craig.jackson@uce.ac.ukcraig.jackson@uce.ac.uk

Quality of Life. . .Quality of Life. . .

as a Health Outcomeas a Health Outcome

as a Health Predictoras a Health Predictor

Dr. Craig JacksonSenior Lecturer in Health Psychology

Faculty of Health & Community Care University of Central England

Not The Meaning of Life. But QualityNot The Meaning of Life. But Quality

Quality of LifeQuality of Life

““There is surely a place for research into psychological interventions that There is surely a place for research into psychological interventions that improve quality of life for patients after diagnosis or treatment. improve quality of life for patients after diagnosis or treatment. Maybe happiness (or reduced unhappiness) has some effect on survival.” Maybe happiness (or reduced unhappiness) has some effect on survival.”

Letter to BMJ, Nov 2002Letter to BMJ, Nov 2002

Descartes – division of body and mindDescartes – division of body and mind

Biopsychosocial model reunified body & mindBiopsychosocial model reunified body & mind

Studies should incorporate the patient's perspective of outcomeStudies should incorporate the patient's perspective of outcome

EssentialEssential to provide evidence of impact on patient in terms of to provide evidence of impact on patient in terms of

(i)(i) HealthHealth statusstatus(ii)(ii) Health-related quality of lifeHealth-related quality of life

PathogenPathogen DiseaseDisease (pathology)(pathology)

ModifiersModifiersLifestyleLifestyleIndividual susceptibilityIndividual susceptibility

Traditional model of Disease DevelopmentTraditional model of Disease Development

PathogenPathogen

Psychosocial FactorsPsychosocial FactorsAttitudesAttitudesBehaviourBehaviourQuality of LifeQuality of Life

Illness Illness (well-being)(well-being)

Biopsychosocial model of IllnessBiopsychosocial model of Illness

The Insurance ManThe Insurance Man

Franz KafkaFranz Kafka1907 – 24yr old Franz worked for Assicutazion Generali1907 – 24yr old Franz worked for Assicutazion Generali

Claimants bring grievances to himClaimants bring grievances to himFranz decides if they have a caseFranz decides if they have a case

1911 - Referred many ill workers to his brother-in-law’s asbestos factory1911 - Referred many ill workers to his brother-in-law’s asbestos factory

1930 – Effects of asbestos became publicly available1930 – Effects of asbestos became publicly available

Workers in the factory were happy and relievedWorkers in the factory were happy and relieved““Thank god – you saved my life”Thank god – you saved my life”

““You weren’t to know. You breathed. That’s all you did wrong”You weren’t to know. You breathed. That’s all you did wrong”

Why use QoL as an Outcome?Why use QoL as an Outcome?

Cannot achieve cure?Cannot achieve cure?

Increase in QoL next best thingIncrease in QoL next best thing

Central concept in health workCentral concept in health work

WHO 1984 WHO 1984 “Physical, mental and social well-being”“Physical, mental and social well-being”

4 core components:4 core components:Disease state and Physical symptomsDisease state and Physical symptomsFunctional statusFunctional statusPsychological functioningPsychological functioningSocial functioningSocial functioning

Subjectivity? There’s the catchSubjectivity? There’s the catch

QoL is NOT . . . . .QoL is NOT . . . . .

Being HappyBeing Happy

Being disease freeBeing disease free

Feeling warm and fuzzyFeeling warm and fuzzy MULTIDIMENSIONALMULTIDIMENSIONAL

Having moneyHaving money CONCEPTCONCEPT

Driving that carDriving that car

Having a good jobHaving a good job

IT’S ALL OF THE IT’S ALL OF THE ABOVEABOVE

AND MORE . . . AND MORE . . .

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 Possibilities Religion Safe

Satisfaction Security Self-esteem Society

Spirituality

Status Stress Truth Well-being Wishes

Working Conditions

QoL may be. . . QoL may be. . .

