
impact of self-stigma on health-related QoL (HRQoL) of the Finnish PLWHIV measured both by the
WHOQOL-HIV-BREF and the 15D instruments. In Study V, the HRQoL of PLWHIV in Finland
was compared with that of the general population and of patients with other chronic diseases (asthma,
diabetes, and arthritis); in that study, the HRQoL was measured with the 15D instrument.
A total of 453 PLWHIV from Finland were included in the thesis study. The most common modes of
transmission were sexual contact among men having sex with men (55%) and among heterosexuals
(33%). Of all the participants, 95% were receiving combination antiretroviral therapy (cART). The
Finnish version of the WHOQOL-HIV-BREF showed satisfactory psychometric properties.
However, the ability of the WHOQOL-HIV-BREF to assess physical and physiological dimensions
of QoL was poor when compared to that of the 15D. PLWHIV in Finland reported better QoL than
did those living in Portugal after controlling for sociodemographic and HIV-related variables. The
QoL of PLWHIV in Finland is strongly influenced by psychological and socio-demographic variables
and HIV-related stigma. HIV-related variables were not associated with the QoL in this population
with well-controlled HIV infection. High levels of self-stigma were negatively associated with
HRQoL and QoL and strongly associated with socio-demographic variables. When compared with
the HRQoL of the general population, PLWHIV’s HRQoL was statistically significantly and
clinically importantly lower, but did not differ from that of patients with the other chronic diseases
(asthma, diabetes, and arthritis). PLWHIV were worst off in the psychological and sexual activity
dimensions in both comparisons.
Psychosocial factors are the core of the QoL of PLWHIV. In the era of modern cART, HIV-related
factors do not seem to be associated with the QoL of PLWHIV. Further efforts must be devoted to
identifying and developing adequate interventions to improve PLWHIV’s QoL.
TIIVISTELMÄ
Antiretroviraalilääkitys on vähentänyt HIV:stä johtuvaa sairastavuutta ja kuolleisuutta. HIV-
potilaiden jokapäiväisessä elämässä keskeiseksi huolenaiheeksi on noussut elämänlaatu, johon
kiinnitetään yhä enemmän huomiota HIV-tutkimuksessa. Elämänlaatu vaikuttaa hoitoon
hakeutumiseen, siihen sitoutumiseen ja hoitotuloksiin. Tämän tutkimuksen tarkoituksena on selvittää
tekijöitä, jotka vaikuttavat HIV-potilaiden elämänlaatuun Suomessa ja verrata sitä Portugalin HIV-
potilaiden, suomalaisen väestön ja eräitä muita kroonisia tauteja(astma, diabetes ja niveltulehdus)
sairastavien potilaiden elämänlaatuun. Tutkimuksen tulokset tarjoavat terveydenhuollon
ammattilaisille työkaluja niiden potilaiden tunnistamiseen, joiden elämänlaatu on eniten vaarassa
heikentyä.
Suomen aineisto kerättiin kyselylomakkeilla, jotka vastaajat täyttivät itsenäisesti (WHOQOL-HIV-
BREF, 15D ja oma kyselylomake) sekä potilaan hoitotiedoista. Tutkimukseen osallistujat saatiin
neljästä eri kohteesta (Helsingin yliopistollisen keskussairaalan Infektiosairauksien poliklinikka,
Hivpoint, Positiiviset ry ja Helsingin Diakonissalaitos). Kaikki osallistujat saivat hoitoa ja olivat
seurannassa Helsingin yliopistollisen keskussairaalan Infektiosairauksien poliklinikalla.
Tutkimuksessa I tutkittiin WHOQOL-HIV-BREF:n suomalaisen version ominaisuuksia
vertailemalla, sillä saatuja tuloksia geneerisellä 15D-mittarilla saatuihin tuloksiin suomalaisilla HIV-
potilailla. Tutkimuksessa II verrattiin HIV-potilaiden elämänlaatua WHOQOL-HIV-BREF:llä
mitattuna Suomessa ja Portugalissa. Tutkimuksessa III selvitettiin sosiodemografisten ja HIV:iin
liittyvien muuttujien yhteyttä Suomessa asuvien HIV-potilaiden elämänlaatuun WHOQOL-HIV-
BREF:lla mitattuna. Tutkimuksessa IV analysoitiin HIV:n aiheuttamaa stigmaa ja stigman vaikutusta
terveyteen liittyvään elämänlaatuun Suomessa asuvilla HIV-potilailla. Mittareina olivat sekä
WHOQOL-HIV-BREF että 15D. Tutkimuksessa V verrattiin Suomessa asuvien HIV-potilaiden
elämänlaatua saman ikäiseen suomalaisväestöön sekä eräitä muita kroonisia tauteja (astma, diabetes
ja niveltulehdus) sairastaviin. Tässä tutkimuksessa elämänlaatua mitattiin 15D:llä.
Tutkimukseen osallistui Suomessa yhteensä 453 HIV–potilasta. Yleisimmät tartuntatavat olivat
miesten välinen seksi (55 %) ja heteroseksi (33 %). Kaikista osallistujista 95 % sai antiretroviraalista
yhdistelmähoitoa (cART). WHOQOL-HIV-BREF:n suomalainen versio osoittautui psykometrisiltä
ominaisuuksiltaan tyydyttäväksi. WHOQOL-HIV-BREF:n kyky arvioida elämänlaadun fyysisiä ja
fysiologisia ulottuvuuksia oli kuitenkin heikko verrattuna 15D:n (I). HIV-potilaiden elämänlaatu oli
parempi Suomessa kuin Portugalissa, kun sosiodemografiset ja HIV:iin liittyvät muuttujat oli
vakioitu. Molemmissa maissa elämänlaatuun vaikuttivat voimakkaasti fyysiset, psykologiset ja
riippumattomuuteen liittyvät tekijät (II). HIV-potilaiden elämänlaatuun Suomessa vaikuttivat
voimakkaasti sosiodemografiset ja psykologiset tekijät. HIV:iin liittyvät muuttujat eivät olleet
yhteydessä elämänlaatuun tässä potilasjoukossa, jonka HIV-infektio oli hyvässä hoitotasapainossa
(III).
Stigman samoin kuin taloudellisten vaikeuksien yhteys elämänlaatuun oli negatiivinen ja stigmaan
olivat yhteydessä negatiivisesti mm. yhdessä asuminen ja miessukupuoli (IV). Verrattuna ikä- ja
sukupuolivakioituun väestöön HIV-potilaiden elämänlaatu oli tilastollisesti merkitsevästi ja
kliinisesti merkittävästi huonompi, mutta se ei eronnut muita kroonisia tauteja (astma, diabetes ja
niveltulehdus) sairastavien elämänlaadusta. Huonoin tilanne HIV-potilailla oli molemmissa
vertailuissa elämänlaadun psyykkisillä ja sukupuolielämän ulottuvuuksilla (V).
Psykososiaaliset tekijät ovat HIV-potilaiden elämänlaadun ytimessä. Nykyaikaisen
antiretroviraalisen yhdistelmähoidon aikakaudella HIV:iin liittyvät tekijät eivät näytä olevan
yhteydessä HIV-potilaiden elämänlaatuun. Lisätoimia tarvitaan asianmukaisten toimenpiteiden
tunnistamiseen ja kehittämiseen HIV-potilaiden elämänlaadun parantamiseksi.
ABRREVIATIONS

