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Quality of Life. Stephen McKenna Galen Research, Manchester, UK. Aim To introduce the concept of Quality of Life and distinguish it from HRQL. Types of patient-reported outcomes. Health-related quality of life (HRQL)/ (Health status). Impairment (well-being) Disability (functioning)

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quality of life

Quality of Life

Stephen McKenna

Galen Research, Manchester, UK

slide2
Aim

To introduce the concept of Quality of Life and distinguish it from HRQL

types of patient reported outcomes
Types of patient-reported outcomes

Health-related

quality of life

(HRQL)/

(Health status)

Impairment (well-being)

Disability (functioning)

Handicap (participation)

=

Quality of life

impairment
Impairment
  • Loss or abnormality of psychological, physiological or anatomical structure or function
  • Equates to symptoms
  • Disturbances at level of organ
  • Fatigue, pain, dizziness, depression, sleep problems
main value of assessing impairment
Main value of assessing impairment
  • Determining the impact of the disease from a clinical viewpoint
  • Determining appropriate intervention(s)
  • Note: impairment includes disease severity and adverse treatment effects, such as pain, acne or bruising
disability activity
Disability (activity)
  • Any restriction or lack of ability to perform an activity in the manner or within the range considered normal for a human being
  • Equates to functioning or functional status
  • Examples include restricted mobility, problems dressing & bathing, social restrictions, problems showing affection
  • HRQL measures (such as SF-36) commonly assess functioning in addition to impairment
value of assessing disability activity
Value of assessing disability (activity)
  • Planning rehabilitation services
  • Looking at impact of disease on society

However,

Focus on functioning gives potential for cultural bias

examples of impairments disabilities and handicaps
Impairments

Pain

Fatigue

Anxiety

Incontinence

Examples of impairments, disabilities and handicaps

Disabilities

Bathing

Dressing

Climbing Stairs

Ability to work

slide9

Socrates (469-399 BC)

Quoted by Plato

“We should set the highest value, not on living, but on living well”

slide10

I and D represent the consequences of disease in terms of deviation from norms

  • No account taken of preferences, other influences or emotional response
  • Provide a framework for assessing interventions from clinical rather than patient perspective
development of the needs based model
Development of the Needs-based Model

Hunt & McKenna, 1992

  • Study on QoL in depressed patients
  • Only valid method of developing the instrument was to derive the content from interviews with relevant patients
patient interviews revealed
Patient interviews revealed …
  • Impact of disease related to inability to meet needs rather than functional limitations
  • Individuals are driven or motivated by their needs
  • Fulfilment of these needs provides for satisfaction
  • Money, employment etc are important only insofar as they allow needs to be fulfilled
slide13

Employment

Employment-related needs

Objective

Function

Needs fulfilled

the needs based qol model
Life derives its quality from the ability and capacity of the individual to satisfy certain human needs

Quality of life is:

Highest when most needs are fulfilled

Lowest when few needs are satisfied

QoL is an unidimensional construct - providing an index rather than a profile

The Needs-based QoL model
slide15

Sir Thomas More (1478-1535)

“Human life quality is dependent upon the satisfaction of certain basic needs - lack of disease, mobility, adequate nutrition and shelter.”

health related quality of life
Health-Related Quality of Life
  • Assesses I and D as multi-dimensional construct
  • SF-36, NHP, SIP, EQ-5D, PGWB
  • Assumes:
    • health most important influence
    • health does not interact with other influences
  • Researchers now differentiate HRQL from QoL
gill feinstein 1994
Gill & Feinstein; 1994

Rather than being HRQL or health status..

“QoL is a reflection of the way in which patients perceive and react to their health status and to other non-medical aspects of their lives.”

hrql qol
HRQL ≠ QoL

“I try to lead as normal a life as possible,

and not think about my condition, or

regret the things it prevents me from doing,

which are not that many.”

Stephen Hawking

slide19

Influences on quality of life

Disease

Treatment

Impairments

(symptoms)

Disability

(functioning)

HRQL

Demographics

Personality

QoL

Culture /

economy

Social

Environment

spot the difference
Can we differentiate HRQL from QoL items?

The following 11 items assess HRQL or QoL.