QoL as a Widespread OutcomeQoL as a Widespread Outcome

Reduced Quality of Life observed as outcome in many conditions:Reduced Quality of Life observed as outcome in many conditions:

Child sexual abuseChild sexual abuse Dickinson Dickinson et al.et al. 1999 1999

Chronic hep. c Chronic hep. c Koff, 1999 Koff, 1999

Rheumatoid arthritisRheumatoid arthritis Strombeck Strombeck et al.et al. 2000 2000

FibromyalgiaFibromyalgia Strombeck Strombeck et al.et al. 2000 2000

Multiple sclerosisMultiple sclerosis Shawaryn Shawaryn et al.et al. 2002 2002

ObesityObesity Sturm Sturm et al.et al. 2001 2001

AsthmaAsthma Hyland Hyland et al.et al. 1995 1995

The 3 B’sThe 3 B’s

BeingBeing

BelongingBelonging

BecomingBecoming

Quality of Life – Systems ModelsQuality of Life – Systems Models

Quality of Life measuresQuality of Life measures

Disease / Population SpecificDisease / Population SpecificParticular health problems over several health domains, Particular health problems over several health domains, e.g. Asthma Quality of Life Questionnairee.g. Asthma Quality of Life Questionnaire

Dimension Specific Dimension Specific Particular aspects e.g. psychological, usually produces a single scoreParticular aspects e.g. psychological, usually produces a single score

Generic MeasuresGeneric Measures Across different patient populations, measures many health domains e.g. SF-36Across different patient populations, measures many health domains e.g. SF-36

IndividualisedIndividualisedPatients include and weight importance of aspects of their own life, producing a single Patients include and weight importance of aspects of their own life, producing a single score e.g. Patient Generated Indexscore e.g. Patient Generated Index

Utility SpecificUtility Specificeconomic evaluation, preferences for health states, produces a single index e.g. economic evaluation, preferences for health states, produces a single index e.g. EuroQolEuroQol

Popularity of QoL measuresPopularity of QoL measures

800 articles in BMJ since 1992800 articles in BMJ since 1992

3921 papers concern QoL (17%)3921 papers concern QoL (17%)

1275 different scales of QoL1275 different scales of QoL

144 in 1990 144 in 1990 650 in 1999 650 in 1999 increase of 450% increase of 450%

Disease / Population specific scalesDisease / Population specific scales 1819 1819 46%46%Generic measures scales Generic measures scales 865 865 22%22%Dimension specific scales Dimension specific scales 690 690 18%18%Utility specific scalesUtility specific scales 409 409 15%15%Individualised scalesIndividualised scales 62 62 1% 1%

Garratt Garratt et al.et al. 2002 2002

Health Related Quality of Life (HRQoL)Health Related Quality of Life (HRQoL)

Very Broad ConceptVery Broad Concept

The effects of ill-healthThe effects of ill-healthonon

Psychological, Social, Physical well-beingPsychological, Social, Physical well-being

MultidimensionalMultidimensional

No overall agreement on: No overall agreement on: what is included in QoL ?what is included in QoL ?how to measure QoL ?how to measure QoL ?gold standard ?gold standard ?

Despite this. . . . . QoL scales still being madeDespite this. . . . . QoL scales still being made

Jenney & Campbell 1997Jenney & Campbell 1997

Why use QoL as an Outcome?Why use QoL as an Outcome?

PainPainFatigueFatigue Broader impacts of ILLNESS & TREATMENTBroader impacts of ILLNESS & TREATMENTDisabilityDisability

PhysicalPhysical Emotional Emotional Social Social

“ “Well-being”Well-being”

SubjectivitySubjectivity of Qualityof Quality

Broader impacts need to be Broader impacts need to be assessedassessed and and reportedreported by the by the patientpatient

Patient Assessed MeasuresPatient Assessed Measures

Generic QoL AssessmentGeneric QoL Assessment

Self Evaluation of Quality of Life (Danish EQoL)Self Evaluation of Quality of Life (Danish EQoL)

308 questions!308 questions!