15D 15-dimensional health-related quality of life instrument
ACTG AIDS Clinical Trials Group Adherence
AIDS Acquired Immunodeficiency Syndrome
AIDS-HAQ AIDS Health Assessment Questionnaire
AMOS Analysis of moment structures
AUDIT Alcohol Use Disorders Identification Test
cART combination Antiretroviral Therapy
CD4 Cluster of differentiation 4 cells
CDC Centers for Disease Control and Prevention
CFA Confirmatory factor analysis
CFI Comparative fit index
CI Confidence interval
CIndex Condition index
DF Degrees of freedom
EFA Exploratory factor analysis
EORTC QLQ-C30 European Organization for Research and Treatment of Cancer core
Quality of Life Questionnaire
EQ-5D-3L 3-level version of the EuroQol Quality of Life Questionnaire
EQ-5D EuroQol Quality of Life Questionnaire
FAHI Functional Assessment of HIV Infection
GHSA General Health Self-assessment
H2000 National health 2000 health examination survey
H2011 National health 2011 health examination survey
HAT-QOL HIV/AIDS Quality of Life Questionnaire
HIV Human Immunodeficiency Virus
HIV-QL31 HIV Quality of Life Questionnaire
HOPES HIV Overview Problems Evaluation System
HRQoL Health-Related Quality of Life
HR(QoL) Health-related quality of life/quality of life
MANOVA Multivariate analysis of variance
MANCOVA Multivariate analysis of covariance
MOS-HIV Medical outcomes Study HIV
MQOL-HIV Multidimensional Quality of Life Questionnaire for HIV/AIDS
MSM Men who have sex with men
PLWHIV People Living With HIV
PWID People who inject drugs
QoL Quality of Life
QWB Quality of Well-being Scale
RMSEA Root mean square error of approximation
SD Standard deviation
SES Socioeconomic status
SF-36 36-item Short-Form Survey
SIP Sickness Impact Profile
SPSS Statistical Package for Social Sciences
UNAIDS Joint United Nations Programme on HIV/AIDS
USA United States of America
THL National Institute for Health and Welfare
VIF Variance inflation factor
UK United Kingdom
WHO World Health Organization
WHOQOL The World Health Organization Quality of Life
WHOQOL-BREF WHO Quality of Life short-version questionnaire
WHOQOL-HIV WHOQOL-HIV Instrument
WHOQOL-HIV-BREF WHO Quality of Life HIV short-version questionnaire
Contents
ABSTRACT........................................................................................................................................... 3
TIIVISTELMÄ (Finnish Abstract)…………………………………………………………………. 5
ABBREVIATIONS............................................................................................................................... 7
LIST OF ORIGINAL PUBLICATIONS............................................................................................. 10
1. INTRODUCTION........................................................................................................................... 11
2. REVIEW OF THE LITERATURE................................................................................................ 13
2.1. Global and Finnish epidemiology of HIV................................................................................. 13
2.2. General concept of quality of life.............................................................................................. 16
2.3. Concept of health-related quality of life.................................................................................... 17
2.3.1. 15D instrument............................................................................................................... 18
2.4. Disease-specific instruments for measuring the quality of life of PLWHIV…………………. 22
2.4.1. WHOQOL-HIV-BREF instrument................................................................................ 26
2.5. Factors associated with the quality of life of people living with HIV........................................ 28
2.5.1. Sociodemographic.......................................................................................................... 28
2.5.2. HIV-related clinical factors............................................................................................ 30
2.5.3. Psychosocial factors....................................................................................................... 32
2.6. Quality of life of HIV-positive versus HIV-negative individuals……………………………. 40
3. AIMS.................................................................................................................................................. 43
4. METHODS....................................................................................................................................... 44
4.1. Subjects, study designs and methods........................................................................................ 44
4.2. Ethical considerations............................................................................................................... 47
4.3. Data analysis............................................................................................................................. 48
5. RESULTS......................................................................................................................................... 52
5.1. Participants’ characteristics...................................................................................................... 52
5.2. Psychometric properties of the WHOQOL-HIV-BREF and comparison with the
generic 15D health-related quality of life instrument (Study I)................................................. 58
5.3. Quality of life comparison between PLWHIV in Finland and Portugal (Study II).................... 61
5.4. Determinants of quality of life in PLWHIV in Finland (Study III)............................................ 62
5.5. Self-Stigma and health-related quality of life (Study IV) ......................................................... 64
5.6. Comparison of health-related quality of life between PLWHIV, general population
and patients with chronic diseases (asthma, diabetes and arthritis) in Finland (Study V)…….. 68
6. DISCUSSION................................................................................................................................... 70
6.1. Psychometrics of the 15D and the Finnish version of the WHOQOL-HIV-BREF (Study I)... 70
6.2. Quality of life of the PLWHIV in Finland versus in Portugal (Study II)................................... 72
6.3. Quality of life determinants of PLWHIV in Finland (Study III)............................................... 74
6.4. HIV-related self-stigma and its association with HR(QoL) (Study IV)……………................ 76
6.5. Health-related quality of life of PLWHIV compared to that of the general population and
to that of patients with selected chronic diseases (Study V)……………………………….... 78
6.6. Strengths and limitations......................................................................................................... 81
6.7. Implications and recommendations…………………………………………………………. 82
7. CONCLUSIONS.............................................................................................................................. 84
8. ACKNOWLEDGEMENTS............................................................................................................ 86
9. APPENDIXES…………………………………………………………………………………….. 88
10.1. 15D…………………………………………………………………………………………. 88
10.2. WHOQOL-HIV-BREF…………………………………………………………………….. 91
10.3. Own questionnaire………………………………………………………………………….. 94
10. REFERENCES............................................................................................................................... 95
ORIGINAL PUBLICATIONS………………………………………………………………….. 121
LIST OF ORIGINAL PUBLICATIONS
This thesis is based on the following publications which are referred to in the text by their Roman
numerals:

