1. Why the Patient Concerns Inventory?

2. Communication Patient agenda Quality of care Self management Cost-efficient multiprofessional team working Holistic needs assessment Outline

3. Patients are amazing To be or not to be, that is the question; Whether 'tis nobler in the mind to suffer The slings and arrows of outrageous fortune, Or to take arms against a sea of troubles, Adaptation Hamlet Act 3 Scene 1 Soliloquy

4. HRQOL questionnaires Many different questionnaires Pale reflection of what is really going on

5. Patients experience a range of problems of different intensities, at different times HRQOL questionnaires are limited by their structure and interpretation BUT HRQOL questionnaires can help identify patients doing badly HRQOL questionnaires

6. Patients and Carers fail to express their concerns Male High proportion of age 16 school leavers Lower social class Low self esteem Tend not to complain Clinical setting is intimidating

7. 278 oral and oropharyngeal SCC Cross-sectional survey Appearance question on UW-QOL 114 (41%) were concerned 7 was it mentioned in the casenotes 4 documented help -2 scar revision -2 oral rehabilitation Identifying appearance issues Lynne Millsopp et al BJOMS 2006; 44: 358-363

8. Identifying concerns has positive benefit Better communication Improved satisfaction Better coping Quicker adaptation Improved HRQOL

9. How are concerns identified  Majority were CNS  Really important  Key role and better placed that the doctors  Informally in clinic based on communication skills

10. Touchscreen

11. Rogers SN, Lowe D Screening for dysfunction to promote MDT intervention using the University of Washington Quality of Life questionnaire (UW-QOL) Archives of Otolaryngology Head & Neck Surg. 2009; 135: 369-375. Screening in clinic

12. Domain scores Importance Freetext Better, stable, worse UW-QOL v4

13. Patient Concerns Inventory : Issues they wish to discuss Rogers SN, El-Sheikha J, Lowe D. The development of a Patients Concerns Inventory (PCI) to help reveal patients concerns in the head and neck clinic. Oral Oncol. 2009; 45: 555-561.

14. Item generation HRQOL Head and Neck team National Associations PatientsCarers Evolving list Patient Concerns Inventory

15. e-health-insider: Best use of IT in patient and citizen involvement in healthcare

16. PCI – H&N : New platform

17. The overall median time for completing the TST was 8 minutes (IQR 6 to 11), range 3 to 27) PCI: results The length of the consultation with TST - median (IQR) 8 (5 to 10) minutes The length of the consultation without TST - median (IQR) 7 (4 to 14) minutes The median number of issues: 3 IQR 1-6 range 0 to 21 82% selecting at least 1 issue

18. 62% patients felt it made a very much /quite a bit difference to their consultation Patient comments: -’it made it a bit more personal’ - ‘reminds me of the points I want discuss’ - ‘allows consultation to get straight to the point’ -’ encourages me to talk about things I would otherwise not discuss’ -’if it helps you its fine by me’ PCI: results

19. Consultations 1st June 2013

20. Invest in more focused consultations

21. No issues Two specific issues Scary issues Multiple issues PCI: Four groups of patients

22. Sign posting the patient and carers / family in their cancer journey awareness Patient Concerns Inventory

24. Positive affirmation

25. Papers thus far Initial Assessment Concept Methodological Impact on clinic Validation Fear of recurrence Other conditions PCI evaluation

26. PCI across sites and stage PCI evaluation

27. Screening in clinic

28. Royal College Surgeons England

29. A total of 106 patients were included, 52 before and 54 after the introduction of the PCI. Data collection included observational data made during the consultation about which issues were discussed and which multidisciplinary health professionals were referred to. Patient Concerns Inventory

30. The PCI made little difference to the length of the consultations with a mean length of 5.4 minutes before and 5.6 minutes following its introduction. There was a significant increase in the number of issues discussed in consultation from a mean 2.5 to 3.9 (p=0.07). Patient Concerns Inventory

31. Sign posting the patient and carers / family in their cancer journey awareness Patient Concerns Inventory support intervention Anxiety / depression Fears of recurrence Appearance Intimacy Self-esteem

32. Patient Concerns Inventory : Clinical research Patient experience

33. Patient Concerns Inventory : Clinical research Patient experience Relevant research

34. Patient Concerns Inventory : Clinical research Patient experience Relevant research Improved services / care

35. Patient Concerns Inventory : Issues they wish to discuss

36. PCI at Aintree Development one clinic

37. PCI at Aintree Development one clinic Development two clinics

38. PCI at Aintree Development one clinic Development two clinics Development four clinics

39. PCI at Aintree Development one clinic Development two clinics Development four clinics Development network

40. PCI at Aintree Development one clinic Development two clinics Development four clinics Development network

41. Questions and comments A lot still to find out about how best to use this tool