1. Quality of Life in Oporto and South of Douro Region – Comparison of EQ-5D and SF-36 Introdução à Medicina Turma 6 – 2006/2007

2. Difficult to define. Multidimensional – integrates a lot of concepts that are all interrelated. A possible division is:  Subjective  Objective Not a static definition – varies with time and from person to person. “An uniquely personal perception, denoting the way individual patients feel about their health status and/or non-medical aspects of their lives.” Gill and Feinstein What is Quality of Life (QOL)? Jenney M, Campbell S. Measuring quality of life. Arch. Dis. Child. 1997; 77:347-350 McKevitt C, Redfern J, La-Placa V, Wolfe CDA. Definig and using quality of life: a survey of health care professionals: Clinical Rehabilitation, 2003; 17: 865-870 Felce D, Jonathan P. Quality of Life: Its Definition and Measurement: Research in Developmental Disabilities. 1995, 16 (1); 51-74.

3. What is Quality of Life (QOL)? McKevitt C, Redfern J, La-Placa V, Wolfe CDA. Definig and using quality of life: a survey of health care professionals: Clinical Rehabilitation, 2003; 17: 865-870

4. What is Quality of Life (QOL)? Felce D, Jonathan P. Quality of Life: Its Definition and Measurement: Research in Developmental Disabilities. 1995, 16 (1); 51-74.

5. What is Quality of Life (QOL)? The need to quantify/measure Quality of Life is increasing every day. But why? In order to improve a population’s well being it is necessary to understand its problems and needs – easily perceived through QOL studies. Jenney M, Campbell S. Measuring quality of life. Arch. Dis. Child. 1997; 77:347-350 McKevitt C, Redfern J, La-Placa V, Wolfe CDA. Definig and using quality of life: a survey of health care professionals: Clinical Rehabilitation, 2003; 17: 865-870 Felce D, Jonathan P. Quality of Life: Its Definition and Measurement: Research in Developmental Disabilities. 1995, 16 (1); 51-74.

6. Taxonomy of QOL instruments Generic instruments –Health Profiles (eg: SF-36) –Utility measures (eg: EQ-5D) Specific instruments –Disease-specific (eg: diabetes) –Population-specific (eg: trail elderly) –Function-specific (eg: sexual functioning) –Condition-specific (eg: pain) Joel C, Sumati R, Keininger Dorothy L, Hays Ron D. Comparative Reviem of Generic Quality-of-Life Instruments. USA: Pharmacoeconomics. 2000; 17 (1): 13-35 Coons Stephen Joel, Rao Sumati, Keininger Dorothy L, Hays Ron D. Comparative Reviem of Generic Quality-of-Life Instruments. USA: Pharmacoeconomics. 2000; 17 (1): 13-35

7. Questionnaire designed by EuroQol group Multidimensional, simple and brief Two parts: 1.EQ-5D – 5 item questionnaire (1, 2 e 3) 2.EQ-VAS – visual analogue scale (0-100) Badia X, Schiaffino A, Alonso J, Herdman M. Using the EuroQol 5-D in the catalan general population: feasibility and construct validity. Barcelona: Quality of Life Research, 1998; 7: 311-322 Coons Stephen Joel, Rao Sumati, Keininger Dorothy L, Hays Ron D. Comparative Reviem of Generic Quality-of-Life Instruments. USA: Pharmacoeconomics. 2000; 17 (1): 13-35 Jenkinson C, Gray A, Doll H, Lawrence K, Keoghane S, Layte R. Evaluation of Index and Profile Measures of Health Status in a Randomized Controlled Trial: Comparison of the Medical Outcomes Study 36-Item Short Form Health Survey, EuroQol, and Disease Specific Measures: Medical Care, November 1997; 35(11): 1109-1118, Brooks R, Jendteg S, Lindgren B, Persson U, Björk S. EuroQol: health-related quality of life measurement. Results of the Swedish questionnaire exercise: Health Policy, 1991; 18: 37-48 What is EuroQol instrument? Designed to be used in clinical activities, evaluative programmes, the health policy arena and general populations monitoring Kinds of data: Indicates the extent of problems on the 5 dimensions Self-rated assessment of health status based on the VAS Population-weighted health index

10. What is 36-Item Short Form (SF-36)? Widely used questionnaire Multi-purpose 36-item survey Joel C, Sumati R, Keininger Dorothy L, Hays Ron D. Comparative Reviem of Generic Quality-of-Life Instruments. USA: Pharmacoeconomics. 2000; 17 (1): 13-35 Jenkinson C, Gray A, Doll H, Lawrence K, Keoghane S, Layte R. Evaluation of Index and Profile Measures of Health Status in a Randomized Controlled Trial: Comparison of the Medical Outcomes Study 36-Item Short Form Health Survey, EuroQol, and Disease Specific Measures: Medical Care, November 1997; 35(11): 1109-1118 Myers C, Wilks D. Comparison of Euroqol EQ-5D and SF-36 in patients with chronic fatigue syndrome: Quality of Life Research, March 1999; 8: 9-16 Ware J. SF-36 Health Survey Update: SPINE, 2000; 25: 3130-3139 Designed to be used in clinical practice, research, health policy evaluations and general populations monitoring Kinds of data: Profile – assesses health concepts in 8 dimensions 2 summary measures of health status: –Physical component –Mental component

