1. HRQoL workshop/Liverpool/ 20061 The extent of use and preference of a suitable HRQoL instrument for routine clinical use in head & neck cancer patients - The Malaysian Experience Dr. Jennifer G Doss¹ Professor W Murray Thomson² Associate Professor Raja Latifah Raja Jallaluddin¹ ¹Dental Faculty, University of Malaya, Malaysia ²School of Dentistry, University of Otago, NZ

2. HRQoL workshop/Liverpool/ 20062 Introduction Health-related quality of life (HRQoL) is an important end-point in oncology patients. Incorporating HRQoL measurement routinely in head and neck patient management would enable specialists to better assess impact of disease and treatment The active involvement and contributions of specialists managing head and neck patients are essential in the process of adapting and validating an existing HRQoL instrument for routine use

3. HRQoL workshop/Liverpool/ 20063 In Malaysia Use of HRQoL instruments currently confined to research purposes only None of the H&N cancer HRQOL instruments have been cross-culturally adapted and validated for routine use in a clinical setting There are only sporadic efforts by specialists to obtain HRQoL data routinely in clinics

4. HRQoL workshop/Liverpool/ 20064 Aims of Study To explore the extent of use of HRQoL instruments among specialists on head & neck cancer patients To ascertain specialists’ preference for a HRQoL instrument for routine use in a clinical setting

5. HRQoL workshop/Liverpool/ 20065 Method A one-day workshop was conducted Target Participants Specialists based in 5 government and 3 university hospitals throughout 6 main states in Malaysia Multi-disciplinary team of oncologists, ENT surgeons, OMF surgeons, oral pathologists, nursing staff and counselors

6. HRQoL workshop/Liverpool/ 20066

7. 7 Method Workshop Questionnaires Focus group Discussions (FGD)

8. HRQoL workshop/Liverpool/ 20068 Questionnaires 1. Socio-demographic details of participants 2. Extent of use of HRQoL instruments (Kanatas,2004) 3. Score in terms of importance 5 suitable criteria required of a HRQoL instrument in a clinical setting* 4. Evaluate quantitatively 3 most commonly used HRQoL instruments based on these 5 suitable criteria i) EORTC-H&N ii) FACT-H&N (v 4.0) iii) UWQOL (v 4.0)

9. HRQoL workshop/Liverpool/ 20069 Focus Group Discussions Qualitative evaluation of i) EORTC-H&N ii) FACT-H&N (v 4.0) iii) UWQOL (V 4.0) In terms of identifying Suggestions for adapting an existing questionnaire for head and neck cancer patients in Malaysia

10. HRQoL workshop/Liverpool/ 200610 Criteria AcceptabilityFeasibilityPracticality Interpretability of Scores Applicability Suitable Criteria for a HRQoL instrument in a clinical setting Based on a review of literature (Hyland,2003; Higginson and Carr,2001; Thornicroft and Slade, 2000)

11. HRQoL workshop/Liverpool/ 200611 Suitable Criteria for a HRQoL tool for routine use in a clinical setting Applicability of the HRQOL instrument in terms of relevance and completeness in coverage of items and domains to a head & neck cancer patient Score (1-10) Feasibility for routine use in a clinical setting-length of HRQOL instrument in terms of respondent and interview burden Acceptable format of suitable wording of items and response format for patients that is clear & easy to understand Interpretability of scores – the ease of interpreting scores in a clinically meaningful way to improve clinical decision making Practicality of using the instrument in terms of training staff and infrastructure to support collection of data

12. HRQoL workshop/Liverpool/ 200612 Results 1) Profile of Patients 2) Extent of Use of HRQoL instruments 3) Suitable Criteria for a routine HRQoL instrument 4) Evaluation of 3 HRQOL instruments a) Quantitative results b) Qualitative results

13. HRQoL workshop/Liverpool/ 200613 Profile of Participants A total of 18 participants (72%) Government (50%) and university (50 % ) hospitals Equal gender distribution 30-40yr old (50%), 41-50yr old (38.9% ), 51-60yr old (11.1% ) Working experience mostly > 10years (77.8%); 6-10 yrs (16.7% ) ; 1-5yrs (5.6%) Oncology related working experience mostly > 10years (50% ) ; 6-10yrs (27.8% ) ; 1-5yrs ( 22.2% )

14. HRQoL workshop/Liverpool/ 200614 Specialties 55.6% 16.7% 11.1% 5.6%

15. HRQoL workshop/Liverpool/ 200615 Extent of Use of HRQoL Instruments Slightly less than half (47.1%) had used UWQOL (50%) ; EORTC (25%) ; other simplified questionnaires (25%) Pre- and post-treatment (62.5%) Used mostly on Oral and NPC patients undergoing surgery (62.5% ) Distributed either by research clerks /nurses (62.5%) and clinical nurses (37.5%) mainly in clinics (87.5%)

16. HRQoL workshop/Liverpool/ 200616 Benefits of use - Qualitative responses  Provides useful feedback on patient’s condition and side-effects during treatment and follow-up  Provides info on how patients cope at home with family and friends  Gives info on general outcomes of treatment  Allows appreciation of patient’s point of view  Helps to plan for better management and support for patients

