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
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.”
Overview
Definitions
Characteristics of QoL
History of QoL concept
Evolution of QoL in HNC
Evolution of studies
QoL Questionnaires
Current state
Future uses
Summary
Definitions
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
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
Mehanna’s Health related QoL
Reality
Expectation
Characteristics of QoL Concept
•
•
•
•
self-reported
subjective
multi-dimensional
changes over time
Health-related QoL =
one’s personal, subjective assessment of general
well-being which can be regarded as a composite
scale involving many contributing domains.
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
History of QoL concept
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’
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.”
Nahum and Golden 1963
‘Since the common tendency of the
physician and family is to be
sympathetic toward the postlaryngectomy patient, it is often
necessary to lean a bit in the opposite
direction and to deal with the situation
lightly’.’
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’
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
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".
Ormerod, 1954
described explaining to a patient what is
entailed in a laryngectomy, including
counselling by a speech therapist and
interviews with previous patients.
Hospice movement, 1960s
pioneered by :
Cecily Saunders in Britain, and
Elizabeth Kubler-Ross in the U.S.A.
Heckscher 1960
Essay to Dwight Eisenhower’s
Commission on National Goals
‘…a society which puts a value on the
quality of its national life will want to act
resolutely…’
Medline keyword 1977
•
•
•
•
•
•
•
1978-80
1987
1993
1996
1999
2002
2005
200 papers
400 papers
1,255 papers
3,130 papers
4,564 papers
6,288 papers
9,450 papers
QoL Questionnaires
Karnofsky 1948 lung cancer
• Functional status scale
• Subjective Improvement scale
– Three category scale
Priestman & Baum 1976
• 10 item questionnaire
• Breast cancer
Modern approach to QoL measurement
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
Guidelines on devt of QLQ
1. Decide the Hypothesis to be tested
2. Decide on definition of Quality-of-life to be used
3. Disease-specific questionnaire to include:
Disease- and Treatment-related symptom
scores;
Health- and Disease-status
a. Patient data to be self-reported
b. Enquiry on domains of functional status to
include:
Psychological functioning
Socio-sexual functioning
Physical functioning
Global QL measure (patient-generated)
4. Field testing and fine-tuning of questionnaire
5. Instruments should have proven, or be checked for:
Reliability
Validity
Responsiveness/Sensitivity
6. Design longitudinal study
Kirshner and Guyatt 1985
Assessment of validity
Psychometric
criterion
Biomedical terminology
meaning
Content validity
Comprehensiveness
Questions cover relevant issues
Face validity
Credibility
Questions are clear
Criterion validity
Accuracy
Performance of instrument in
comparison to a ‘gold
standard’
Discriminant validity
Responsiveness
Ability and sensitivity to detect
change.
Construct validity
Biological sense
Ability of instrument to behave
in a fashion consistent with a
theoretical framework
Reliability
Reproducibility
Ability to produce similar results
on retesting
Mehanna’s Ideal tool
Current state
Current state
• Longitudinal studies
• Many (validated) questionnaires
• Routine use of QoL
– Research outcomes
– Clinical outcomes
Current state
• Longitudinal studies
36
24
12
6
3
80
75
70
65
60
55
50
45
40
di
ag
no
si
s
relative QoL units
Longitudinal studies
time from diagnosis (mnths)
Morton , 1995,2003, Hammerlid 2001, List 1996, Terrell 1999, Weymuller 2000, Rogers 1999
Deterioration in the long-term (10 year) quality of life
of head and neck cancer survivors
Mehanna and Morton, Clin Otol 2006
Results : Long-term QL
Mehanna and Morton 2006
Life Satisfaction Score
10 yr survivors
65
n = 200
Full cohort
60
“something happened”
p < 0.001
55
n:
184
n:
124
1y
2y
n: 43
0
3m
10y
Current state
• Longitudinal studies
• Many (validated) questionnaires
"choosing an instrument is an exercise in
trade offs"
Moinpour et al ,1989
“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
HNC Questionnaires
EORTC
QLQ C30/
H&N35
UWQOL
FACT
G/H&N
QLH&N
QLQ
QLRTI/HN
HN
QOL
HN
RQ
both
S
both
both
S
both
S
S
Validated
+
+
+
+/-
+/-
+/-
+/-
+/-
No of items
65
12
27
29
19
39
21
22
No of domains
6
9
4
3
4
5
4
6
Self -administer
+
+
+
+
+
+
-
-
Global measure
+
+
-
+
-
+
+
-
Summary score
-
+
+
-
?
+
-
+
Cross-cultural
validation /
translation
+
Several
languages
-
+/ongoing
-
-
+/Japanese,
German,
Spanish
-
-
B
B
B
?
?
B
B
short
5
15
?
?
11
10
General (G) or
specific (S)
Scoring
Time to complete
C30- B
HN35-W
18
Lesson 1
Avoid obscure questionnaires
Current state
• Longitudinal studies
• Many (validated) questionnaires
• Routine use of QoL
– Research outcomes
– Clinical outcomes?
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
QoL use in Australasia
34% had ever used QLQ
Physicians > surgeons: clinical trials
13% current users
only 1.5% routine clinical practice
Mehanna and Morton, JLO, 2006
Impediments to use
• Time consuming/
lack resource
• No clinical value
• Don’t know how to
use info
• Patient don’t like it
Aus-NZ
34%
UK
57%
34%
11%
16%
13%
7%
10%
Most are clinician based reasons
Lesson 2
K.I.S.S. - Keep it simple for
surgeons
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.
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
Lesson 3: Better information
needed
Current uses
• Providing patients with better
information on course of disease and
prognosis.
• Assessing new and existing treatments
and techniques.
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
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.
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
The future
Future uses
• Interpreting quality of life studies
• Improving the consultation and followup
• Interventions to improve quality of life
and psychosocial well-being
Future uses
• Interpreting quality of life studies
QoL study interpretation
• Current : statistical differences
• Need to identify minimum important
clinical differences (MICD) for each
questionnaire
• Reporting studies needs to improve
Minimum Important Clinical
Difference
• If after intervention A, QoL score changed
from 20 to 25 ( p=0.01)
• Statistically significant
• But in MICD =10 points…this is intervention is
unlikely to be useful
Piccirillo, 2006
Minimum Important Clinical
Difference
• If after intervention A, mean QoL score change= 5 ( p=0.01),
95%CI 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
Future uses
• Interpreting quality of life studies
• Improving the consultation and
follow-up
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)
UK Head Neck QoL Collaboration
(HN-QoL)
• 15 researchers – 7 universities
• QoL-driven HNC clinic
– concentrating on follow-up
Study 1A
Patient
preferences of
QLQs
Phase
1
Study 1B
clinician
preferences of
QLQs
Decision
on QLQ
Study 3
consultation
factors BME
Phase
2
Phase 3
Study 2 consultation
factors
Study 4
computerised
QLQ
Generation of the QoL
driven cancer clinic model
Study 5: Piloting the model
Nurse versus doctor - led
Paper versus IT based questionnaire
Future research programme:
assessing interventions in the clinical setting to improve
QoL
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
Future uses
• Interpreting quality of life studies
• Improving the consultation and followup
• Interventions to improve quality of
life and psychosocial well-being
– Screening for problems
Interventions & Screening
• Interventions are the
ultimate aim that we
strive for
• Screening is an
integral part of this
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.
?
3rd Masters MDT dissection course in
head and neck operative surgery
Coventry, April 30- May 4 2007
Guest Speakers
Prof Ashok Shaha, MSKCC
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