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Quality of Life. . .
as a Health Outcome
as a Health Predictor
Dr. Craig Jackson
Senior Lecturer in Health Psychology
Faculty of Health & Community Care
University of Central England
[email protected]
Not The Meaning of Life. But Quality
Quality of Life
“There is surely a place for research into psychological interventions that
improve quality of life for patients after diagnosis or treatment.
Maybe happiness (or reduced unhappiness) has some effect on survival.”
Letter to BMJ, Nov 2002
Descartes – division of body and mind
Biopsychosocial model reunified body & mind
Studies should incorporate the patient's perspective of outcome
Essential to provide evidence of impact on patient in terms of
(i) Health status
(ii) Health-related quality of life
Traditional model of Disease Development
Pathogen
Modifiers
Lifestyle
Individual susceptibility
Disease (pathology)
Biopsychosocial model of Illness
Pathogen
Psychosocial Factors
Attitudes
Behaviour
Quality of Life
Illness (well-being)
The Insurance Man
Franz Kafka
1907 – 24yr old Franz worked for Assicutazion Generali
Claimants bring grievances to him
Franz decides if they have a case
1911 - Referred many ill workers to his brother-in-law’s asbestos factory
1930 – Effects of asbestos became publicly available
Workers in the factory were happy and relieved
“Thank god – you saved my life”
“You weren’t to know. You breathed. That’s all you did wrong”
Why use QoL as an Outcome?
Cannot achieve cure?
Increase in QoL next best thing
Central concept in health work
WHO 1984 “Physical, mental and social well-being”
4 core components:
Disease state and Physical symptoms
Functional status
Psychological functioning
Social functioning
Subjectivity? There’s the catch
QoL is NOT . . . . .
Being Happy
Being disease free
Feeling warm and fuzzy
Having money
MULTIDIMENSIONAL
CONCEPT
Driving that car
Having a good job
IT’S ALL OF THE ABOVE
AND MORE . . .
QoL may be. . .
Ability
Adaptation
Appreciation
Basic Needs
Belonging
Control
Demands
Distress
Enhancement
Enjoyment
Environment
Expectations
Experiences
Flexibility
Freedom
Fulfilment
Gaps
Gender
Happiness
Health
Hopes
Identity
Improvement
Inclusivity
Integrity
Isolation
Judgements
Knowledge
Lacks
Living Conditions
Mismatches
Needs
Opportunities
Perceptions
Politics
Possibilities
Religion
Safe
Satisfaction
Security
Self-esteem
Society
Spirituality
Status
Stress
Truth
Well-being
Wishes
Working Conditions
Diversity
Pleasure
QoL as a Widespread Outcome
Reduced Quality of Life observed as outcome in many conditions:
Child sexual abuse
Dickinson et al. 1999
Chronic hep. c
Koff, 1999
Rheumatoid arthritis
Strombeck et al. 2000
Fibromyalgia
Strombeck et al. 2000
Multiple sclerosis
Shawaryn et al. 2002
Obesity
Sturm et al. 2001
Asthma
Hyland et al. 1995
The 3 B’s
Being
Belonging
Becoming
Quality of Life – Systems Models
Quality of Life measures
Disease / Population Specific
Particular health problems over several health domains,
e.g. Asthma Quality of Life Questionnaire
Dimension Specific
Particular aspects e.g. psychological, usually produces a single score
Generic Measures
Across different patient populations, measures many health domains e.g. SF-36
Individualised
Patients include and weight importance of aspects of their own life, producing a single
score e.g. Patient Generated Index
Utility Specific
economic evaluation, preferences for health states, produces a single index e.g. EuroQol
Popularity of QoL measures
800 articles in BMJ since 1992
3921 papers concern QoL (17%)
1275 different scales of QoL
144 in 1990
650 in 1999
increase of 450%
Disease / Population specific scales
