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.