Good collection of demographic / prognostics data essential:Good collection of demographic / prognostics data essential:

AgeAge SexSex HeightHeight WeightWeight Marital statusMarital status DomesticDomesticResidenceResidence HousingHousing EducationEducation OccupationOccupation IncomeIncomeGoodsGoods CircumstancesCircumstances LifestyleLifestyle ExerciseExercise SmokingSmokingSocial networkSocial network FriendsFriends EatingEating AlcoholAlcohol DrugsDrugsSymptomsSymptoms HealthHealth SexualitySexuality Self- PerceptionSelf- PerceptionLife-PerceptionLife-Perception SatisfactionSatisfaction Need-FulfilmentNeed-Fulfilment EthnicityEthnicity

Disease Specific QoLDisease Specific QoL

Stroke-Specific Quality of Life Scale ( SS-QOL)Stroke-Specific Quality of Life Scale ( SS-QOL)

49 items49 items

StronglyStrongly ModeratelyModerately NeitherNeither ModeratelyModerately StronglyStronglyagreeagree agreeagree agreeagree disagreedisagree disagreedisagree

““I felt tired most of the time”I felt tired most of the time”

““I had to stop and rest often during the day”I had to stop and rest often during the day”

““I felt I was a burden to my family”I felt I was a burden to my family”

““My physical condition interfered with my daily life”My physical condition interfered with my daily life”

““I felt hopeless about my future”I felt hopeless about my future”

““I was not interested in food”I was not interested in food” Williams Williams et al. et al. 19991999

Disease Specific QoLDisease Specific QoL

Stroke-Specific Quality of Life Scale ( SS-QOL)Stroke-Specific Quality of Life Scale ( SS-QOL)

49 items49 items

12 domains covered12 domains covered MobilityMobilityEnergyEnergy PhysiologyPhysiologyUpper Extremity FunctionUpper Extremity Function MedicalMedicalVisionVision

PersonalityPersonalityMoodMood PsychologyPsychologyLanguageLanguage CognitiveCognitiveThinkingThinking

Self-careSelf-careSocial rolesSocial roles ActivityActivityFamily RolesFamily Roles SocialSocialWork / ProductivityWork / Productivity

Methodological Problems of QoLMethodological Problems of QoL

Numerous measuresNumerous measures of QoL in some specialtiesof QoL in some specialties

Little standardisationLittle standardisation

Two prerequisites for standardisationTwo prerequisites for standardisation

1.1. Primary researchPrimary research through concurrent evaluation of measures through concurrent evaluation of measures

2.2. Secondary researchSecondary research through structured reviews of measures through structured reviews of measures

Recommendations from such QoL scales may not be simple to use clinicallyRecommendations from such QoL scales may not be simple to use clinically

Methodological Problems of QoLMethodological Problems of QoL

QoL scales NOT independent of the patientQoL scales NOT independent of the patient

Shopping Bag of experiences? “Shopping Trolley”Shopping Bag of experiences? “Shopping Trolley”

Psychological status: Overlap between Affective and Somatic statesPsychological status: Overlap between Affective and Somatic states

Data dredgingData dredging

Too Specific Too Specific designated: populations / diseases, timeframes, situationsdesignated: populations / diseases, timeframes, situations

““Spirituality” ignoredSpirituality” ignored

Generic QoL scales may sufferGeneric QoL scales may suffer

Developers of scales have vested interestsDevelopers of scales have vested interestsMost popular QoL scales = Pushiest developerMost popular QoL scales = Pushiest developer

Can poor QoL influence symptom development and Ill-health?Can poor QoL influence symptom development and Ill-health?

In short - YESIn short - YES

Problem of aetiology?Problem of aetiology?

