Transcript QUALITY OF LIFE - CANCER - University College London

Psychological aspects of
CANCER
Professor Lorraine Sherr
Incidence
• 1 in 3 will develop cancer
• Quarter of a million cancer diagnosis per
annum in the UK
• Breast cancer - 25,000 new cases per annum
• Breast cancer - 15,000 die per annum
• Yet 46% of women and 35% of men with
cancer will be alive 5 years after diagnosis
PSYCHOLOGY
• Mental health
• Emotions
• Behaviour
4 Areas will be discussed
• BEHAVIOURAL ISSUES LEADING TO
PREVENTING OR DETECTING
CANCER,
• PSYCHOLOGICAL ASPECTS OF
DIAGNOSIS
• PSYCHOLOGICAL ASPECTS OF
TREATMENT
• PSYCHOLOGICAL ASPECTS OF
ILLNESS
Behavioural issues
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Smoking
Diet
Sexual behaviour
Sun exposure
Chemical exposure (Chernobyl, pill)
Breast self examination
Screening attendance
Genetic screening/counselling
Theories to explain smoking
• Theory of Reasoned
action (Fishbein
Ajzen)
– Importance of
intentions, social
norms and attitudes not
only knowledge
• Stages of change
(DiClemente)
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Precontemplation
Contemplation
Decision
Change
Sustain
Revert
CANCER OR CANCERS
• Brief overview of different forms of cancer
and the relevant psychological factors
Lung Cancer
• Behavioural factors:
• Smoking
– Bartecchi et al (1994)
assert that cigarette
smoking related to
85% of lung cancers
– Smoking cessation
improves prognosis
– Gas and environmental
smoke exposure
(Ennever 1990)
• Psychological distress
high (Sarna 1993)
• Emotional support
mitigates and may
prolong survival (Ell
et al 1988, 1992)
Skin Cancers
• Melanomas and non
melanomas
• Incidence increasing
• Reduce exposure to
UV
• Hill et al (1992)
provides community
and gender behaviour
on avoidance and
screen use
• Community awareness
leads to behaviour
change and early
detection
Bowel Cancer
• Diagnosis and
investigative
procedures are
difficult
• Patients report
discomfort, fear,
embarrassment and
pain
• Screening is possible
for early detection, but
not widely
implemented yet
• After-effects of
surgery affect
psychological
adaptation
(psychosexual
problems, depression
and isolation).
Gynaecological Cancers
• Ovarian, endometrial,
cervical, vulval,
vaginal, uterine, breast
• Role of screening (Pap
smears) or
mammography
• Delay in detection
• Screening attendance
• High psychological
burden of positive
smear results.
Psychological
preparation
• Individual differences
• Coping styles
Psychological aspects of
Diagnosis
• Challenging generates
“existential plight” on
diagnosis but even on
early medical
screening or just
contemplating
possibility.
• Withholding diagnosis
is seen as problematic
• Interventions to
enhance adjustment
and coping reactions
are shown to be
effective
• Challenging treatment/
process and side
effects
• Decision making and
treatment choice
Array of problems associated
with Cancer diagnosis
Knowledge of Disease
• life threatening
• inadequate information
• prognosis uncertainty
• guilt about causality
• stigma
• fears of pain
• fears of undignified
death
Coping with treatment
• Mutilating surgery
• Loss of body image
• Loss of self esteem
• Rejection by partner
• Radiotherapy (depression,
nausea, lethargy, skin irradiation)
• Chemotherapy (Nausea and
vomiting, alopecia, mouth ulcers,
leucopenia, cardio toxicity, hirsutism,
hot flushes)
Stages of psychological focus
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Diagnosis
Treatment
Outcome
Evaluation
Quality of life
Doctor patient communication
Bereavement, facing death, grief and loss
Survival
Diagnosis
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Screening
Breaking bad news
Timing and waiting for results
Seeking out help
Social support
Coping
Decision making around treatment
Diagnosis of subsequent recurrence and/or
metastatic disease
The Patient
A. Universal Patient Fears (in newly diagnosed patients);
“6 D’s”
1. death
2. dependency (on family/spouse)
3. disfigurement
4. disability
5. disruption (e.g. relationships)
6. discomfort (pain)
B. Variable Course of Illness &
Uncertainty
1. cure, death, or remission (with or without relapse)
2. uncertainty ==> stress!
