Conceptual issues in QoL and HRQoL

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Conceptual issues in QoL and HRQoL

• Allan Colver
• Donald Court Professor
• Community Child Health

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(No Transcript)
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Bridges over River Tyne
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DURHAM CATHEDRAL
Durham Cathedral
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What is going on?

• Children with cerebral palsy
• Vargus Adams, 2005
• Lower QoL than general population. Related to
  severity of CP
• Varni, 2005,
• Lower HRQOL than general population. Related to
  severity of CP
• Rosenbaum, 2007
• QoL not related to severity of CP but HRQoL was
• Dickinson, 2007
• Same QoL as general population. On 6 out of 10
  domains, not related to severity of CP

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What is going on?

• Children with cerebral palsy
• Vargus Adams, 2005, CHQ
• Lower QoL than general population. Related to
  severity of CP
• Varni, 2005, PedsQL
• Lower HRQOL than general population. Related to
  severity of CP
• Rosenbaum, 2007, QoL children with disabilities,
  HUI
• QoL not related to severity but HRQoL was
• Dickinson, 2007, KIDSCREEN
• Same QoL as general population. On 6 out of 10
  domains, not related to severity of CP

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Overview

• Introduction
• QoL and HRQoL
• There are other concepts
• Condition specific instruments
• Choosing an instrument

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Quality of LifeLindstrom and Kohler 1991

• Global
• Macro environment
• Human rights
• Policies
• External sphere
• Work
• Economy
• Housing
• Interpersonal
• Family
• Intimate
• Extended
• Personal
• Physical
• Mental
• Spiritual
• Each domain has an objective and subjective
  component

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Overview of Child Well-being in Rich
CountriesUNICEF 2007

• Material well-being
• Health and Safety
• Educational well-being
• Family and peer relationships
• Behaviours and risks
• Subjective well-being

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Definition of Quality of Life WHO
Quality of Life is the individuals perception
of their position in life in the context of the
culture and value systems in which they live, and
in relation to their goals, expectations,
standards and concerns
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Children are human beings, not human becomings
Qvotrup
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United Nations

• UN Convention on Rights of the Child 1989
• Article 12. Children's views must be taken into
  account in all matters concerning them
• UN Convention on Rights of Persons with
  Disabilities 2006
• Article 7. Disabled children have the right to
  express their views

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The personal, self-reported subjective view

• New sociology
• United Nations Conventions
• WHO definition

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Frameworks/ Definitions

• Lindstrom. Total existence
• Ravens Sieberer. Multidimensional
• Raphael and Renwick. Being, belonging, becoming
• Eiser. Mismatch
• WHO

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Definition of Quality of Life WHO
Quality of Life is the individuals perception
of their position in life in the context of the
culture and value systems in which they live, and
in relation to their goals, expectations,
standards and concerns
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Quality of Life
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Health related QoL - HRQoL
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Health

• Heath is is defined by the World Health
  Organisation as
• "a state of complete physical, mental, and
  social wellbeing and not merely the absence of
  disease or infirmity.
• World Health Organisation. Official records of
  the World Health Organisation. 2, 100. 1948.
  Geneva, WHO

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What QoL/HRQoL is not

• Participation
• Objective consequences of impairment
• What health services can influence
• Utility

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Social model of disability
Individual Environment
Personality. Impairments of different
severities.
Participation Quality of life
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International Classification of Functioning,
Disability and Health - WHO 2002
Body structure and function Activity Participa
tion Contextual Factors Environmental Personal
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Some areas of childrens participation
Responsibilities money, shopping, helping
others, helping at home Maintaining relations
hips parents, siblings, friends,
teachers Community life clubs, church, charity
work Education getting to school, getting about
school, homework Recreation sport, films
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The term Participation has replaced Handicap

• Concept applies to all, not just disabled people
• Positive rather than negative connotations
• Difficulties do not reside in the individual -
  rather in the interaction between the individual
  and their environment

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What QoL/HRQoL is not

• Participation
• Objective consequences of impairment
• What health services can influence
• Utility

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Condition specific
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Condition specific

• Perception of
• The condition
• Treatment and equipment
• Participation
• Stigma
• Contacts with professionals

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Definition

• An individuals perception of aspects of their
  lives that they think are affected by a
  particular medical condition and its treatment

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Characteristics of an instrument(Elizabeth
Waters Melbourne)

• Original purpose of instrument
• Actual focus of instrument
• Origin of items
• Opportunity for self-report
• Clarity of items, using childrens own phrases
• Care taken if negative wording
• Number of items and time to complete
• Psychometric properties

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QoL

• How do three instruments rate against the
  previous criteria?
• KIDSCREEN Ravens-Sieberer
• CHQ - Landgraf
• PedsQL - Varni

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Health or functioning
Quality of life and wellbeing
Original purpose of instrument
KIDSCREEN PedsQL
CHQ
Quality of life and wellbeing
Health or functioning
Actual focus of the instrument
CHQ
PedsQL
KIDSCREEN
High involvement of families
Low involvement of families
Origin of items
PedsQL
KIDSCREEN
CHQ
No opportunity for self-report
Self-report version available
Opportunity for self-report
KIDSCREEN PedsQL (5)
CHQ (13)
Negative wording
Positive wording
Potential threat to self-esteem
KIDSCREEN
CHQ
PedsQL
Large number of items
Small number of items
Length
KIDSCREEN (10,27,52) PedsQL CHQ parent
CHQ (self-report 87 items)
Poor or not demonstrated
Excellent and demonstrated adequately
Psychometric properties
CHQ
KIDSCREEN PedsQL
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Cerebral palsy specific perceptions

• How do three instruments rate against the
  previous criteria?
• PedsQL CP Module Varni
• DISABKIDS CP Module - Bullinger
• CPQoL-Child Davis and Waters
• CPChild - Narayanan

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Health or functioning
Quality of life and wellbeing
Original purpose of instrument
CP QoL-Child PedsQL-CP DISABKIDS-CP
CP-CHILD
Health or functioning
Quality of life and wellbeing
Actual focus of instrument
DISABKIDS-CP CP-CHILD
CP QoL-Child
PedsQL-CP
Low involvement of families
High involvement of families
Origin of items
DISABKIDS-CP
CP QoL-Child
PedsQL-CP CP-CHILD
No opportunity for self-report
Self-report version available
Opportunity for self-report
CP QoL-Child PedsQL-CP DISABKIDS-CP
CP-CHILD
Negative wording
Positive wording
Potential threat to self-esteem
CP-CHILD
CP QoL-Child
PedsQL-CP DISABKIDS-CP
Large number of items
Small number of items
Length
DISABKIDS-CP
CP-CHILD CP QoL-Child
PedsQL-CP
Poor or not demonstrated
Excellent and demonstrated adequately
Psychometric properties
CP-CHILD CP QoL-Child DISABKIDS-CP PedsQL-CP
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Conclusion

• QoL HRQoL
• Other concepts which used to be called HRQoL
• Participation
• Function
• Utility
• Condition specific measures of perception of
  condition and treatment

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DURHAM CATHEDRAL
Durham Cathedral