1. H EALTH R ELATED Q UALITY OF L IFE Fowad Khurshid PHCL 431 1

2. Q UALITY OF L IFE “Quality of life” concept emerged in US after World War II Attempted to describe the effect of the acquisition of material goods on people’s lives Concept of health also reassessed after World War II by WHO Rather than being defined as the absence of disease, it incorporated the perception of complete physical, mental, and social well-being 2

3. F ACTORS A FFECTING Q UALITY OF L IFE 3

4. D EFINITIONS OF Q UALITY OF L IFE Quality of life is the degree of need and satisfaction within the physical, psychological, social, activity, material and structural area (Hörnquist, 1982). Quality of life is the subjective evaluation of good and satisfactory character of life as a whole (De Haes, 1988). Health related quality of life is the subjective experiences or preferences expressed by an individual, or members of a particular group of persons, in relation to specified aspects of health status that are meaningful, in definable ways, for that individual or group (Till, 1992). Quality of life is a state of well-being which is a composite of two components: 1) the ability to perform everyday activities which reflects physical psychological, and social well-being and 2) patient satisfaction with levels of functioning and the control of disease and/or treatment related symptoms (Gotay et al., 1992). An individual’s perception of their position in life in the context of the culture and values systems in which they live and in relation to their goals, expectations, standards and concerns (WHO Quality of life Groups, 1993). 4

5. N O CLEAR DEFINITION BECAUSE Many possible definitions Multi-dimensionally Subjective Related to society 5

6. N O CLEAR DEFINITION BECAUSE Different origins of research: Clinical decision making : Does the patient benefit from the treatment? Epidemiology (public health): what is the morbidity of the population? Health economics : Is it worth the money? 6

7. Q UALITY OF L IFE 7 Core Domains Psychological Social Occupational Physical Typical items Depression/Anxiety/ Adjustment to illness Personal relationships, sexual interest, social & leisure activities Employment, cope household Pain/mobility/sleep/sexual functioning

8. H OW TO MEASURE QUALITY OF LIFE FORM A CLINICAL POINT OF VIEW ? Choose items Are you able to walk one kilometer ? Do you feel depressed ? Choose response mode Binary yes / no Multiple (Likert) yes / at bid / hardly / no Continuous ( Visual Analogue Scale ) Always ———— X — — Never Combine items to dimensions of quality of life Sum up the items belonging to one dimension Rescale sum on a scale from 0 to 100 8

9. H EALTH - RELATED QUALITY OF LIFE (HRQL) Assessment includes the effect of health on well- being using environmental and economic features of the study population Outcome measures may include patient-reported levels of pain, emotional and psychological status as well as levels of functioning 9

10. H EALTH - RELATED QUALITY OF LIFE (HRQL) HRQL is a concept that reflects an individual’s perception of how an illness and its treatment affect life. HRQL instruments are necessary to quantify the burden of a disease and functional impairment in survivors Generic or disease specific 10

11. ATTRIBUTES OF HRQ O L Disease, disorder Impairment Disability Handicap 11

12. E XAMPLES OF IMPAIRMENTS, DISABILITIES AND HANDICAPS 12 Impairments Pain Fatigue Anxiety Depression Incontinence Disabilities Bathing Dressing Climbing stairs Ability to work Partnership problems Handicaps Physical independence Mobility Social integration Orientation Economic self- sufficiency

13. I NSTRUMENTS FOR A SSESSING Q O L Generic instruments These instruments can be used with any population. They generally cover perceptions on overall health and also questions on social, emotional and physical functioning, pain and self-care. Can be universally applied With limitations, allow comparisons of different diseases or populations Do not allow disease-specific aspects to be studied Specific instruments This type of instrument evaluates a series of health dimensions specific to a disease. Specific disease instruments are more comprehensive 13

14. GENERIC VERSUS DISEASE- SPECIFIC INSTRUMENTS TypeAdvantagesDisadvantages Generic or general Broadly applicableMay not be responsive to changes in health Summarizes range of concepts May not be relevant for specific populations May detect unanticipated effects Results may be difficult to interpret Disease specific More relevant for specific populations Cannot compare across populations More responsive to changes in health Cannot detect unanticipated effects 14

15. EXAMPLES OF GENERAL HRQOL MEASURES General Health Status Instruments 15 Medical Outcome Study Short-Form Health Surveys (MOS- SF)4,5,6,7 (includes SF-12, SF-36, and SF-36 Version 2) EuroQol-5D (EQ-5D)11 Quality of Well-Being (QWB) Scale12 Sickness Impact Profile (SIP)14 Dartmouth COOP15

