1. craig.jackson@uce.ac.uk 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

2. Not The Meaning of Life. But Quality

3. 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

4. Pathogen Disease (pathology) ModifiersLifestyle Individual susceptibility Traditional model of Disease Development

5. Pathogen Psychosocial Factors AttitudesBehaviour Quality of Life Illness (well-being) Biopsychosocial model of Illness

6. 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”

7. 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

8. Subjectivity? There’s the catch

9. QoL is NOT..... Being Happy Being disease free Feeling warm and fuzzy MULTIDIMENSIONAL Having money CONCEPT Driving that car Having a good job IT’S ALL OF THE ABOVE AND MORE...

10. AbilityAdaptationAppreciation 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 PoliticsPossibilities Religion Safe Satisfaction Security Self-esteem Society Spirituality Status Stress Truth Well-being Wishes Working Conditions QoL may be...

11. QoL as a Widespread Outcome Reduced Quality of Life observed as outcome in many conditions: Child sexual abuseDickinson et al. 1999 Chronic hep. c Koff, 1999 Rheumatoid arthritisStrombeck et al. 2000 FibromyalgiaStrombeck et al. 2000 Multiple sclerosisShawaryn et al. 2002 ObesitySturm et al. 2001 AsthmaHyland et al. 1995

12. The 3 B’s BeingBelongingBecoming

13. Quality of Life – Systems Models

14. 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

15. 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 scales1819 46% Generic measures scales 865 22% Dimension specific scales 690 18% Utility specific scales 409 15% Individualised scales 62 1% Garratt et al. 2002

16. 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

17. Why use QoL as an Outcome? Pain Fatigue Broader impacts of ILLNESS & TREATMENT Disability PhysicalEmotional Social “Well-being” “Well-being” Subjectivity of Quality Broader impacts need to be assessed and reported by the patient Patient Assessed Measures

18. Generic QoL Assessment Self Evaluation of Quality of Life (Danish EQoL) 308 questions! Good collection of demographic / prognostics data essential: AgeSexHeightWeightMarital statusDomestic ResidenceHousingEducationOccupationIncome GoodsCircumstancesLifestyleExerciseSmoking Social networkFriendsEatingAlcoholDrugs SymptomsHealthSexualitySelf- Perception Life-PerceptionSatisfactionNeed-FulfilmentEthnicity

19. Disease Specific QoL Stroke-Specific Quality of Life Scale ( SS-QOL) 49 items StronglyModeratelyNeitherModeratelyStrongly agreeagreeagreedisagreedisagree “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

20. Disease Specific QoL Stroke-Specific Quality of Life Scale ( SS-QOL) 49 items 12 domains coveredMobility EnergyPhysiology Upper Extremity Function Medical VisionPersonality MoodPsychology Language Cognitive ThinkingSelf-care Social rolesActivity Family Roles Social Work / Productivity

21. 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

22. 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

23. 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....

24. 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?

25. OVER FOCUS ON SYMPTOMS ComparisonsAttributionsResponsesBlamePessimism Factors Influencing Symptom Development Selective Internal Attention Tedious & un-stimulating environment Tedious & un-stimulating environment Little communication Stressful environment Little communication Stressful environment Learned behaviours “Negative Affectivity” Learned behaviours “Negative Affectivity”

26. Factors Influencing Symptom Development Selective External Attention  Heightened concern about risk involuntary involuntary uncontrolled uncontrolled lack of information lack of information dreaded consequences 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 ComparisonsAttributionsResponsesBlamePessimism

27. 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?

28. The UK Sheep Dipping Saga

29. 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 AnxietyDepressionFatigueAches & Pains HeadacheFever Neurobehavioural problems (memory, concentration)

30. The UK Sheep Dipping Saga

32. HeadachesAnxietyFatigue Depression Dippers’ Flu Memory loss Concentration General malaise “Unexplained Symptom Syndrome” The UK Sheep Dipping Saga

33. No Chronic Effects Ever Found Symptoms should be acute & reversible, NOT chronic Symptoms should be acute & reversible, NOT chronic Bio monitoring suggests symptoms should NOT occur Bio 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 reported No reliable pattern to the symptoms reported No pathological changes observed No pathological changes observed

34. Some Short Term Effects Exposed FarmersControl Subjects General crampSneezing HeadacheCough ShiverRunny eyes Weak musclesStiff muscles Sleep walkingGeneral ache Cognitive problemsPins and needles Judging distanceBuzzing ears Numb toesItchy skin Nose bleedsFlaky skin EaracheTrouble sleeping FeverFlushes Aggression General weakness Coughing blood Jackson et al. 2001

35. Farmers’ ResponseGovernment Response Seek media exposureInitially deny any effects Seek media exposureInitially deny any effects Pressure groups formed Commission research Pressure groups formed Commission research Support groups formed Organize committees / reviews Support groups formed Organize committees / reviews Search for “medicalisation”Question research results Search for “medicalisation”Question research results Search for compensationMinor policy decisions Search for compensationMinor policy decisions Commission more research The Fall Out Begins

36. 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 *

37. More Complicated Than Just OP Exposure Jackson et al. 2001

38. 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

39. Reflective Personality Perceived Fatigue Stressful Life Events Agricultural Dissatisfaction Handling Sheep <48hrs post-dip AnxietyDepression Increased Symptomology Mental Health Problems of Sheep Farmers Satisfaction with Agricultural Life (SAL) Jackson et al. 2003

40. Pathogen OP sheep dip exposure Psychosocial Factors StressPersonalityFatigue Quality of Life Illness Non-specific symptoms Dippers’ flu Biopsychosocial model of Illness

41. The UK Sheep Dipping Saga

42. Future Approaches to Studying Non-Specific Symptoms Biopsychosocial approach could better explain other non-specific symptoms Biopsychosocial approach could better explain other non-specific symptoms Medical Disease model is limited 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

43. Prevalence of Non-Specific Symptoms 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 SymptomPrevalence % Stuffy nose46.2 Headaches33.0 Tiredness29.8 Cough25.9 Itchy eyes24.7 Sore throat22.4 Skin rash12.0 Wheezing10.1 Respiratory10.0 Nausea9.0 Diarrhoea5.7 Vomiting4.0 Heyworth & McCaul, 2001

44. Future Approaches to Unexplained Symptom Syndromes n Accept there may be no objectively measurable diagnostic criteria n Accept contribution of many determinants of ill health n Both quantitative and qualitative research methods needed n Adjust our own mental models of accepting illness n 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