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History and evolution of quality of life in head and neck cancer

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'It is hard properly to evaluate human suffering: the blind say they would rather be blind than deaf; ... On maxillary cancer ' ... – PowerPoint PPT presentation

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Title: History and evolution of quality of life in head and neck cancer


1
History and evolution of quality of life in head
and neck cancer
  • Hisham Mehanna
  • Consultant Head Neck Surgeon
  • University Hospitals Coventry Warwickshire
  • Heart of England Foundation Trust, Birmingham
  • Hon Senior Lecturer, Warwick Med School, UK

2
Leroy A Schall, 1954.
  • It is hard properly to evaluate human suffering
  • the blind say they would rather be blind than
    deaf
  • whilst the patient without a voice considers
    himself fortunate that he is neither blind nor
    deaf.

3
(No Transcript)
4
Overview
  • Definitions
  • Characteristics of QoL
  • History of QoL concept
  • Evolution of QoL in HNC
  • Evolution of studies
  • QoL Questionnaires
  • Current state
  • Future uses
  • Summary

5
Definitions
6
Why is QoL important?
  • Impact of HNC on
  • daily functions
  • disfigurement
  • HNC patient requirements over and above other
    cancer pts
  • Several different treatments with equivalent
    survival rates

7
Definitions
  • Health-related Quality of life
  • Gap between where patient is (experience) and
    where they would like to be (expectations)
  • and
  • perceived and actual goals
  • Calman 1987

8
Mehannas Health related QoL
Reality
Expectation
9
Characteristics of QoL Concept
  • self-reported
  • subjective
  • multi-dimensional
  • changes over time

10
Tenants of QoL assessment
  • Global vs component measures
  • Important domains
  • physical function
  • psychological state
  • social interaction
  • somatic sensation / symptoms
  • Generic vs disease specific QoL
  • Domain - specific questionnaires

11
History of QoL concept
12
Voltaire 1694-1761
  • doctors are men who prescribe medicine of which
    they know little,
  • to cure diseases of which they know less,
  • in human beings, of which they know nothing

13
Jessett 1886
  • On maxillary cancer ... the only hope we have
    of permanently benefiting the patient suffering
    from this disease is by free and extensive
    operations, i.e., thoroughly removing the whole
    of the cancerous tissues and getting to healthy
    structures.

14
Nahum and Golden 1963
  • Since the common tendency of the physician and
    family is to be sympathetic toward the
    post-laryngectomy patient, it is often necessary
    to lean a bit in the opposite direction and to
    deal with the situation lightly.

15
Watson 1966 on breast cancer
  • an affliction of an easily disposable
    utilitarian appendage
  • evidence (of psychological trauma) will usually
    have been produced by the enquiry (into QoL)
    rather than disclosed by it. The adoption of a
    casual attitude by the doctor before the
    operation and throughout the follow-up
    examinations will go a long way towards
    eliminating these untoward and unnecessary
    occurrences

16
Hippocrates c. 460-377 BC
  • Some patients though conscious that their
    condition is perilous, recover their health
    simply through their contentment with the
    goodness of the physician

17
M.R. Ewing Hayes Martin, 1952
  • "in deciding the method of treatment we should
    not, in our eagerness to achieve cure, lightly
    disregard the crippling that may result from our
    surgical endeavours".

18
Ormerod, 1954
  • described explaining to a patient what is
    entailed in a laryngectomy, including counselling
    by a speech therapist and interviews with
    previous patients.

19
Hospice movement, 1960s
  • pioneered by
  • Cecily Saunders in Britain, and
  • Elizabeth Kubler-Ross in the U.S.A.

20
Heckscher 1960
  • Essay to Dwight Eisenhowers Commission on
    National Goals
  • a society which puts a value on the quality of
    its national life will want to act resolutely

21
Medline keyword 1977
  • 1978-80 200 papers
  • 1987 400 papers
  • 1993 1,255 papers
  • 1996 3,130 papers
  • 1999 4,564 papers
  • 2002 6,288 papers
  • 2005 9,450 papers