16. EXAMPLES OF DISEASE-SPECIFIC HRQOL MEASURES Hypertension  Health Status Index (HSI)16  The Subjective Symptom Assessment Profile17 Benign Prostatic Hyperplasia  American Urological Association Symptom Index (AUASI)18  BPH Impact Index19 Asthma and Allergy  Living with Asthma Questionnaire20  Life Activities Questionnaire for Adult Asthma21 Diabetes Mellitus  Diabetes-Specific QoL Instrument (DQOL)22 16

17. G ENERIC I NSTRUMENTS FOR A SSESSING Q O L QoL QuestionnairesAdministered by Short-Form 36 (SF-36)Self Sickness Impact ProfileObserver Beck Depression InventoryObserver Hamilton Depression Rating Scale Observer Center for Epidemiological Studies of Depression Observer Hamilton Anxiety ScaleObserver Fatigue Severity ScaleSelf 17

18. SF-36 Brief, comprehensive self report questionnaire - 36 items - 8 subscales (health concepts) 8 dimensions of health Physical functioning (10 items) Role limitation due to physical problems (4 items) Pain (2 items) General health perception (6 items) Energy / vitality (4 items) Social functioning (2 items) Role limitation due to emotional problems (3 items) Mental health (5 items) 18

19. A PPROACHES TO CROSS - CULTURAL INSTRUMENT DEVELOPMENT Sequential approach (transfering an existing questionnaire to another culture, e.g. SF-36 Health Survey) Parallel approach (assembling an instrument based on existing scales from different cultures, e.g. EORTC QLQC30) Simultaneous approach (cooperative cross-cultural development of a questionnaire, e.g. WHO-QOL) 19

20. S TEPS IN INSTRUMENT DEVELOPMENT Item development (focus groups; expert pannel; cognitive debriefing)... Translation (foreward, backward, piloting) Psychometric testing (reliability, validity, responsiveness) Norming (representative population sample, weighing ) 20

21. A SSESSMENT OF Q O L INSTRUMENTS (I) Validity: ability to distinguish QoL of patients with different levels of health status Interpretability: measurement expresses small, moderate, serious change or improvement in QoL 21

22. A SSESSMENT OF Q O L INSTRUMENTS (II) Reliability / reproducibility: same results for repeated measurement Sensitivity / Responsiveness: ability to detect small but clinically significant changes in QoL 22

23. V ALIDATION PHASES 23 Outlook (qualitative) face validity – language – outlook, letter size – simplicity content validity Content (quantitative) criteria validity construct validity – convergence – divergence reliability – internal consistency – reproducibility

24. L OCAL ADAPTATION OF Q O L INSTRUMENTS Validity of different language versions has to be equal with the validity of the original version Mirror translation is not recommended 24

25. H OW A RE Q O L M EASURES U SED IN THE H EALTHCARE S ETTING ? Useful to incorporate into: Cost-effective analyses Health policy people use QoL to add the “human” impact into cost- effective analyses Clinical Trials How do interventions and outcomes alter QoL? Everyday clinical practice QoL potentially a major factor for both doctor and patient considering whether to try specific therapies (ie chemotherapy in advanced cancers) Epidemiological studies 25

26. Q UALITY OF LIFE ASSESSMENT CAN :- Provide data to assist patient and doctor with decision making about treatments Help evaluate outcome of different treatments in outcome trials Identify patients who might benefit from supportive interventions To be used to inform policy and resource allocation Reveal benefits to patients despite objective toxicity be of prognostic value in determining which patient is most likely to benefit from treatment 26

27. U SE OF QOL Indicator of psychological distress Aide referral Prognostic value - predictive of treatment outcomes Decision making tool 27

28. C HOOSING A TEST TO MEASURE QUALITY OF LIFE Generic or specific test Index or profile Single instrument or battery? Is it suitable for target population Is it psychometrically sound? Which response format is used? What is the time frame? Method of administration Who will complete assessment? 28

29. M ETHODS OF ADMINISTRATION Face to face interview by trained interviewers telephone interviews self-report questionnaires pencil and paper computer - touch screens and so on 29

30. W HY DOCTORS DO NOT MEASURE Q UALITY OF L IFE They feel that clinical judgement is sufficient Do not know which tests to use Feel it takes too much time Think that the patient will get upset Do not know how to analyse tests Do not know how to interpret data 30

31. T HANK YOU 31