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 well-being 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
SpecificThis type of instrument evaluates a series of health dimensions specific to a disease.
GenericThese 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-HIVPhysical Psychological Social
relationships Environment
Pain and discomfort Energy and fatigue
Positive feelings Thinking, learning, memory and concentration
Personal relationships Practical support
Physical safety and security Home environment
Sleep and rest Mobility
Self-esteem Body image and appearance
Sex Financial resources Health and social care: availability and quality
Activities of daily living
Negative feelings Opportunities for acquiring new information and skills
Dependence on medication or treatment
Spirituality, religion and personal beliefs
Participation and opportunities for recreation and leisure
Working capacity
Physical environments Transport
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)
Visual Analogue Scale (VAS)100100
6060
5050
4040
3030
2020
1010
00
7070
8080
9090
Please draw a line at the point on the scale that summarises your current health status
Your own health state today
It is easy to use and achieve high response rates
It is a choice-less assessment
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
Healthy
State i
Alternative 2
Alternative 1
1.0
hi
0 Time
VA
LU
E
Dead
Standard Gamble
95%
Alternative 1: certain outcome
Alternative 2: uncertain outcome
100%
5%
Complete health
Death
Limited health
Involves weighing trade-offs
Measures the preferences of individuals under risky situations
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
Strategies1) 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.