QOL

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Development of a Patients Concerns Inventory
(PCI) a way of improving out-patient
consultation patient empowerment
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www.headandneckcancer.co.uk
INFORMATION
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Patient Concerns Inventory

• A way to help recognise unmet patient needs
• Applicable to other clinical situations

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PCI Aim

• Develop and pilot a Patients Concerns Inventory
  (PCI)

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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

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PCI

• What is the Patients Concerns Inventory (PCI)?

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Patient Concerns Inventory Issues they wish to
discuss

• 55 items

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Patients Concerns Inventory
PCI Professions they wish to see / be referred
to

• 15 people

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PCI

• How was the PCI list devised?

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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, 6th International HN QOL worshop
• Patients can tick other issue so self evolving
  list

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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

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PCI

• How does the PCI work in practice ?

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Identifying unmet needs
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 Aug35(8)761-4.
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Identifying unmet needs
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 Aug35(8)761-4.
15
Identifying unmet needs
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 Aug35(8)761-4.
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Identifying unmet needs
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Identifying unmet needs
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Touchscreen evaluation
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Touchscreen evaluation
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Touchscreen evaluation
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Touchscreen evaluation
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Patients Concerns Inventory
Touchscreen evaluation
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PCI results

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

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

• 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

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PCI results

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

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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

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PCI results

• 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.

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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

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Patient derived outcomes in practice
awareness

• Sign posting the patient and carers / family in
  their cancer journey

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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