Quality of Life Fundamentals QoL Measurement

2. Reasons of offering Treatment
• Our interventions increase longevity, prevent
future morbidity, or make patients feel better.
• The first two of these three endpoints are
relatively easy to measure.
• In the last 20 years, however, clinicians have
recognized the importance of direct
measurement of how people are feeling, and
how they are able to function in daily
activities. Investigators have developed
increasingly sophisticated methods of
making these measurements.

3. Health Related QoL
• Refers to a person or group's perceived
physical and mental health over time.
• To measure the effects of chronic
illness in their patients to better
understand how an illness interferes
with a person's day-to-day life.
• To measure the effects of numerous
disorders, short- and long-term
disabilities, and diseases in different
populations.

4. What is Health-Related Quality of Life?
• Health-related quality of life
represents the functional effects
of an illness and its consequent
therapy upon a patient, as
perceived by the patient
DOMAINS
• Physical
• Psychological
• Social

5. Knowledge defined as “coded information in
the brain”
- but 100 billion neurons, synapses in the brain
- and the working of the brain only partially known
- and we have evolutionary learning and hidden knowledge
(interaction brain and environment over time)
- hence always limited knowledge
- hence behaviour is always systematic and random

6. Knowledge and science create value and
reduce cost
• Uncured diseases ranked by cost to society:
– Heart disease
– Cancer
– Alzheimer´s
– Diabetes
– Arthritis
– Depression
– Stroke
– Osteoporosis
• The expected benefits from investment in
medical science are enormous and will remain
so

7. Quality of Life: Cancer Survival Rates
• Acute Lymphatic Leukaemia
– 1964-66: 4 %
– 1994-96 89%
• Breast Cancer
– 1964-66 65%
– 1994-96 84%
• Prostate Cancer
– 1964-66 45%
– 1994-96 72%
• Testicle Cancer
– 1964-66 49%
– 1994-96 95%
• Lung Cancer women men
– 1964-66 11% 8%
– 1994-96 10% 10%

8. Why is HRQoL Important?
• One of the aims of treating patients
must be to enable them to feel better
and to function better in their day-to-
day activities.
• The importance of incorporating health-
related quality of life into their routine
clinical practice and into clinical
studies.

9. Reasons of offering Treatment
We believe our interventions:
• increase longevity
• prevent future morbidity
• make patients feel better.
• The first two of these three endpoints are
relatively easy to measure.
• Investigators have developed increasingly
sophisticated methods of direct
measurement of how people are feeling, and
how they are able to function in daily
activities.

10. Measuring HRQL
• Investigators measure HRQL using
questionnaires that typically include
questions about how patients are
feeling or what they are experiencing
associated with response options such
as yes-no, or seven-point scales
• Investigators aggregate responses to
these questions into domains or
dimensions (such as physical or
emotional function) that yield an overall
score.

11. Clinical Scenario
• You are a physician following a 35 year-old man who has had
active Crohn's disease for 8 years.
• The symptoms were severe enough to require resectional
surgery four years ago, and despite treatment with
sulphasalazine and metronidazole, the patient has had active
disease requiring oral steroids for the last two years.
• Repeated attempts to decrease the prednisone have failed,
and the patient has required doses of greater than 15 mg. per
day to control symptoms.
• You are impressed by both the methodology and results of a
recent report documenting that such patients benefit from
oral methotrexate and suggest to the patient that he consider
this medication. When you explain some of the risks of
methotrexate, particularly potential liver toxicity, the patient is
hesitant. How much better, he asks, am I likely to feel while
taking this medication?

12. • Users' Map for an Article about HRQL
Are the recommendations valid?
» Primary Guides 1. Have the investigators measured aspects
of patients' lives that patients consider important? 2. Did the
HRQL instruments work in the way they are supposed to?
» Secondary Guides 3. Are there important aspects of HRQL
that have been omitted? 4. If there were tradeoffs between
quality and quantity of life, or an economic evaluation, have
they used the right measures?
What are the results?
What was the magnitude of effect on HRQL?
Will the results help me in caring for my patients?
• 1. Will the information from the study help me inform my
patients?
• 2. Did the study design simulate clinical practice?

