Health Related Quality of Life in Clinical Practice Sheila E Fisher

Quality of Life in H&N Cancer 5 th International Meeting, Liverpool, 2 nd November 2006

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

Personal & National evolution

1980s 1990s 2000 2003 Surgical NHS Academic NCRI Training Consultant Clinician CSG 1995 2004 2006 Calman Hine DH Cancer King’s Fund report targets review Incremental increase in research interest in areas directly relevant to H&N practice

Early Studies

• Patient support: % rating of ‘very helpful’ support on 0-5 Likert scale Cons 86 Ward Nurse 92 OP Nurse 84 Partner 67 Patient 10 GP 25 Comm Nurse 14

(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)

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

Issues from scoring

100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0% pa ap in pe ar an ce ac tiv ity re cr ea tio n sw al lo w in g ch ew in g ea tin g sp ee ch sh ou ld er ta st e sa st liv ic a ky m uc us na ly us m ea ph oe de m a satisfactory problem

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

CNS Intervention required

trismus 8% benefits advice 8% smoking cessation 24% anxiety +/or depression 44% sexuality/image 8% social 8% 40 patients

Acceptability in Clinic

Helped talk to the doctors?

NO ANSWER 36% YES 57% NO 7%

147 responses

NO ANSWER 24%

Patient feedback

Continued use?

YES 70% NO 6%

147 responses

So why do we not use QoL in routine practice?

Clinician Results

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

• What ?

• When ?

• To whom ?

• In what form ?

• What then happens?

Data

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)

Overcoming barriers

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

Design of study

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

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 wording views on content and of questionnaires and individual questions • H&N cancer patients and subgroups

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, 1842-1849)

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

Concerns & Actuality

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

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.

Patient Pathway Manager Switchboard

Patient Pathway Manager – Patient Browser

Patient Pathway Manager – Trial Browser (Trial Information)

Patient Pathway Manager – Trial Browser (Patient Study Episode)

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

Item

Interim results

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

Interim results

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

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?

Choice of Questionnaire

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

Questionnaire Evaluation

Important 1 2 EORTC n (120) % 2 (1.7) 10 (8.3) 3 4 42 (35.0) 66 (55.0) Well written 1 2 1 (0.8) 4 (3.3) 3 4 42 (35.0) 73 (60.8) FACT n (120) % 1 (0.8) 5 (4.1) 37 (30.6) 77 (63.6) 1 (0.8) 5 (4.1) 44 (36.4) 70 (57.9) SF-36 n (119) % 1 (0.8) 11 (9.1) 37 (30.6) 70 (57.9) 1 (0.8) 6 (5.0) 49 (40.5) 63 (52.1)

H&N Questionnaires

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

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?

IPAs

• • •

I

ndividual

P

atient

E

valuation &

G

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

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

IPAs

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

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

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