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Why the Patient Concerns Inventory?. Outline. ?. Communication Patient agenda Quality of care Self management Cost-efficient multiprofessional team working Holistic needs assessment. Patients are amazing. Adaptation. To be or not to be, that is the question;
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Outline ? • Communication • Patient agenda • Quality of care • Self management • Cost-efficient multiprofessional team working • Holistic needs assessment
Patients are amazing Adaptation 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, Hamlet Act 3 Scene 1 Soliloquy
HRQOL questionnaires Many different questionnaires Pale reflection of what is really going on
HRQOL questionnaires • 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
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
Identifying appearance issues • 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 Lynne Millsopp et al BJOMS 2006; 44: 358-363
Identifying concerns has positive benefit Better communication Improved satisfaction Better coping Quicker adaptation Improved HRQOL
How are concerns identified • Majority were CNS • Really important • Key role and better placed that the doctors • Informally in clinic based on communication skills
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.
Screening in clinic UW-QOL v4 Domain scores Better, stable, worse Importance Freetext
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.
Patient Concerns Inventory Item generation HRQOL Head and Neck team National Associations Patients Carers Evolving list
Patient Concerns Inventory e-health-insider: Best use of IT in patient and citizen involvement in healthcare
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 The median number of issues: 3 IQR 1-6 range 0 to 21 82% selecting at least 1 issue
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’
Consultations 1st June 2013 Invest in more focused consultations
PCI: Four groups of patients • No issues • Two specific issues • Scary issues • Multiple issues
Patient Concerns Inventory Sign posting the patient and carers / family in their cancer journey awareness
Patient Concerns Inventory Positive affirmation
PCI evaluation • Papers thus far • Initial Assessment • Concept • Methodological • Impact on clinic • Validation • Fear of recurrence • Other conditions
PCI evaluation PCI across sites and stage
Patient Concerns Inventory 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 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 intervention support Sign posting the patient and carers / family in their cancer journey Anxiety / depression Fears of recurrence Appearance Intimacy Self-esteem awareness
Patient Concerns Inventory : Clinical research Patient experience
Patient Concerns Inventory : Clinical research Patient experience Relevant research
Patient Concerns Inventory : Clinical research Patient experience Improved services / care Relevant research
PCI at Aintree Development one clinic
PCI at Aintree Development one clinic Development two clinics
PCI at Aintree Development one clinic Development two clinics Development four clinics
PCI at Aintree Development one clinic Development two clinics Development four clinics Development network
PCI at Aintree Development one clinic Development two clinics What next? Development four clinics Development network
Questions and comments Other chronic diseases Theoretical framework ? Consultation - communication Health economics Outcome measure Web-based Concern severity Holistic assessment Patient experience Intervention Training A lot still to find out about how best to use this tool