I. Nobre, N., Pereira, M., Roine, R. P, Sutinen, J., & Sintonen, H. (2016) Are the
WHOQOL-HIV-Bref and 15D adequate measures of quality of life in HIV-infected
adults? HIV Nursing, 16(4), 104-112.

II. Nobre, N., Pereira, M., Sutinen, J., Canavarro, M. C., Sintonen, H., & Roine, R.P. (2016)
Quality of life of people living with HIV/AIDS: a cross-country comparison study of
Finland and Portugal. AIDS Care, 28(7), 873-877.

III. Nobre, N., Pereira, M., Roine, R. P., Sintonen, H., & Sutinen, J. (2017) Factors associated
with the quality of life of people living with HIV in Finland. AIDS Care, 29(8), 1074-
1078.

IV. Nobre, N., Pereira, M., Roine, R. P., Sutinen, J., & Sintonen, H. (2018) HIV-related self-
stigma and health-related quality of life of people living with HIV in Finland. J Assoc
Nurses AIDS Care, 29(2), 254-265.

V. Nobre. N., Roine, R. P., Sutinen, J., & Sintonen, H. Health-related quality of life of people
living with HIV/AIDS: a cross-sectional comparison with general population, and patients
with selected chronic diseases. Submitted.

The original publications are reproduced with permission of the copyright holders.