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

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 (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) Cons Ward Nurse OP Nurse Partner Patient GP Comm Nurse 86 92 84 67 10 25 14

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

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 40 patients

Acceptability in Clinic Helped talk to the doctors? 147 responses

Patient feedback Continued use? 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

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

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 views on content and wording 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

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%)

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%)

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 11 FACT-G 14 SF-36 15

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-36 n (119) % 11 (9.1) 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 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

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