Development of the Patient Concerns Inventory Why What How When 8

Patient and carers living the aftermath of cancer Development of the Patient Concerns Inventory Major treatments for H&N cancer Major impact on patients and carers of H&N cancer Patient and carers living the aftermath of cancer Many unmet needs at different times Patients and Carers fail to express their concerns Clinicians fail to pick up patients concerns How are concerns identified by CNS using communication skills 8

Identifying concerns has positive benefit Better communication Improved satisfaction Better coping Quicker adaptation Improved HRQOL Reduced health costs There are evidence based interventions

HRQOL questionnaires are limited by their structure and interpretation 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 8

HRQOL questionnaires are limited by their structure and interpretation 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 8

Screening in clinic 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. 8

Touchscreen

Better, stable, worse Screening in clinic UW-QOL v4 Domain scores Importance Freetext

Screening in clinic

Outline Patient Concerns Inventory Why What How When 8

National Associations Patient Concerns Inventory Item generation HRQOL National Associations Patients Carers Head and Neck team Evolving list

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. 8

Patient Concerns Inventory 8

Patients Concerns Inventory Patient Concerns Inventory 8

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

PCI: results 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’ 8

Patient Concerns Inventory : Issues they wish to discuss The median number of issues: 3 IQR 1-6 range 0 to 21 82% selecting at least 1 issue 8

Screening in clinic

Patient Concerns Inventory 8

Outline Patient Concerns Inventory Why What How When 8

Patient Concerns Inventory 8

Outline Patient Concerns Inventory Paper vs Touchscreen Internet 8

No issues Two specific issues Scary issues Multiple issues PCI: Five groups of patients No issues Two specific issues Scary issues Multiple issues Issues not mentioned 8

Outline Patient Concerns Inventory Why What How When 8

Barriers to its introduction Routine Targeted groups Targeted times Patient Concerns Inventory 8

Questions and comments Theoretical framework ? Consultation - communication Health economics Concern severity Holistic assessment Patient experience Intervention Training A lot still to find out about how best to use this tool

Patient Concerns Inventory www.headandneckcancer.co.uk 8