17. HRQoL workshop/Liverpool/ 200617 Problems identified during use - Qualitative responses  Time-consuming; patients get annoyed  Patients’ interpretation of questions is different  Requires translation into different language for non-English-speaking patients  Manpower shortage  Difficult to do on busy clinic days

18. HRQoL workshop/Liverpool/ 200618 Reasons for not using HRQoL instruments - Qualitative responses  No knowledge of such questionnaires  Have not considered going into specific QoL assessment  None developed or validated for Malaysian use with appropriate language translation  Not part of patient management protocol  Not easy to use on daily basis because of workload  Not so easy to decide which one to use

19. HRQoL workshop/Liverpool/ 200619 Criteria for a suitable routine HRQoL instrument Partici- pant no FeasibilityAcceptabilityApplicabilityInterpretation of Scores PracticalitySum of Scores 1 1088 46 Raw scores (1-10) Partici- pant no FeasibilityAcceptabilityApplicabilityInterpretation of ScoresPracticality 10.217 (10/46) 0.174 (8/46) 0.174 (8/46) 0.217 (10/46) 0.217 (10/46) 2 Sum of weighted scores e.g. weighted scores

20. HRQoL workshop/Liverpool/ 200620 3) Criteria for a suitable HRQoL instrument Ranking of importance based on sum of weighted score Results Rank of Importance Suitable Criteria Of HRQoL tool Sum of weighted score 1 Acceptability 3.525 2 Feasibility 3.469 3 Practicality 3.438 4 Interpretability of HRQoL scores 3.296 5 Applicability 3.271

21. HRQoL workshop/Liverpool/ 200621 Evaluation of EORTC,FACT-H&N & UWQOL against the 5 criteria a) Quantitative aspects Scores (raw & weighted) for 5 criteria b) Qualitative aspects Specialists’ suggestions for adapting one of these questionnaires for Malaysian head & neck patients

22. HRQoL workshop/Liverpool/ 200622 Evaluation of EORTC, FACT-H&N & UWQOL against each criterion Applicability (raw score min-max : 1-10) Participant no 123 EORTC-H&N1057 FACT-H&N998 UWQOL768 Sum of raw scores 262023 Applicability (calculation of weighted score w) Participant no 12 Sum of w1-w18 scores EORTC- H&N 0.385O.25 x FACT-H&N0.3460.45 Y UWQOL0.2690.30 z Table A Table B

23. HRQoL workshop/Liverpool/ 200623 Results – Quantitative 4a) Summary of weighted scores of 5 criteria in EORTC, FACT-H&N & UWQOL AcceptabilityFeasibilityPracticalityInterpretaion of scores Applicability EORTC- H&N 5.969 (x) 5.445.9776.1156.13 FACT- H&N 6.388 (Y) 7.0056.3626.1915.777 UWQOL5.641 (z) 5.5445.665.6916.112

24. HRQoL workshop/Liverpool/ 200624 Evaluation Matrix AcceptabilityFeasibilityPracticalityInterpretation of scores Applicability EORTC- H&N *** *** FACT- H&N *** * UWQOL*****

25. HRQoL workshop/Liverpool/ 200625 Suggestions from qualitative responses Add ‘betel quid chewing habit’ Add in ‘spiritual aspect’ Add ‘shoulder function’ Add ‘I worry about how my family will cope after I pass away’ Item GE5 ‘I worry about dying’ is insensitive & could be replaced with item GE6 ‘I worry that my condition will get worse’

26. HRQoL workshop/Liverpool/ 200626 The meaning of ‘partners’ needs to be clarified or changed to ‘spouse’ Item H&N7-’swallowing’ needs to be specified as ‘swallowing liquids or solids’ Shorten response options Needs comprehensive guide & training for interviewers Suggestions from qualitative responses

27. HRQoL workshop/Liverpool/ 200627 Conclusion There is a general lack of use of HRQoL instruments among specialists managing head and neck cancer patients in Malaysia Specialists who had previously used these instruments noted definite benefits in the management of their patients However, some problems were identified during the use of these instruments especially during busy clinic days.

28. HRQoL workshop/Liverpool/ 200628 Conclusion Specialists’ preferences for criteria suitable for a HRQoL for routine use in a clinical setting (in order of importance) are: (1) Acceptability (2) Feasibility (3) Practicality (4) Interpretability of scores (5) Applicability FACT-H&N was the preferred HRQoL instrument, meeting 4 out of these 5 criteria for routine clinical use. However, some suggestions were made to adapt this questionnaire for use in Malaysia.

29. HRQoL workshop/Liverpool/ 200629 Acknowledgements Appreciation to the Oncologists, ENT surgeons, Oral Maxillofacial Surgeons, Oral Pathologist, Nursing Staff and Counsellor who participated in the workshop, and to the Oral Cancer Research and Coordinating Centre and Pharmaniaga Sdn Bhd for funding this workshop

30. HRQoL workshop/Liverpool/ 200630