22
QoL Questionnaires
23
Karnofsky 1948 lung cancer
  • Functional status scale
  • Subjective Improvement scale
  • Three category scale

24
Priestman Baum 1976
  • 10 item questionnaire
  • Breast cancer
  • Modern approach to QoL measurement

25
HNC QoL the start
  • Non-validated, unidimensional measures
  • Cross-sectional studies
  • Descriptive then quantitative
  • Pitkin 1953 first study, 61 Lx pts,
    psychosocial
  • 1980s-90s prospective studies, validated
    questionnaires
  • Johnston 1982
  • Browman, 1993 first RCT
  • Hassan Weymuller 1993
  • Morton 1995

26
Guidelines on devt of QLQ
Kirshner and Guyatt 1985
27
Assessment of validity
28
Mehannas Ideal tool
29
Current state
30
Current state
  • Longitudinal studies
  • Many (validated) questionnaires
  • Routine use of QoL
  • Research outcomes
  • Clinical outcomes

31
Current state
  • Longitudinal studies

32
Longitudinal studies
Morton , 1995,2003, Hammerlid 2001, List 1996,
Terrell 1999, Weymuller 2000, Rogers 1999
33
Deterioration in the long-term (10 year) quality
of life of head and neck cancer
survivors Mehanna and Morton, Clin Otol 2006
34
Results Long-term QL
Mehanna and Morton 2006
Life Satisfaction Score
10 yr survivors
65
n 200
Full cohort
60
something happened
p lt 0.001
55
n 124
n 184
n 43
0
3m
1y
2y
10y
35
Current state
  • Longitudinal studies
  • Many (validated) questionnaires

36
  • "choosing an instrument is an exercise in trade
    offs"
  • Moinpour et al ,1989

37
  • Choosing which instrument to use poses a
    challenge for investigators of QOL in head and
    neck cancer...No one instrument is ideal for all
    purposes.
  • Ringash and Bezjak, 2001

38
HNC Questionnaires
39
Lesson 1
  • Avoid obscure questionnaires

40
Current state
  • Longitudinal studies
  • Many (validated) questionnaires
  • Routine use of QoL
  • Research outcomes
  • Clinical outcomes?

41
QoL use in UK
  • 29 BAHNO respondents used quality of life
    questionnaire (QLQ)
  • Major impediments
  • lack of resource and time
  • Kanatas Rogers, Ann R Coll Surg Engl, 2004

42
QoL use in Australasia
  • 34 had ever used QLQ
  • Physicians gt surgeons clinical trials
  • 13 current users
  • only 1.5 routine clinical practice

Mehanna and Morton, JLO, 2006
43
Impediments to use
  • Aus-NZ UK
  • 34 57
  • 34 16
  • 11 13
  • 7 10
  • Time consuming/ lack resource
  • No clinical value
  • Dont know how to use info
  • Patient dont like it

Most are clinician based reasons
44
Lesson 2
  • K.I.S.S. - Keep it simple for surgeons

45
Current uses
  • Providing patients with better information on
    course of disease and prognosis.
  • Assessing new and existing treatments and
    techniques.
  • Weighing up treatment options and aiding patient
    decision making.

46
Better information
  • Most patients want information
  • Semple 2002
  • Better info improves QoL and satisfaction,
    decreases anxiety
  • Most HNC pts want more info from MDT
  • Zeigler, 2004

47
Lesson 3 Better information needed
48
Current uses
  • Providing patients with better information on
    course of disease and prognosis.
  • Assessing new and existing treatments and
    techniques.

49
Assessing techniques
  • New Therapies
  • T2 larynx laser vs RT
  • T3 tonsil tumour surgery vs CRT
  • Techniques
  • Oropharyngeal surgery primary closure better
    swallowing than flap
  • IMRT for parotid sparing - PARSPORT

50
Current uses
  • Providing patients with better information on
    course of disease and prognosis.
  • Assessing new and existing treatments and
    techniques.
  • Weighing up treatment options and aiding patient
    decision making.