Does ill-health lead to reduced QoLDoes ill-health lead to reduced QoLOrOrDoes reduced QoL lead to ill-healthDoes reduced QoL lead to ill-health

An example can be found with many investigations of non-specific symptomsAn example can be found with many investigations of non-specific symptoms

Such as Dippers’ Flu . . . . Such as Dippers’ Flu . . . .

Psychological / Perceptual Process of IllnessPsychological / Perceptual Process of Illness

Internal ProcessInternal Process

““Do I notice internal changes?”Do I notice internal changes?”

““Should I interpret them negatively?”Should I interpret them negatively?”

““Should I think they are important?”Should I think they are important?”

External processesExternal processes

““Do I notice external sources?”Do I notice external sources?”

““What should I believe about it?”What should I believe about it?”

““What should I do about it?”What should I do about it?”

MENTAL SCHEMAMENTAL SCHEMA

Internal representation of the world Internal representation of the world

(knowledge, attitudes, beliefs)(knowledge, attitudes, beliefs)

What do we believe about health?What do we believe about health?

What do we believe affects health?What do we believe affects health?

OVER FOCUS ON SYMPTOMSOVER FOCUS ON SYMPTOMS

ComparisonsComparisons

AttributionsAttributions

ResponsesResponses

BlameBlame

PessimismPessimism

Factors Influencing Symptom DevelopmentFactors Influencing Symptom Development

Selective Internal AttentionSelective Internal Attention

Tedious & un-stimulating environmentTedious & un-stimulating environment

Little communication Little communication Stressful environment Stressful environment

Learned behavioursLearned behaviours “Negative Affectivity” “Negative Affectivity”

Factors Influencing Symptom DevelopmentFactors Influencing Symptom Development

Selective External AttentionSelective External Attention

Heightened concern about risk Heightened concern about risk involuntaryinvoluntary uncontrolleduncontrolled lack of informationlack of information dreaded consequencesdreaded consequences

Mistrust of government / industryMistrust of government / industry Attitudes about medicineAttitudes about medicine Political agendaPolitical agenda Legal agendaLegal agenda Social and political climateSocial and political climate

Media and pressure group activityMedia and pressure group activity

OVER FOCUS ON SYMPTOMSOVER FOCUS ON SYMPTOMS

ComparisonsComparisons

AttributionsAttributions

ResponsesResponses

BlameBlame

PessimismPessimism

Irritable Bowel SyndromeIrritable Bowel Syndrome

Common digestive disorderCommon digestive disorder

Functional syndromeFunctional syndrome

Traumatic life events, Personality Traumatic life events, Personality disorders, Stress, Anxiety, Depression disorders, Stress, Anxiety, Depression SomatizationSomatization

Not a psychological disorderNot a psychological disorder

Night-workers & LonersNight-workers & Loners

Psychology important in how symptoms are perceived and reacted toPsychology important in how symptoms are perceived and reacted to

Can poor QoL Become a predictor of who will suffer in advance?Can poor QoL Become a predictor of who will suffer in advance?

The UK Sheep Dipping SagaThe UK Sheep Dipping Saga

The UK Sheep Dipping SagaThe UK Sheep Dipping Saga

UK Sheep dipped twice yearly, and was compulsory 1984 – 1988 UK Sheep dipped twice yearly, and was compulsory 1984 – 1988

Organophosphate Pesticides (Ops) were the dip of choice & recommended Organophosphate Pesticides (Ops) were the dip of choice & recommended by HSE & Governmentby HSE & Government

Routine sheep dipping is wet and messy workRoutine sheep dipping is wet and messy work

NOT usually an acute exposureNOT usually an acute exposure

Chronic and low level exposures more likelyChronic and low level exposures more likely

Non-specific symptoms alleviate 48 hours post-dip Non-specific symptoms alleviate 48 hours post-dip

Dippers’ FluDippers’ FluAnxietyAnxiety DepressionDepression FatigueFatigue Aches & PainsAches & PainsHeadacheHeadache FeverFeverNeurobehavioural problems (memory, concentration)Neurobehavioural problems (memory, concentration)