Generic measures scales
Dimension specific scales
Utility specific scales
Individualised scales
1819
865
690
409
62
46%
22%
18%
15%
1%
Garratt et al. 2002
Health Related Quality of Life (HRQoL)
Very Broad Concept
The effects of ill-health
on
Psychological, Social, Physical well-being
Multidimensional
No overall agreement on:
what is included in QoL ?
how to measure QoL ?
gold standard ?
Despite this. . . . . QoL scales still being made
Jenney & Campbell 1997
Why use QoL as an Outcome?
Pain
Fatigue
Disability
Broader impacts of ILLNESS & TREATMENT
Physical
Emotional
Social
“Well-being”
Subjectivity of Quality
Broader impacts need to be assessed and reported by the patient
Patient Assessed Measures
Generic QoL Assessment
Self Evaluation of Quality of Life (Danish EQoL)
308 questions!
Good collection of demographic / prognostics data essential:
Age
Sex
Residence
Goods
Social network
Symptoms
Life-Perception
Height
Housing
Circumstances
Friends
Health
Satisfaction
Weight
Education
Lifestyle
Eating
Sexuality
Need-Fulfilment
Marital status
Occupation
Exercise
Alcohol
Self- Perception
Ethnicity
Domestic
Income
Smoking
Drugs
Disease Specific QoL
Stroke-Specific Quality of Life Scale ( SS-QOL)
49 items
Strongly
agree
Moderately
agree
Neither
agree
Moderately
disagree
Strongly
disagree
“I felt tired most of the time”
“I had to stop and rest often during the day”
“I felt I was a burden to my family”
“My physical condition interfered with my daily life”
“I felt hopeless about my future”
“I was not interested in food”
Williams et al. 1999
Disease Specific QoL
Stroke-Specific Quality of Life Scale ( SS-QOL)
49 items
12 domains covered
Mobility
Energy
Upper Extremity Function
Vision
Physiology
Medical
Personality
Mood
Language
Thinking
Psychology
Cognitive
Self-care
Social roles
Family Roles
Work / Productivity
Activity
Social
Methodological Problems of QoL
Numerous measures of QoL in some specialties
Little standardisation
Two prerequisites for standardisation
1. Primary research through concurrent evaluation of measures
2. Secondary research through structured reviews of measures
Recommendations from such QoL scales may not be simple to use clinically
Methodological Problems of QoL
QoL scales NOT independent of the patient
Shopping Bag of experiences? “Shopping Trolley”
Psychological status: Overlap between Affective and Somatic states
Data dredging
Too Specific
designated: populations / diseases, timeframes, situations
“Spirituality” ignored
Generic QoL scales may suffer
Developers of scales have vested interests
Most popular QoL scales = Pushiest developer
Can poor QoL influence symptom development and Ill-health?
In short - YES
Problem of aetiology?
Does ill-health lead to reduced QoL
Or
Does reduced QoL lead to ill-health
An example can be found with many investigations of non-specific symptoms
Such as Dippers’ Flu . . . .
Psychological / Perceptual Process of Illness
Internal Process
“Do I notice internal changes?”
“Should I interpret them negatively?”
“Should I think they are important?”
External processes
MENTAL SCHEMA
Internal representation of the world
(knowledge, attitudes, beliefs)
What do we believe about health?
“Do I notice external sources?”
“What should I believe about it?”
“What should I do about it?”
What do we believe affects health?
Factors Influencing Symptom Development
Selective Internal Attention
Tedious & un-stimulating environment
Little communication
Stressful environment
Learned behaviours
“Negative Affectivity”
OVER FOCUS ON SYMPTOMS
Comparisons
Attributions
Responses
Blame
Pessimism
Factors Influencing Symptom Development
Selective External Attention