51
Patient priorities
  • Patients and clinicians have different priorities
  • Patient priorities for treatment
  • Cure, then
  • Survival, then
  • QoL issues List, 2000
  • BUT priorities very variable between patients

52
The future
53
Future uses
  • Interpreting quality of life studies
  • Improving the consultation and follow-up
  • Interventions to improve quality of life and
    psychosocial well-being

54
Future uses
  • Interpreting quality of life studies

55
QoL study interpretation
  • Current statistical differences
  • Need to identify minimum important clinical
    differences (MICD) for each questionnaire
  • Reporting studies needs to improve

56
Minimum Important Clinical Difference
  • If after intervention A, QoL score changed from
    20 to 25 ( p0.01)
  • Statistically significant
  • But in MICD 10 pointsthis is intervention is
    unlikely to be useful
  • Piccirillo, 2006

57
Minimum Important Clinical Difference
  • If after intervention A, mean QoL score change 5
    ( p0.01), 95CI 1-15
  • And MICD 10 points
  • AND 20 achieved a diff score more than 10
  • THEN this intervention is beneficial to 20 of
    patients
  • i.e. 20 of patients achieving benefit
  • Compare to intervention B in which only 5
    patients achieved clinical benefit ( ie score
    change of more than 10)
  • Piccirillo, 2006

58
Future uses
  • Interpreting quality of life studies
  • Improving the consultation and follow-up

59
Improving consultation
  • Follow-up very variable surveillance oriented
    (Zeigler, 2004)
  • Use of routine HRQoL assessment improves QoL ,
    emotion and communication
    (Velikova, 2004)
  • Use of HRQoL data collection by touch screen
    technology
  • accepted and easy to use by HNC patients
  • (Millsopp 2006, Fisher 2006)

60
UK Head Neck QoL Collaboration(HN-QoL)
  • 15 researchers 7 universities
  • QoL-driven HNC clinic
  • concentrating on follow-up

61
Study 5 Piloting the model Nurse versus doctor
- led Paper versus IT based questionnaire
Phase 3
Future research programme assessing
interventions in the clinical setting to improve
QoL
62
Group members
  • Prof Rob Newell , Bradford HN QoL
  • Dr Cherith Semple, Belfast HN QoL, CNS
  • Dr Galina Velikova, Leeds QoL and Consultation
  • Dr Kaye Radford, Birmingham HN QoL, SLT
  • Dr Sheila Fisher, Leeds HN, QoL
  • Prof Yvonne Carter, Warwick QoL and palliation
  • Prof Mark Johnson, Leicester health ethnicity
    and diversity
  • Dr Ann Adams, Warwick health decision making
  • Dr Jane Kidd, Warwick consultation factors
  • Dr Chris Buckingham, Aston health
    computerisation
  • Mr Raj Sandhu, Warwick HN , surgery
  • Prof Janet Dunn, Warwick clinical trials and
    stats
  • Lucy Ziegler, Bradford HN QoL
  • Dr Teresa Pawlikowska, Warwick patient
    enablement
  • Mr Hisham Mehanna, Warwick HN QoL, surgery

63
Future uses
  • Interpreting quality of life studies
  • Improving the consultation and follow-up
  • Interventions to improve quality of life and
    psychosocial well-being
  • Screening for problems

64
Interventions Screening
  • Interventions are the ultimate aim that we strive
    for
  • Screening is an integral part of this

65
Summary
  • Patients perceptions differ significantly from
    clinicians.
  • QL usually decreases immediately after treatment,
    then gradually increases to pre-treatment levels,
    usually by 12 months.
  • QL measurement should be routine, prospective,
    and long-term using brief, patient-reported,
    validated tools, with both general and disease
    specific modules.
  • QL is an integral part of assessment of outcomes
    in head and neck cancer (HNC).
  • QoL studies need to be reported using MICDs.
  • QL should be incorporated in to the management
    pathway of the patient to help improve patient
    care.
  • More work on use in routine clinical use and on
    interventions needed.

66
?
67
3rd Masters MDT dissection course in head and
neck operative surgeryCoventry, April 30- May 4
2007
Prof Ashok Shaha, MSKCC
Guest Speakers
68
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