The UK Sheep Dipping SagaThe UK Sheep Dipping Saga

The UK Sheep Dipping SagaThe UK Sheep Dipping Saga

HeadachesHeadaches

AnxietyAnxiety

FatigueFatigue

DepressionDepression Dippers’ FluDippers’ Flu

Memory lossMemory loss

ConcentrationConcentration

General malaiseGeneral malaise

““Unexplained Symptom Syndrome”Unexplained Symptom Syndrome”

The UK Sheep Dipping SagaThe UK Sheep Dipping Saga

No Chronic Effects Ever FoundNo Chronic Effects Ever Found

• Symptoms should be acute & reversible, NOT chronicSymptoms should be acute & reversible, NOT chronic

• Bio monitoring suggests symptoms should NOT occurBio monitoring suggests symptoms should NOT occur

• No good evidence of chronic effects (except after severe intoxication)No good evidence of chronic effects (except after severe intoxication)

• No reliable pattern to the symptoms reportedNo reliable pattern to the symptoms reported

• No pathological changes observedNo pathological changes observed

Some Short Term EffectsSome Short Term Effects

Exposed FarmersExposed Farmers Control SubjectsControl Subjects

General crampGeneral cramp SneezingSneezingHeadacheHeadache CoughCoughShiverShiver Runny eyesRunny eyesWeak musclesWeak muscles Stiff musclesStiff musclesSleep walkingSleep walking General acheGeneral acheCognitive problemsCognitive problems Pins and needlesPins and needlesJudging distanceJudging distance Buzzing earsBuzzing earsNumb toesNumb toes Itchy skinItchy skinNose bleedsNose bleeds Flaky skinFlaky skinEaracheEarache Trouble sleepingTrouble sleepingFeverFever FlushesFlushes

AggressionAggressionGeneral weaknessGeneral weaknessCoughing bloodCoughing blood

JacksonJackson et al. et al. 2001 2001

Farmers’ ResponseFarmers’ Response Government Response Government Response

Seek media exposureSeek media exposure Initially deny any effectsInitially deny any effects

Pressure groups formedPressure groups formed Commission researchCommission research

Support groups formedSupport groups formed Organize committees / reviewsOrganize committees / reviews

Search for “medicalisation”Search for “medicalisation” Question research resultsQuestion research results

Search for compensationSearch for compensation Minor policy decisionsMinor policy decisions

Commission more researchCommission more research

The Fall Out BeginsThe Fall Out Begins

Why Did Farmers Become Ill ?Why Did Farmers Become Ill ?

Exposed to hazardous chemicalsExposed to hazardous chemicals

Opportunity to blame governmentOpportunity to blame government

Mistrust of governmentMistrust of government

Lack of definitive information Lack of definitive information

Attention from mediaAttention from media

Support of pressure groups *Support of pressure groups *

Isolation of farming life *Isolation of farming life *

Economic stress *Economic stress *

Anti-chemical / pro-organic society *Anti-chemical / pro-organic society *

Farmers seen as intensive polluters *Farmers seen as intensive polluters *

Unpopular with public *Unpopular with public *

More Complicated Than Just OP ExposureMore Complicated Than Just OP Exposure

JacksonJackson et al. et al. 2001 2001

Quality of Life in FarmingQuality of Life in Farming

Satisfaction with Agricultural Life (SAL)Satisfaction with Agricultural Life (SAL)

29 Items29 Items

Found 4 factors concerning QoL in farmersFound 4 factors concerning QoL in farmers

1. The Future of farming1. The Future of farming

2. Outside agencies2. Outside agencies

3. Financial cutbacks3. Financial cutbacks

4. Traditional lifestyle (solitude, limitations, freedom)4. Traditional lifestyle (solitude, limitations, freedom)

More Satisfied Farmers = Reported Fewer SymptomsMore Satisfied Farmers = Reported Fewer SymptomsJackson Jackson et al.et al. 2003 2003