Heightened concern about risk
involuntary
uncontrolled
lack of information
dreaded consequences
Mistrust of government / industry
 Attitudes about medicine

Political agenda

Legal agenda

Social and political climate

Media and pressure group activity
OVER FOCUS ON SYMPTOMS
Comparisons
Attributions
Responses
Blame
Pessimism
Irritable Bowel Syndrome
Common digestive disorder
Functional syndrome
Traumatic life events, Personality
disorders, Stress, Anxiety, Depression
Somatization
Not a psychological disorder
Night-workers & Loners
Psychology important in how symptoms are perceived and reacted to
Can poor QoL Become a predictor of who will suffer in advance?
The UK Sheep Dipping Saga
The UK Sheep Dipping Saga
UK Sheep dipped twice yearly, and was compulsory 1984 – 1988
Organophosphate Pesticides (Ops) were the dip of choice & recommended
by HSE & Government
Routine sheep dipping is wet and messy work
NOT usually an acute exposure
Chronic and low level exposures more likely
Non-specific symptoms alleviate 48 hours post-dip
Dippers’ Flu
Anxiety
Depression
Fatigue
Aches & Pains
Headache
Fever
Neurobehavioural problems (memory, concentration)
The UK Sheep Dipping Saga
The UK Sheep Dipping Saga
The UK Sheep Dipping Saga
Headaches
Anxiety
Fatigue
Depression
Dippers’ Flu
Memory loss
Concentration
General malaise
“Unexplained Symptom Syndrome”
No Chronic Effects Ever Found
• Symptoms should be acute & reversible, NOT chronic
• Bio monitoring suggests symptoms should NOT occur
• No good evidence of chronic effects (except after severe intoxication)
• No reliable pattern to the symptoms reported
• No pathological changes observed
Some Short Term Effects
Exposed Farmers
Control Subjects
General cramp
Headache
Shiver
Weak muscles
Sleep walking
Cognitive problems
Judging distance
Numb toes
Nose bleeds
Earache
Fever
Sneezing
Cough
Runny eyes
Stiff muscles
General ache
Pins and needles
Buzzing ears
Itchy skin
Flaky skin
Trouble sleeping
Flushes
Aggression
General weakness
Coughing blood
Jackson et al. 2001
The Fall Out Begins
Farmers’ Response
Government Response
Seek media exposure
Initially deny any effects
Pressure groups formed
Commission research
Support groups formed
Organize committees / reviews
Search for “medicalisation”
Question research results
Search for compensation
Minor policy decisions
Commission more research
Why Did Farmers Become Ill ?
Exposed to hazardous chemicals
Opportunity to blame government
Mistrust of government
Lack of definitive information
Attention from media
Support of pressure groups *
Isolation of farming life *
Economic stress *
Anti-chemical / pro-organic society *
Farmers seen as intensive polluters *
Unpopular with public *
More Complicated Than Just OP Exposure
Jackson et al. 2001
Quality of Life in Farming
Satisfaction with Agricultural Life (SAL)
29 Items
Found 4 factors concerning QoL in farmers
1. The Future of farming
2. Outside agencies
3. Financial cutbacks
4. Traditional lifestyle (solitude, limitations, freedom)
More Satisfied Farmers = Reported Fewer Symptoms
Jackson et al. 2003
Mental Health Problems of Sheep Farmers
Satisfaction with Agricultural Life (SAL)
Perceived Fatigue
Reflective Personality
Stressful Life Events
Anxiety
Depression
Agricultural Dissatisfaction
Handling Sheep <48hrs post-dip
Jackson et al. 2003
Increased Symptomology
Biopsychosocial model of Illness
Pathogen
OP sheep dip exposure
Psychosocial Factors
Stress
Personality
Fatigue
Quality of Life
Illness
Non-specific symptoms
Dippers’ flu
The UK Sheep Dipping Saga
Future Approaches to Studying Non-Specific Symptoms
• Biopsychosocial approach could better explain other non-specific symptoms
• Medical Disease model is limited
1. Possibility of no objective measurable diagnostic criteria
2. Contribution of many determinants of illness
3. Qualitative & Quantitative methods
4. Better acceptance among the physician community
5. Quality of Life developed as ill-health predictor
Prevalence of Non-Specific Symptoms
Symptom
Prevalence %
Stuffy nose
46.2
Headaches
Tiredness
Cough
Itchy eyes
Sore throat
Skin rash
Wheezing
Respiratory
Nausea
Diarrhoea
Vomiting
33.0
29.8
25.9
24.7
22.4
12.0
10.1
10.0
9.0
5.7
4.0
Heyworth & McCaul, 2001
Modern day complaints
Multiple Chemical Sensitivity
Chronic Fatigue Syndrome
Sick Building Syndrome
Gulf War Syndrome
Low-level Chemical Exposure
Electrical Sensitivity
Historical complaints
Railway Spine
Neurasthenia
Combat Syndrome
Future Approaches to Unexplained Symptom Syndromes

Accept there may be no objectively measurable diagnostic criteria

Accept contribution of many determinants of ill health

Both quantitative and qualitative research methods needed

Adjust our own mental models of accepting illness

Quality of Life important as an “outcome” & “contributor” to illness
UNDERSTANDING ISSUES CONCERNING QUALITY OF LIFE
MAY RESULT IN EXPLANATIONS FOR SUCH
SOMATIC SYMPTOM SYNDROMES