13. Measuring HRQoL
• Health status, functional status, and
quality of life are three concepts often
used interchangeably to refer to the
same domain of "health”
• The health domain ranges from
negatively valued aspects of life,
including death, to the more positively
valued aspects such as role function or
happiness

14. Measuring HRQoL
• Health-related quality-of-life questionnaires
are either administered by trained
interviewers or self-administered.
• The former method is resource intensive but
ensures compliance, decreases errors, and
decreases missing items.
• The latter approach is much less expensive
but increases the number of missing
subjects and increases missing responses.
• A compromise between the two approaches
is to have instruments completed with
supervision.

15. What makes a Good HRQL Instrument
• The goals of HRQL measures
include differentiating between
people who have a better HRQL
and those who have a worse
HRQL (a discriminative
instrument) as well as measuring
how much the HRQL has
changed (an evaluative
instrument)

16. Types of HRQL Measures
Generic Instruments
• Health Profiles
• Two basic approaches characterize the
measurement of HRQL: generic
instruments (including single indicators,
health profiles, and utility measures) and
specific instruments
• Health profiles are instruments that
attempt to measure all important
aspects of HRQL.

17. Example of Health Profile
• The Sickness Impact Profile is an example
of a health profile and includes a physical
dimension (with categories of ambulation,
mobility, as well as body care and
movement); a psychosocial dimension
(with categories including social
interaction, alertness behavior,
communication, and emotional behavior);
and five independent categories including
eating, work, home management, sleep
and rest, as well as recreations and
pastimes.

18. Generic Instrument
• Utility Measures
• The other type of generic instrument, utility
measures of quality of life, are derived from
economic and decision theory; they reflect
the preferences of patients for treatment
process and outcome.
• They can be used in cost–utility analyses
that combine duration and quality of life. In
utility measures, HRQL is summarized as a
single number along a continuum that
usually extends from death (0.0) to full health
(1.0)
• Utility scores reflect both the health status and
the value of that health status to the patient.

19. Specific Instruments
• The second basic approach to quality-of-
life measurement focuses on aspects of
health status that are specific to the area
of primary interest.
• The instrument may be specific to the
disease (such as heart failure or asthma),
to a population of patients (such as the
frail elderly), to a certain function (such as
sleep or sexual function), or to a problem
(such as pain).

20. Choosing the Appropriate HRQL Measure
Health Status Surveys
• The choice of an HRQL measure
depends on the purpose of the
study
• Generic measures may be
particularly useful for surveys that
attempt to document the range of
disability in a general population or
a patient group

21. Instruments (contd)
• Clinical Trials
• Initially, when studying a new therapy
(such as a new drug), investigators rely on
disease-specific measures.
• Disease-specific measures are clinically
sensible in that patients and clinicians
intuitively find the items directly relevant;
their increased potential for
responsiveness is particularly compelling
in the clinical trial setting

22. Using instruments
• A number of specific measures can be
used together in a battery to obtain a
comprehensive picture of the impact of
different interventions on HRQL.
• A variety of instruments, including
measures of well-being, physical
function, emotional function, sleep,
sexual function, and side effects, were
used to show that antihypertensive
agents have a differential impact on
many aspects of HRQL

23. Evaluating QoL
STUDY DESIGNS
• Cross-Sectional (Non-Randomised
Longitudinal) Study: describes the
predictors of QoL (Specialty vs PHC)
• Randomized Study of a Clinical
Intervention: measure reflects the nature
of disease
• Cost effectiveness & Cost-benefit
Analysis (measuring QALYs)

24. Selecting an Assessment Instrument
Instruments used vary according to:
• The identity of the respondent (clinician,
patient, relative)
• The setting of the evaluation
• The type of questionnaire used (short
form, interview, survey)
• The General approach to the evaluation

25. Selecting an Assessment Instrument
• General Instruments are used in general
population to assess a wide range of
domains applicable to a variety of health
states, conditions & disease (Gen. Health
Surveys)
• Disease Specific Instruments focus on the
domains most relevant to the disease and
on the characteristics of the patients in
whom the condition is most prevalent
(Clinical trials/specific therapeutic
interventions)

26. Indicators of QoL
• Functional ability
• Health Status
• Symptoms and Somatic State
• Psychosocial Well-being
• Social support & life satisfaction
• Morale
• Independence
• Control over life
• Coping & adjustment abilities

27. Types of QoL Measures
• Generic
• Dimension-specific
• Disease – specific
• Item- specific

28. HRQ Instruments
• Sickness Impact Profile
• Nottingham Health Profile
• McMaster Health Index Questionnaire
• WHOQOL Assessment
• DALYs: Disability Adjusted Life Years
• The Quality of Well being Scale

29. Thanks You