1. Development of a Patients Concerns Inventory (PCI): a way of improving out-patient consultation & patient empowerment

2. www.headandneckcancer.co.uk INFORMATION

3. Patient Concerns Inventory A way to help recognise unmet patient needs Applicable to other clinical situations

4. PCI : Aim Develop and pilot a Patients Concerns Inventory (PCI)

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

6. PCI What is the Patients Concerns Inventory (PCI)?

7. Patient Concerns Inventory : Issues they wish to discuss 55 items

8. Patients Concerns Inventory PCI : Professions they wish to see / be referred to 15 people

9. PCI How was the PCI list devised?

10. PCI : Creation A synthesis of issues covered in other HR-QOL questionnaires Locally groups: the laryngectomy support group, head and neck support group, patient research forum, hospital volunteers, ward and out-patient staff and the multidisciplinary head and neck team. Regionally groups: Merseyside and Chester Cancer network and the Cancer Network Partnership Group (MCCN) National groups: National Association of Laryngectomee (NALC) committee and the Survivorship group of the Head and Neck National Cancer Research Institute (NCRI) Clinical Studies Group, 6 th International H&N QOL worshop Patients can tick other issue – so self evolving list

11. PCI : Creation Current version 55 items that the patient can select from as ‘issues they would specifically like to talk about in their consultation / whilst at clinic today’ Also a list of 15 ‘people they would specifically like to talk with either in clinic or by referral’

12. PCI How does the PCI work in practice ?

13. Millsopp L, Frackleton S, Lowe D, Rogers SN. A feasibility study of computer- assisted health-related quality of life data collection in patients with oral and oropharyngeal cancer. Int J Oral Maxillofac Surg. 2006 Aug;35(8):761-4. Identifying unmet needs

14. Millsopp L, Frackleton S, Lowe D, Rogers SN. A feasibility study of computer- assisted health-related quality of life data collection in patients with oral and oropharyngeal cancer. Int J Oral Maxillofac Surg. 2006 Aug;35(8):761-4. Identifying unmet needs

15. Millsopp L, Frackleton S, Lowe D, Rogers SN. A feasibility study of computer- assisted health-related quality of life data collection in patients with oral and oropharyngeal cancer. Int J Oral Maxillofac Surg. 2006 Aug;35(8):761-4. Identifying unmet needs

18. Touchscreen evaluation

22. Patients Concerns Inventory Touchscreen evaluation

23. PCI: results 1 st August 2007 and 30 th April 2008 inclusive SNR patients only Cancer patients under follow-up Exclusions Palliative / recurrence patients Complex benign Bisphosphonate induced jaw necrosis

24. Patient Concerns Inventory : Issues they wish to discuss Rogers SN, El-Sheikha J, Lowe D. A Patients Concerns Inventory (PCI) to reveal patients concerns in a routine head and neck clinic: a pilot study. Oral Oncology – in press 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 Surgery.

25. The median number of issues: 3 IQR 1-6 range 0 to 21 82% selecting at least 1 issue 45 items PCI: results

26. Patients wished to talk with either in clinic or by referral dentist (19%) surgeon (10%) speech and language therapist (10%) Range 0 to 8 with 42% selecting at least one PCI: results

27. The overall median time for completing the TST was 8 minutes (IQR 6 to 11), range 3 to 27) PCI: results

28. 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 PCI: results

29. Only in 4 instances was it ‘quite a bit ’ or ‘very much’ difficult for the volunteer to get the patient to agree to complete the touch-screen. 17% of patients encountered ‘quite a bit’ or ‘very much’ of a problem in completing the touch-screen. -no reading glasses 17% of occasions the carer had had ‘quite a bit’ or ‘very much’ of an input in completing the questions. PCI: results

30. 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

31. Patient derived outcomes in practice Sign posting the patient and carers / family in their cancer journey awareness

32. PCI : Acknowledgements Derek Lowe – Medical statistician Joseph El-Sheikha – Medical Student Ruth Sturgeon – Volunteer Norma Barrowcliff – Volunteer Department Manager Stephen Frackleton – IT support The patients and carers Local and national patients and carers support groups