1. A Survey of Consultants and Specialists in Restorative Dentistry on their use of HRQOL Questionnaires. QOL in Head & Neck Cancer – 5 th International Workshop Maritime Museum, Liverpool 2 nd & 3 rd November 2006 Adrian Pace-Balzan SpR in Restorative Dentistry Edinburgh Dental Institute

2. Background Aims & Objectives Methods Results Conclusions Aims

3. Background Aims & Objectives Methods Results Conclusions

4. Background The transfer of information between healthcare professionals and their patients is a critically important element in diagnosis, management and patient support - Velikova et al., 2002 HRQOL - essential component to best patient care Data set components - BAOMS & BAO-HNS

5. Background Resistance to the routine use of HRQOL questionnaires within everyday clinical practice Kanatas & Rogers (2004) UK consultant clinicians (BAOMS) 29% used HRQOL questionnaires Lack of resources and proven value Mehanna & Morton (2006) H&N clinicians (ANZHNS) 34% used a QOLQ & only13% currently using one Time-consuming / no proven benefit

6. Background Aims & Objectives Methods Results Conclusions

7. Aims of Study To assess the prevalence of use of HRQOL questionnaires by Consultants and Specialists in Restorative Dentistry undertaking Oral Rehabilitation following treatment for HNC Identify acceptance and barriers for the use of HRQOL outcome measures within the speciality

8. Aims of Study The Liverpool Oral Rehabilitation Questionnaire (LORQ) 40 – item questionnaire specific to patients undergoing oral rehabilitation following HNC Pace-Balzan et al., (2004), (2005) & MPhil thesis (University of Liverpool - 2006)

9. Background Aims & Objectives Methods Results Conclusions

10. Methods – The Survey Questionnaire Section 1 - All clinicians Oral rehabilitation (HNC)? MDT? Previous/current used Intention to use Perceived barriers

11. Methods – The Survey Questionnaire Section 1 - All clinicians Oral rehabilitation (HNC)? MDT? Previous/current used Intention to use Perceived barriers Section 2 - Clinicians with HRQOL experience Used/current use Questionnaires used Patient groups Who distributes Qs How Qs distribute

12. Methods – The Survey Questionnaire Section 1 - All Clinicians Oral rehabilitation (HNC)? MDT? Previous/current used Intention to use Perceived barriers Section 2 - Clinicians with HRQOL experience Used/current use Questionnaires used Patient groups Who distributes Qs How Qs distribute Section 3 Clinicians undertaking oral rehab in HNC patients and using HRQOL outcome measures Questionnaires used Timing of questionnaire Patient recruitment Need another questionnaire Ideal attributes

13. Methods – The Survey Questionnaire Section 1 - All clinicians Oral rehabilitation (HNC)? MDT? Previous/current used Intention to use Perceived barriers Section 2 - Clinicians with HRQOL experience Used/current use Questionnaires used Patient groups Who distributes Qs How Qs distribute Section 3 Clinicians undertaking oral rehab in HNC patients and using HRQOL outcome measures Questionnaires used Timing of questionnaire Patient recruitment Need another questionnaire Ideal attributes Comments about the use of HRQOL questionnaires

14. Methods Members of the Association of Consultants and Specialists in Restorative Dentistry (ACSRD) 2 wave mailing procedure (July/Sept 2005) Other data collected No. yrs post qualification Work setting UK region

15. Statistical Analysis SPSS V11.0 Chi-squared test Fischer’s Exact Test (Yes/No) P<0.05

16. Background Aims & Objectives Methods Results Conclusions

17. Results All Respondents Clinicians with experience of HRQOLQs Clinicians providing Oncology Oral Rehab. Free Text

18. Results All Respondents Clinicians with experience of HRQOLQs Clinicians providing Oncology Oral Rehab. Free Text

19. Results - Response 197 ACSRD members on mailing list 15 retired/no clinical contact 3 no contact address 1 overseas Response rate – 74% (132/178) Better response rate from clinicians Working outside England ( P=0.013 ) More recently qualified ( trend ) Hospital setting ( P=0.047 )

20. Results 42% provided oral rehab following HNC 25% formed part of HNC MDT 19% ever used HRQOLQs No difference whether formed part of MDT Increased use in those Providing oral rehab NE/NW England

