craig'jacksonuce'ac'uk

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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
craig.jackson_at_uce.ac.uk
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Not The Meaning of Life. But Quality
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• 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
• Health status
• Health-related quality of life

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Traditional model of Disease Development
Pathogen
Disease (pathology)
Modifiers Lifestyle Individual susceptibility
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Biopsychosocial model of Illness
Pathogen
Illness (well-being)
Psychosocial Factors Attitudes Behaviour Quality
of Life
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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-laws asbestos factory 1930
Effects of asbestos became publicly
available Workers in the factory were happy and
relieved Thank god you saved my life You
werent to know. You breathed. Thats all you did
wrong
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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
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Subjectivity? Theres the catch
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QoL is NOT . . . . . Being Happy Being disease
free Feeling warm and fuzzy MULTIDIMENSIONAL Ha
ving money CONCEPT Driving that
car Having a good job ITS ALL OF THE
ABOVE AND MORE . . .
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QoL may be. . .
Ability Adaptation Appreciation Basic Needs
Belonging Control Demands Distress
Diversity 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 Pleasure Politics P
ossibilities Religion Safe Satisfaction
Security Self-esteem Society Spirituality
Status Stress Truth Well-being Wishes
Working Conditions
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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
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The 3 Bs Being Belonging Becoming
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Quality of Life Systems Models
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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
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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 1819
46 Generic measures scales 865
22 Dimension specific scales 690
18 Utility specific scales 409
15 Individualised scales 62 1
Garratt et al. 2002
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Health Related Quality of Life (HRQoL) Very
Broad Concept The effects of ill-health on Psycho
logical, Social, Physical well-being Multidimens
ional 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
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Generic QoL Assessment Self Evaluation of
Quality of Life (Danish EQoL) 308
questions! Good collection of demographic /
prognostics data essential Age Sex Height Weigh
t Marital status Domestic Residence Housing Educa
tion Occupation Income Goods Circumstances Lifest
yle Exercise Smoking Social network Friends Eatin
g Alcohol Drugs Symptoms Health Sexuality Self-
Perception Life-Perception Satisfaction Need-Ful
filment Ethnicity
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• Methodological Problems of QoL
• Numerous measures of QoL in some specialties
• Little standardisation
• Two prerequisites for standardisation
• Primary research through concurrent evaluation of
  measures
• Secondary research through structured reviews of
  measures
• Recommendations from such QoL scales may not be
  simple to use clinically

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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
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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 . . .
.
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• 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
• Do I notice external sources?
• What should I believe about it?
• What should I do about it?

MENTAL SCHEMA Internal representation of the
world (knowledge, attitudes, beliefs) What do
we believe about health? What do we believe
affects health?
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OVER FOCUS ON SYMPTOMS Comparisons Attributions Re
sponses Blame Pessimism
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• 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 Re
sponses Blame Pessimism
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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?
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The UK Sheep Dipping Saga
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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 Fati
gue Aches Pains Headache Fever Neurobehavio
ural problems (memory, concentration)
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The UK Sheep Dipping Saga
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The UK Sheep Dipping Saga
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The UK Sheep Dipping Saga
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• 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

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Some Short Term Effects Exposed
Farmers Control Subjects General
cramp Sneezing Headache Cough Shiver Run
ny eyes Weak muscles Stiff muscles Sleep
walking General ache Cognitive problems Pins
and needles Judging distance Buzzing ears Numb
toes Itchy skin Nose bleeds Flaky
skin Earache Trouble sleeping Fever Flushe
s Aggression General weakness Cough
ing blood
Jackson et al. 2001
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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
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• 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

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More Complicated Than Just OP Exposure
Jackson et al. 2001
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• 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
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Mental Health Problems of Sheep
Farmers Satisfaction with Agricultural Life (SAL)
Perceived Fatigue
Reflective Personality
Anxiety Depression
Stressful Life Events
Agricultural Dissatisfaction
Handling Sheep lt48hrs post-dip
Increased Symptomology
Jackson et al. 2003
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Biopsychosocial model of Illness
Pathogen OP sheep dip exposure
Illness Non-specific symptoms Dippers flu
Psychosocial Factors Stress Personality Fatigue Qu
ality of Life
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The UK Sheep Dipping Saga
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• 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

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Prevalence of Non-Specific Symptoms
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• 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