Reflective PersonalityReflective Personality

Perceived FatiguePerceived Fatigue

Stressful Life EventsStressful Life Events

Agricultural DissatisfactionAgricultural Dissatisfaction

Handling Sheep <48hrs post-dipHandling Sheep <48hrs post-dip

AnxietyAnxietyDepressionDepression

Increased SymptomologyIncreased Symptomology

Mental Health Problems of Sheep FarmersMental Health Problems of Sheep Farmers

Satisfaction with Agricultural Life (SAL)Satisfaction with Agricultural Life (SAL)

Jackson Jackson et al.et al. 2003 2003

PathogenPathogenOP sheep dip exposureOP sheep dip exposure

Psychosocial FactorsPsychosocial FactorsStressStressPersonalityPersonalityFatigueFatigueQuality of LifeQuality of Life

Illness Illness Non-specific symptomsNon-specific symptomsDippers’ fluDippers’ flu

Biopsychosocial model of IllnessBiopsychosocial model of Illness

The UK Sheep Dipping SagaThe UK Sheep Dipping Saga

Future Approaches to Studying Non-Specific SymptomsFuture Approaches to Studying Non-Specific Symptoms

• Biopsychosocial approach could better explain other non-specific symptomsBiopsychosocial approach could better explain other non-specific symptoms

• Medical Disease model is limitedMedical Disease model is limited

1. Possibility of no objective measurable diagnostic criteria1. Possibility of no objective measurable diagnostic criteria

2. Contribution of many determinants of illness2. Contribution of many determinants of illness

3. Qualitative & Quantitative methods3. Qualitative & Quantitative methods

4. Better acceptance among the physician community4. Better acceptance among the physician community

5. Quality of Life developed as ill-health predictor5. Quality of Life developed as ill-health predictor

Prevalence of Non-Specific SymptomsPrevalence of Non-Specific Symptoms

Modern day complaintsModern day complaints

Multiple Chemical SensitivityMultiple Chemical SensitivityChronic Fatigue SyndromeChronic Fatigue SyndromeSick Building SyndromeSick Building SyndromeGulf War SyndromeGulf War SyndromeLow-level Chemical ExposureLow-level Chemical ExposureElectrical SensitivityElectrical Sensitivity

Historical complaintsHistorical complaints

Railway SpineRailway SpineNeurastheniaNeurastheniaCombat SyndromeCombat Syndrome

SymptomSymptom Prevalence % Prevalence %

Stuffy noseStuffy nose 46.246.2HeadachesHeadaches 33.033.0TirednessTiredness 29.829.8CoughCough 25.925.9Itchy eyesItchy eyes 24.724.7Sore throatSore throat 22.422.4Skin rashSkin rash 12.012.0WheezingWheezing 10.110.1RespiratoryRespiratory 10.010.0NauseaNausea 9.09.0DiarrhoeaDiarrhoea 5.75.7VomitingVomiting 4.04.0

Heyworth & McCaul, 2001Heyworth & McCaul, 2001

Future Approaches to Unexplained Symptom Syndromes

Accept there may be no Accept there may be no objectively objectively measurable diagnostic criteriameasurable diagnostic criteria

Accept contribution of many determinants of ill healthAccept contribution of many determinants of ill health

Both quantitative and qualitative research methods neededBoth quantitative and qualitative research methods needed

Adjust our own mental models of accepting illnessAdjust our own mental models of accepting illness

Quality of Life important as an “outcome” & “contributor” to illnessQuality of Life important as an “outcome” & “contributor” to illness

UNDERSTANDING ISSUES CONCERNING QUALITY OF LIFE UNDERSTANDING ISSUES CONCERNING QUALITY OF LIFE

MAY RESULT IN EXPLANATIONS FOR SUCH MAY RESULT IN EXPLANATIONS FOR SUCH

SOMATIC SYMPTOM SYNDROMESSOMATIC SYMPTOM SYNDROMES