Title: History and evolution of quality of life in head and neck cancer
1History 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
2Leroy 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.
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4Overview
- Definitions
- Characteristics of QoL
- History of QoL concept
- Evolution of QoL in HNC
- Evolution of studies
- QoL Questionnaires
- Current state
- Future uses
- Summary
5Definitions
6Why 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
7Definitions
- 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
8Mehannas Health related QoL
Reality
Expectation
9Characteristics of QoL Concept
- self-reported
- subjective
- multi-dimensional
- changes over time
10Tenants 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
11History of QoL concept
12Voltaire 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
13Jessett 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.
14Nahum 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.
15Watson 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
16Hippocrates 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
17M.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".
18Ormerod, 1954
- described explaining to a patient what is
entailed in a laryngectomy, including counselling
by a speech therapist and interviews with
previous patients.
19Hospice movement, 1960s
- pioneered by
- Cecily Saunders in Britain, and
- Elizabeth Kubler-Ross in the U.S.A.
20Heckscher 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
21Medline 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
22QoL Questionnaires
23Karnofsky 1948 lung cancer
- Functional status scale
- Subjective Improvement scale
- Three category scale
24Priestman Baum 1976
- 10 item questionnaire
- Breast cancer
- Modern approach to QoL measurement
25HNC 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
26Guidelines on devt of QLQ
Kirshner and Guyatt 1985
27Assessment of validity
28Mehannas Ideal tool
29Current state
30Current state
- Longitudinal studies
- Many (validated) questionnaires
- Routine use of QoL
- Research outcomes
- Clinical outcomes
31Current state
32Longitudinal studies
Morton , 1995,2003, Hammerlid 2001, List 1996,
Terrell 1999, Weymuller 2000, Rogers 1999
33Deterioration in the long-term (10 year) quality
of life of head and neck cancer
survivors Mehanna and Morton, Clin Otol 2006
34Results 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
35Current 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
38HNC Questionnaires
39Lesson 1
- Avoid obscure questionnaires
40Current state
- Longitudinal studies
- Many (validated) questionnaires
- Routine use of QoL
- Research outcomes
- Clinical outcomes?
41QoL 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
42QoL 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
43Impediments 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
44Lesson 2
- K.I.S.S. - Keep it simple for surgeons
45Current 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.
46Better 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
47Lesson 3 Better information needed
48Current uses
- Providing patients with better information on
course of disease and prognosis. - Assessing new and existing treatments and
techniques.
49Assessing 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
50Current 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.
51Patient 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
52The future
53Future uses
- Interpreting quality of life studies
- Improving the consultation and follow-up
- Interventions to improve quality of life and
psychosocial well-being
54Future uses
- Interpreting quality of life studies
55QoL study interpretation
- Current statistical differences
- Need to identify minimum important clinical
differences (MICD) for each questionnaire - Reporting studies needs to improve
56Minimum 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
57Minimum 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
58Future uses
- Interpreting quality of life studies
- Improving the consultation and follow-up
59Improving 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)
60UK 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
62Group 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
63Future 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
64Interventions Screening
- Interventions are the ultimate aim that we strive
for - Screening is an integral part of this
65Summary
- 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?
673rd Masters MDT dissection course in head and
neck operative surgeryCoventry, April 30- May 4
2007
Prof Ashok Shaha, MSKCC
Guest Speakers
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