Transcript QUALITY OF LIFE ASSESSMENT IN PEOPLE LIVING WITH HIV/AIDS Antonieta Medina Lara HIV/AIDS and STI Knowledge Programme Liverpool School of Tropical Medicine.

QUALITY OF LIFE ASSESSMENT
IN PEOPLE LIVING WITH HIV/AIDS
Antonieta Medina Lara
HIV/AIDS and STI Knowledge Programme
Liverpool School of Tropical Medicine
Why measure Quality of Life?
It takes account of the
individuals’ perceptions of the
benefits of ART
Quality of Life measurement
Multidimensional concept that
focuses on the impact of disease
and its treatment on the wellbeing of an individual
WHO definition of health
“State of complete physical,
mental and social well-being
and not merely the absence of
infirmity and disease”
Quality of life measures
Specific
This type of instrument evaluates a series of health
dimensions specific to a disease.
Generic
These instruments can be used with any population.
They generally cover perceptions on overall health and
also questions on social, emotional and physical
functioning, pain and self-care.
Specific QoL measures in HIV

MOS-HIV

MQoL-HIV

WHOQOL-HIV
MOS-HIV & MQoL-HIV

Assessment of domains that are relevant to
HIV/AIDS

Domains evaluated:

Overall function, sexual function, disclosure worries,
financial worries, HIV mastery, life satisfaction,
medication concerns and provider trust
 Are intended to capture changes in perceived
health that may impact on the other measured
dimensions of quality of life
WHOQOL-HIV
“an individual’s perception of his/her position
in life in the context of the culture and
value systems in which he/she lives, and
in relation to his/her goals, expectations,
standards and concerns”…WHOQOL
Group, 1995.
WHOQOL-HIV
Physical
Psychological
Pain and
discomfort
Energy and
fatigue
Positive feelings
Thinking, learning,
memory and
concentration
Sleep and rest
Mobility
Self-esteem
Body image and
appearance
Activities of
daily living
Negative feelings
Dependence
on medication
or treatment
Spirituality,
religion and
personal beliefs
Working
capacity
Social
relationships
Personal
relationships
Practical
support
Environment
Sex
Financial resources
Health and social
care: availability and
quality
Opportunities for
acquiring new
information and
skills
Participation and
opportunities for
recreation and
leisure
Physical
environments
Transport
Physical safety and
security
Home environment
Skevington, S M, (2002). Advancing cross-cultural research on quality of life: observations drawn from the WHOQOL
development. Quality of life Research; 11:135-144
Generic measures

Framework for evaluating the trade off
between the quality and the quantity of life

Individual’s own valuation of hypothetical
health states, measured in an index that
reflects the value placed on a health state
relative to perfect health or death
Health state valuation instruments

Visual Analogue Scale (VAS)

Standard Gamble (SG)

Time Trade-Off (TTO)
100
Visual Analogue Scale (VAS)
90
80

It is easy to use and achieve high response rates

It is a choice-less assessment
70
60
Please draw a line at the point on
the scale that summarises your
current health status
50
40
30
20
10
Your own health state today
0
Time Trade-Off

Evaluates the desirability of living the remainder of one’s life in the
current state of health vis-à-vis living less time in excellent health
Alternative 2
1.0
Healthy
Alternative 1
State i
Dead
hi
0
Time
Standard Gamble

Involves weighing trade-offs

Measures the preferences of individuals under risky situations
95%
Complete health
Alternative 2: uncertain outcome
5%
Death
100%
Limited health
Alternative 1: certain outcome
Context
3000 patients will be enrolled over one year and
followed for 4 to 5 years in an open label randomised
trial assessing two strategies for managing ARTs in
Uganda and Zimbawe
Strategies
1) Comparison of clinical monitoring with clinical
monitoring plus laboratory testing
2) Comparison of continuous ART with structured
treatment interruptions (12 weeks on and 12 weeks off ART)
Benefits from the trial
Since the effectiveness measure (progression to a
new WHO HIV stage 4 disease or death) of the
trial will not reflect how the patient feels and
functions in daily activities, nor will it give any
information on the patient’s views of whether and
how she or he has benefited from ART, QoL will be
assessed alongside the trial
Quality of life sub-study aim
To assess the effects of
antiretroviral therapy on the
patients’ health related quality of
life in Uganda.
Sub-study
Two sets of QoL instruments will be used to
evaluate ART:
1)MOS-HIV or WHOQoL-HIV
2) Culturally adjusted utility instruments, i.e.,
Visual Analogue Scale (VAS), Time Trade-Off
(TTO) and Standard Gamble (SG)
Sub-study
Specific measures will allow focusing
on changes relevant to HIV and its
treatment (antiretroviral drugs)
Health states evaluation will assess
the net effect of the treatment on the
patient health-related quality of life
Challenges of the sub-study

Terms such as expressing preference, giving up
time, gambling and uncertainty need to be
understood by the patients

Cultural and religious practices need to be
addressed and understood

Evaluation of reliability, construct and content
validity
Conclusion

QoL assessment is essential to understand the
whole impact of ART

Disease-target instrument should not be redundant
with the generic instrument and both should not be
so long as to be a burdensome for subjects to
complete.