11. Ware J. SF-36 Health Survey Update: SPINE, 2000; 25: 3130-3139

13. EQ-5D versus SF-36 Joel C, Sumati R, Keininger Dorothy L, Hays Ron D. Comparative Reviem of Generic Quality-of-Life Instruments. USA: Pharmacoeconomics. 2000; 17 (1): 13-35 Jenkinson C, Gray A, Doll H, Lawrence K, Keoghane S, Layte R. Evaluation of Index and Profile Measures of Health Status in a Randomized Controlled Trial: Comparison of the Medical Outcomes Study 36-Item Short Form Health Survey, EuroQol, and Disease Specific Measures: Medical Care, November 1997; 35(11): 1109-1118 Myers C, Wilks D. Comparison of Euroqol EQ-5D and SF-36 in patients with chronic fatigue syndrome: Quality of Life Research, March 1999; 8: 9-16 Ware J. SF-36 Health Survey Update: SPINE, 2000; 25: 3130-3139

14. Personal interviewsHousehold drop-off Mail DIFFERENT TYPES OF METHODS Telephone interviews Group administered Gordon H. Guyatt, David H. Feeny, Donal L. Patrick. Measuring Health-related Quality of Life: Annals of Internal Medicine, 1993; 118: 622-629 How to apply the QOL instrument?

15. Gordon H. Guyatt, David H. Feeny, Donal L. Patrick. Measuring Health-related Quality of Life: Annals of Internal Medicine, 1993; 118: 622-629

16. ADVANTAGESDISADVANTAGES Are relatively inexpensive to administer Can be sent to a wide number of people Respondents can answer at their own convenience No influence uppon respondents The response rates are often low Some groups are more reluctant to respond to this kind of questionnaires (bias) People might be unable to answer some questions Mail Questionnaire Gordon H. Guyatt, David H. Feeny, Donal L. Patrick. Measuring Health-related Quality of Life: Annals of Internal Medicine, 1993; 118: 622-629 Why? Mainly because of VAS

17. Protocol Primary objective –Quantify the health related quality of life (HR-QOL) of the adult population in Oporto and South of Douro region. –Compare measurement scales and subscales and analyse the agreement between two broadly used HR- QOL generic instruments – EQ-5D and SF-36. Secondary objectives –Compare results between typical groups: Age Sex –Compare the results of our study with the results of pre-existing studies.

18. Protocol Study design –Cross-Sectional Survey 1.Cheap 2.Quick 3.No follow up, less resources 4.(Prevalence)

19. Protocol Selection criteria: –General adult population (aged 18 or above) within the Oporto and South of Douro region, living in a household with phone. –Listed telephone numbers. Limitations

20. Protocol Sampling design:

21. Protocol Sampling design: –Random choice of phone numbers from the “Oporto and South of Douro” phonelist using SuperCool Random Number Generator - software which randomly creates a combination of three numbers: Page Column Line Limitations

22. Protocol Sampling design: – According to two studies (1) the overall response rates were 59% and 65.5% – We believe that we will not be able to achieve such level, therefore we will consider 40% of response rate Number of letters= 191 40% = 478 (1)Lubetkin E, Jia H, Franks P, Gold M. Relationship among sociodemographic factors, clinical conditions, and health-related quality of life: Examinig the EQ- 5D in the U.S. general population: Quality of Life Research, 2005; 14: 2187-2196 and Norlund A, Ekberg K, Kristenson M, Linquest Group. EQ-5D in a general population survey – A description of the most commonly reported EQ-5D health states using SF-36: Quality of Life Research, 2005; 14: 1099- 1109

23. Protocol Limitations: – Inhabitants without telephone, or whose phone number is not listed will not be contemplated. This will lead to some bias since there is probably a higher rate of missing contacts among poorer inhabitants. – The phonebook may be outdated or even have lack of address information. This may cause letters not to be delivered.

24. Protocol Limitations: – In the phonebook there are numbers that do not correspond to households (enterprises, hospitals,…). In this cases we will select the next household contact. – Some addresses have more lines than others. More probable to be chosen – bias. – Not all pages of the phonebook have the same number of lines. When the line number generated by the software exceeds the number of lines of a column the count will proceed on the following column.

25. Protocol Data collection: –EQ-5D questionnaire –SF-36 questionnaire Contact method: –2 stages: 1. Mail the questionnaire 2. If inquiries do not answer in 2/3 weeks-time: send another questionnaire 3. 2/3 weeks afterwards, if here is still no answer: contacted by phone Data processing and analysis –Creation of a database in SPSS to analyse our data