1. Health Related Quality of Life in Clinical Practice Sheila E Fisher
Quality of Life in H&N Cancer
5th International Meeting,
Liverpool, 2nd November 2006

2. 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

3. Personal & National evolution
1980s s
Surgical NHS Academic NCRI
Training Consultant Clinician CSG
Calman-Hine DH Cancer King’s Fund
report targets review
Incremental increase in research interest in areas directly relevant to H&N 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, )
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)
Cons
Ward Nurse
OP Nurse
Partner
Patient GP
Comm Nurse 86 92 84 67 10 25 14

5. 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

6. Issues from scoring

7. 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

8. CNS Intervention required
40 patients

9. Acceptability in Clinic
Helped talk to the doctors?
147 responses

10. Patient feedback
Continued use?
147 responses

11. So why do we not use QoL in routine practice?

12. Clinician Results Much more difficult, 39 responses
Helpful or very helpful 18
Interfered with priorities
Recorded additional intervention 1

13. Data
What ?
When ?
To whom ?
In what form ?
What then happens?

14. 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)

15. Overcoming barriers The RIGHT information to
the APPROPRIATE team member at
the RIGHT time
conveying the PATIENT need and
PRESENTED in the best format

16. Design of study
‘Carefully developed and structured questionnaires can be used to improve the quality of life of head and neck cancer patients’

17. Current Work
Use new technology (integrated clinical and clinical trial database)
Use questionnaires in H&N practice, general, H&N specific and psychological measures
Assess patient views on content and wording of questionnaires and individual questions
H&N cancer patients and subgroups

18. Questionnaires Assess opinion: ‘Attitude’ questionnaire
(Detmar et al, JCO, 2000; Velikova et al, JCO, 2004)
General: SF-36v2, EORTC QLQ C30, FACT-G
H&N: EORTC, FACT, UWQoLv4
Psychological: HADS and MHI 5
(Cull et al, BJC, 85, )

19. 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?
Not at A Quite Very
all little a lot
26 (a) How important do you think this question is?
Very Poorly Well Very
poorly well
26 (b) How well written is this question?

20. Concerns & Actuality Data burden Acceptability Technology very
acceptable
102 patients
accrued
150 target

21. 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, patient’s homes etc. ? other networks.

22. Patient Pathway Manager Switchboard

23. Patient Pathway Manager – Patient Browser

24. Patient Pathway Manager – Trial Browser (Trial Information)

25. Patient Pathway Manager – Trial Browser (Patient Study Episode)

29. 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

30. Interim results Patient attitude to Consultation content (122) Item
Not discuss
If doctor mentions
Like to discuss
Symptoms/Side Effects of Treatment
5 (4.1%)
30 (24.6%)
87 (71.3%)
Physical activity
7 (5.7%)
85 (69.7%)
Disease specific limitations
6 (4.9%)
20 (16.4%)
96* (78.7%)
Emotional aspects
18 (14.8%)
28 (23.0%)
76* (62.3%)
Impact on work
36 (29.5%)
68 (55.7%)
Impact on relationships
26 (21.3%)
44 (36.1%)
52 (42.6%)
Impact on appearance
24 (19.7%)
38 (31.1%)
60 (49.2%)

31. Interim results Perceived content of Consultations: 9 items (122) Item
Never
Rarely
Some
times
Often
Almost
Always
Overall health
24 (19.7%)
26 (21.3%)
51 (41.8%)
5 (4.1%)
16 (13.1%)
Symptoms/Side Effects
12 (9.8%)
16 (13.1%)
39 (32.0%)
21 (17.2%)
34 (27.9%)
Physical activity
14 (11.5%)
13 (10.7%)
31 (25.4%)
35 (28.7%)
29 (23.8%)
Specific to disease*
41 (33.6%)
21 (17.2%)
14 (11.5%)
20 (16.4%)
Limitation in work or leisure
18 (14.8%)
12 (9.8%)
33 (27.0%)
28 (23.0%)
Emotional distress*
42 (34.4%)
10 (8.2%)
11 (9.0%)
Relationships with family
58 (47.5%)
25 (20.5%)
7 (5.7%)
Social relationships
52 (42.6%)
30 (24.6%)
Appearance
56 (45.9%)
22 (18.0%)
5 (4.1%)
6 (4.9%)

32. 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
No preference 69
EORTC QLQ C30 11
FACT-G 14
SF-36 15

34. Questionnaire Evaluation
Important
Well written 1 2 3 4
EORTC n
(120) %
2 (1.7)
10 (8.3)
42 (35.0)
66 (55.0)
1 (0.8)
4 (3.3)
73 (60.8)
FACT n
5 (4.1)
37 (30.6)
77 (63.6)
44 (36.4)
70 (57.9)
SF n
(119) %
11 (9.1)
6 (5.0)
49 (40.5)
63 (52.1)

35. H&N Questionnaires Individual question approach
Looking for site specific ratings in view of different cancer journey and challenges
Ceiling effect to date

36. 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?

37. 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

38. 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

39. IPAs Will not: Act as a reproducible benchmark for a service
Assess populations
Assess effectiveness of interventions
Become a psychometrically validated questionnaire

40. 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 H&N MDT
POG Galina Velikova, Peter Selby
Adam Smith, Alex Newsham
and the PATIENTS
Funding:
- H&N Cancer Fund
- British Association of
Oral & Maxillofacial
Surgeons