Can you tell which construct is measured by each item?

Spot the difference
the solution
The Solution

1

I get breathless walking up a slight slope

HRQL

I feel guilty asking for help

2

QoL

3

Are you able to have an all over wash?

HRQL

4

I've lost interest in food

QoL

5

I can't put energy into my close relationships

QoL

the solution 2
The Solution (2)

6

I feel hopeless

HRQL

7

Are you able to walk around inside the house?

HRQL

8

I can't do things on the spur of the moment

QoL

9

I have to talk very quietly

QoL

10

I feel vulnerable when I'm on my own

QoL

11

I get dizzy spells most days

HRQL

needs based measures
Needs-based measures
  • Provide a patient-based endpoint
  • No pre-determined “components”
  • Separate from but complementary to HRQL endpoints
  • Based on a coherent model
  • QoL endpoint does not aid diagnosis nor guide treatment
slide24
Avoids asking about functions- fewer missing data

Copes better with adaptation

Facilitates cross-cultural development / adaptation

Facilitates development of disease-specific instruments

Provides an index of QoL

slide25

Response rates for

test-retest postal administration

UK versions

slide26

Reproducibility of needs-based

QoL instruments

UK versions

reproducibility of qol aghda
Country Alpha Test-retest

UK 0.93 0.93

US 0.88 0.88

Belgium (French) 0.95 0.88

Belgium (Flemish) 0.91 0.91

Denmark 0.93 0.89

Italy 0.89 0.85

Germany 0.90 0.89

Netherlands 0.88 0.94

Spain 0.88 0.91

Sweden 0.92 0.93

Reproducibility of QoL-AGHDA
slide28

Known groups validity for the QLDS

* Hamilton Depression Rating Scale

slide34

Treatment with recombinant human growth hormone where individual:

  • has severe GH deficiency,
  • is already receiving treatment, and
  • has impaired QoL as demonstrated by a score of at least 11 on the QoL-AGHDA

GH treatment should be discontinued if after 9 months the individual has an improvement of fewer than 7 points on the QoL-AGHDA

generating disease specific utility
Preference for health states

Reasonable to base these on QoL impact

Subset of QoL items as characteristics

Value states using standard methods:

Standard gamble, TTO, ranking or CA

Incorporate into relative or absolute utility and QALY-type analyses

Generating disease-specific utility
rghqol scenario
Herpes makes it quite difficult for me to plan ahead

It is very difficult to forget that I have herpes

Herpes is affecting my sex life a little

I get very depressed about having herpes

I worry quite a lot about people I know finding out I have herpes

I become a little tense when someone touches me

RGHQoL scenario
cross disease comparisons
Generic questionnaires only available option for making comparisons across diseases

However:

possess inferior psychometric properties

poor sensitivity to change in health status

work in different way in each disease group

Cross disease comparisons
cross disease utility
The same issues apply to generic utility measures such as the EQ-5D, SF-6 and HUI

Respondents interpret items differently so that responses have different values for different diseases

The implication is that such generic measures do not provide a valid comparison of utility gains across diseases

Cross disease utility
co calibration of disease specific qol instruments
RAQoL (rheumatoid arthritis) and QoL-AGDHA (adult growth hormone deficiency) selected, as:

based on same model of QoL

excellent psychometric properties

employ same response system

have QoL issues in common

Co-calibration of disease specific QoL instruments
slide41
Common item equating most economic method of item equating

Subtest of items contained in each scale

Ten linking items identified

free from DIF by diagnosis, age, gender, time

Logit range -1.14 to 1.47

item banking
Items fit same measurement model

Value for different diseases

Select relevant common items for co-calibration

Rheumatology item bank

Rheumatoid arthritis (RAQoL)

Ankylosing spondylitis (ASQoL)

Psoriatic arthritis (PSAQoL)

Lupus (SLEQoL)

Osteoarthritis (OAQoL)

Item banking
the future of qol assessment
The future of QoL assessment?
  • Highly acceptable and relevant scales
  • Excellent accuracy and responsiveness
  • Valid cross-disease comparisons by co-calibration of scales employing the needs model
  • Production of disease-specific utilities