Health Related Quality of Life in Clinical Practice Sheila E Fisher

1
Health RelatedQuality of Life inClinical
Practice Sheila E Fisher

• Quality of Life in HN Cancer
• 5th International Meeting,
• Liverpool, 2nd November 2006

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Aims of Talk

• To set the work in context
• To report on data from the first (pilot) study
• To consider barriers to routine QoL assessment
• To give an overview of the main study methodology
  and how it addresses those challenges
• To report on early results
• To explore the potential for the future

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Personal National evolution

• 1980s 1990s
  2000 2003
• Surgical NHS
  Academic NCRI
• Training Consultant
  Clinician CSG
• 1995
  2004 2006
• 
  Calman-Hine DH Cancer
  Kings Fund
• 
  report targets
  review
• Incremental increase in research interest
  in areas directly relevant to HN practice

4
Early Studies

• Patient support
• rating of very helpful support on 0-5
  Likert scale
• (Broomfield, Fisher et al, Journal of
  Cancer Education 1997, 12, 4, 229-232)
• Surgery QoL
• Does function preserving surgery result in
  better overall QoL?
• (Rogers, Fisher et al British Journal of
  Oral Maxillofacial Surgery, 2002, 40,11-18)

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PhD Pilot Study Method

• Cross sectional study
• 12 consecutive MDT clinics
• Questionnaire choice by MDT focus group
• Questionnaires used as part of routine care
• No help given to fill in questionnaire
• 171 eligible patients
• 146 completed
• Population demographics comparable with large
  series

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Issues from scoring
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What are the issues arising from this slide ?

• 129 from 146 patients scored below our cut off on
  at least one question
• Is this true unmet need?
• 40 lowest scoring patients contacted by CNS (with
  permission)
• 30 new problems identified by the questionnaire
  (otherwise missed)
• CNS clinical nurse specialist

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CNS Intervention required
40 patients
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Acceptability in Clinic

• Helped talk to the doctors?

147 responses
10
Patient feedback

• Continued use?

147 responses
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So why do we not use QoLin routine practice?
12
Clinician Results

• Much more difficult, 39 responses
• Helpful or very helpful 18
• Interfered with priorities 8
• Recorded additional intervention 1

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Data

• What ?
• When ?
• To whom ?
• In what form ?
• What then happens?

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Conclusions

• Questionnaire can identify issues in individual
  patient care
• Problems may not be identified by overall score
• Patients supported the use of the questionnaire
• Patients found it helped them raise issues with
  their
• doctors
• Clinicians too time consuming, did not alter
  management
• From literature, an area of growing interest
• Work in same field well established in Leeds
  (Selby, Velikova, POG)

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Overcoming barriers

• The RIGHT information to
• the APPROPRIATE team member at
• the RIGHT time
• conveying the PATIENT need and
• PRESENTED in the best format

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Design of study

• Carefully developed and structured
  questionnaires can be used to improve the quality
  of life of head and neck cancer patients

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Current Work

• Use new technology (integrated clinical and
  clinical trial database)
• Use questionnaires in HN practice, general, HN
  specific and psychological measures
• Assess patient views on content and wording of
  questionnaires and individual questions
• HN cancer patients and subgroups

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Questionnaires

• Assess opinion Attitude questionnaire
• (Detmar et al, JCO, 2000 Velikova et al, JCO,
  2004)
• General SF-36v2, EORTC QLQ C30, FACT-G
• HN EORTC, FACT, UWQoLv4
• Psychological HADS and MHI 5
• (Cull et al, BJC, 85, 1842-1849)

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Assessing Opinion

• 
  
  Not at A Quite
  Very
• 
  
  all little a
  bit much
• 26. Has your physical condition or medical
  treatment
• interfered with your family life?
  
  1 2 3
  4
• 
  
  Not at A Quite
  Very
• 
  
  all little a
  lot
• 
  
  
• 26 (a) How important do you think this
  question is? 1
  2 3 4
• 
  
  Very Poorly Well
  Very
• 
  
  poorly
  well
• 26 (b) How well written is this question?
  1
  2 3 4

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Concerns Actuality

• Data burden
• Acceptability
• Technology very
• acceptable
• 102 patients
• accrued
• 150 target

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Features of Integrated Database

• Clinical care (PPM), records patient
  demographics, staging, treatment, clinic
  annotations, letters etc.
• Clinical trials database, identifies eligibility,
  flags patients, tracks progress
• Integrated database linking the 2 functions
• Uploaded from central database
• Can be used remotely outlying clinics, patients
  homes etc. ? other networks.

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Patient Pathway Manager Switchboard
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• Patient Pathway Manager Patient Browser

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• Patient Pathway Manager Trial Browser (Trial
  Information)

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• Patient Pathway Manager Trial Browser (Patient
  Study Episode)

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Accrual to Date

• 103 patients entered
• 22 refused
• 102 usable records
• 19 follow up records
• Groups early oral, late oral
• early larynx, late larynx
• thyroid

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Interim results

• Patient attitude to Consultation content (122)

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Interim results

• Perceived content of Consultations 9 items (122)

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Questions

• Who asks what? Clinician variance
• Speciality
  variance
• Who should ask what?
• How does this relate to reality? Tape
  Consultation analysis should clarify
• Emotional aspects (Macmillan listening study)
• Fall off with softer/social issues doctor or
  other MDT member appropriate
• Can we identify training needs/prompts?

33
Choice of Questionnaire
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Questionnaire Evaluation
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HN Questionnaires

• Individual question approach
• Looking for site specific ratings in view of
  different cancer journey and challenges
• Ceiling effect to date

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Thoughts to date

• Questionnaire choice complex
• Need tape data with WHY
• Trends emerging
• Clinician views?
• Can we combine individual patient assessment
  (IPA) and monitoring of standards / interventions?

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IPAs

• Individual Patient
• Evaluation
• Guidance
• Evolves through system of care
• Adapts to agreed priorities (patient / health
  professional)
• Accepts what cannot be changed
• Sets targets for achievement

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Future (IPAs)

• In clinic feedback on status
• Improvements and deteriorations
• Flag up worrying symptoms
• Training package
• Individualised evolving assessment
• Set to individual baseline
• Tool for communication in team
• with
  primary
• care
  
• to
  PATIENT CARER

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IPAs

• Will not
• Act as a reproducible benchmark for a service
• Assess populations
• Assess effectiveness of interventions
• Become a psychometrically validated questionnaire

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Aspiration for IPAs

• To make the cancer journey a less scary place
• for PATIENTS carers
• for MDT members health professionals
• by giving a sound basis for care to individuals

41
Acknowledgements
Members of West Yorkshire HN MDT POG Galina
Velikova, Peter Selby Adam Smith, Alex
Newsham and the PATIENTS Funding - HN Cancer
Fund - British Association of Oral
Maxillofacial Surgeons