21. Results – Future use

22. Clinicians Providing oral rehab Part of HNC MDT Based in England Recently qualified

23. Results -Barriers to HRQOL use Barriers (all respondents)%N Lack of experience with HRQOL evaluation 2735 Lack of staff to administer questionnaires 2128 Insufficient time 1824 Split site working 811 No suitable questionnaire 810 Lack of clinical relevance 56 Difficult to get baseline data 45 Other barriers 1317 No barriers 2634

24. Results All Respondents Clinicians with experience of HRQOLQs Clinicians providing Oncology Oral Rehab. Free Text

25. Results – Clinicians used/using HRQOLQs Which patient groups were included?%N Oncology369 Atrophy287 Hypodontia123 Other *5614 N=25 * Implant supported prosthesis (4), periodontal treatment (3) Cleft (2) edentulism (2) caries(1) tooth wear (1) TMJ (1) & ageing/nutrition/DM (1)

26. Which questionnaires were used?%N Oral Health Impact Profile4812 Oral Health QoL Questionnaire (UK)287 University of Washington QOL Questionnaire205 EORTC H&N C35 Questionnaire41 Liverpool Oral Rehabilitation Questionnaire (LORQ)82 Other questionnaire*328 Not sure41 Results – Which Questionnaires? * Ad hoc (5), GOHAI, OIDP, GHQ (1)

27. Results – Distribution of Questionnaires (Who?) Who helped distribute & collect the questionnaires? %N Consultants369 SHOs123 Nurse Specialist82 Medical students41 SpRs246 Nurses246 SLT00 Other5213

28. How were questionnaires distributed?%N At Clinic8421 By telephone82 By Post369 Computer Input by patients82 By other means00 Results – Distribution of Questionnaires (How?)

29. Results All Respondents Clinicians with experience of HRQOLQs Clinicians providing Oncology Oral Rehab. Free Text

30. Clinicians undertaking oral rehabilitation and using/used HRQOLQs 9Used questionnaires in oral rehabilitation 5Did not use Qs in oral oncology rehab 1Left blank N = 15

31. Results – Which Questionnaires? Oral Oncology Rehabilitation Which questionnaires were used?%N Oral Health Impact Profile406 Oral Health QoL Questionnaire (UK)203 University of Washington QOL Questionnaire335 EORTC H&N C35 Questionnaire71 Liverpool Oral Rehabilitation Questionnaire (LORQ)132 Other questionnaire*71 None335 * Ad hoc

32. Results – Administration of Questionnaires When were the questionnaires administered? 7 Baseline 9 Post treatment Which patient groups were targeted? 7 all patients 2 some patients (selection criteria unstated)

33. Most Important Attributes of an Oral Rehabilitation Questionnaire Acceptability7 Responsiveness7 Appropriateness6 Validity6 Reliability4 Precision3 Feasibility3

34. Results All Respondents Clinicians with experience of HRQOLQs Clinicians providing Oncology Oral Rehab. Free Text

35. 25% (33/132) expressed their views  “ A vital part of our understanding of patient care – outcome - Much under-rated.”  “ An excellent idea.”  “ Extremely important as a measuring tool especially when trying to commission services. “

36. Free Text  “Poor patients - so many questionnaires at such a difficult time.”  “ It may open up problems that we as an institution have no resources to treat.”  “Why don't we just apply previous findings and make it part of "good practice"? Why keep repeating what has been done?”

37. Background Aims & Objectives Methods Results Conclusions

38. Low rate of HRQOLQ usage (19%) Research tool Expected substantial impact on HRQOL Clinicians providing oral rehabilitation following HNC more likely to use/used HRQOLS Few thought that these were not clinically relevant or that no suitable questionnaires existed

39. Conclusions Barriers lack of experience & resources (time /staff) If the role of questionnaires in clinical practice is to be realized then these barriers and attitudes need to be addressed Educational methods e.g Formal teaching at UG level Computer-based methods e.g TST

40. Conclusions The questionnaire is not dictating or influencing whether clinicians use patient-derived outcome measures, but it is the clinical setting and a lack of training and appreciation of the concept of HRQOL. The introduction of the LORQ in the clinical setting is not making the clinical process any simpler and rather may be perceived as introducing an increased level of complexity in patient management.

41. Acknowledgements Simon N Rogers Luke J Dawson Chris J Butterworth Derek Lowe Robert A Howell John I Cawood

42. Thank You Any Questions ?