C. Cancer & Psychiatric Disorders
1. most patients cope well with chronic stress &
uncertainty with disease
2. 1st relapse = most psychologically stressful (vs. initial
diagnosis or end stages of life)
D. Life with Cancer
1. most difficult symptoms: nausea & fatigue
2. pain = most feared symptom
3. desire for patient support group
a) survivor guilt – for patients in remission
Psychological factors
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Recall
Information processing under stress
Associations and meanings of Cancer
Fear - Stevens et al 1987
Anxiety Baum et al 1994
Anxiety and threat related to delayed
treatment seeking (Gutteling et al 1987)
• Coping
Adjustment to diagnosis
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Coping style and strategies
Health beliefs
Pre-diagnosis psychological well being
Importance of social support (Levy 1992)
Anxiety about future (self-examination)
Fallowfield & Clark 1990
• Recurrence associated with high psychological
morbidity (Hall Fallowfield et al 1995)
• Fear of dying, pain, > fear of death (Holland 1990)
Problems experienced cancer patients
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Knowledge of the diagnosis
Inadequacy of information
Uncertainty about prognosis
guilt about causality
stigma of cancer
fear of a painful and undignified death
worries about reaction of family and friends
surgery often mutilating and can cause body
image problems and loss of physical/sexual
function
• Chemotherapy/ radiotherapy
Treatment
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Hospital admission
Fear of treatments
Surgery - see surgery decision making
Therapy effects
Focus on negative psychological reactions need to measure adaptation, resilience and
coping
THERAPY AND DECISION
MAKING
• Systemic therapy (chemotherapy and
endocrine therapy)
• Decrease sexual desire (Silerfarab et al 1980)
• Affect body image (Falllowfield & Clark 1990)
• Ovarian ablation induces early menopause
(see young women)
• Endocrine therapies induce menopausal
symptoms
Radiotherapy
• Fear of radiation
• Effects on partners (Schover and Jenson)
• Cycle of treatments, anticipation and side
effects
• Depression and anxiety makes it worse
Overall problems
Diagnosis related
Treatment related
Quality of life
Why doctors do not measure
Quality of Life (Fallowfield)
• They feel that clinical
judgement is sufficient
• Do not know which
tests to use
• Feel it takes too much
time
• Think that the patient
will get upset
• Do not know how to
analyse tests
• Do not know how to
interpret data
Charing Cross Hospital
Study - only 1.6
consultants behaved
above chance level of
being able to assess if
patient was depressed)
Quality of life assessment can:• Provide data to assist
patent and doctor with
decision making about
treatments
• Help evaluate outcome of
different treatments in
outcome trials
• Identify patients who
might benefit from
supportive interventions
• At any given time 1:4/1:3
cancer patients experience
clinical anxiety
• To be used to inform
policy and resource
allocation
• Reveal benefits to patients
despite objective toxicity
• be of prognostic value in
determining which patient
is most likely to benefit
from treatment
Prietman and Baum (1978)
• Quality of life is the best predictor of
prognosis in many cases, as opposed to
tumour size, reductions etc.
• Studies are numerous on this point
Use of Q O L
• Indicator of psychological distress
• Aide referral
• Prognostic value - predictive of treatment
outcomes
• Decision making tool
Quality of Life
Core Domains
• Psychological
• Social
• Occupational
• Physical
Typical items
• Depression/Anxiety/
Adjustment to illness
• Personal relationships,
sexual interest, social
& leisure activities
• Employment, cope
household
• Pain/mobility/sleep/
sexual functioning
Note order of domains; doctors tend to emphasize physical
Choosing a test to measure
quality of life
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Generic or specific test
Index or profile
Single instrument or battery?
Is it suitable for target population
Is it psychometrically sound?
Which response format is used?
What is the time frame?
Method of administration
Who will complete assessment?
Methods of administration
• Face to face interview by trained
interviewers
• telephone interviews
• self-report questionnaires
• pencil and paper
• computer - touch screens and so on
Smith et al
Automatic screening and recording
• Patients preferred touch screen to paper
• Touch screen was quicker
• Computers could be used in clinics to
provide information to both doctors and
patients
• Future depends on resources, technology,
convincing the sceptical
Generic or Specific Tests
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Generic (across any disease state)
Nottingham Health Profile NHP
Sickness Impact Profile (SIP
Medical Outcomes Survey (MOS SF36)
Specific
Function eg State/Trait Anxiety Inventory (STAI)
Population eg Paediatric Functional Independence
Measure
– Disease eg Arthritis Impact Measurement Scale
AIMS
SIP
- 136 items, 12 different
categories of
functional behaviour
(Bergner, Bebbit &
Carter 1981) eg
mobility, work, eating,
sleep, rest
SF-36
- Brief, comprehensive
self report
questionnaire
- 36 items
- 8 subscales (health
concepts)
Ware & Sherbourne
(1992)
GHQ
General Health Questionnaire by David Goldberg
- well researched, perhaps mot appropriate
currently
Who should measure Q of Life?
Slevin et al 1988
• Method 108 patients and their doctors,
nurses and relatives using a number of Q of
L tests
• Results. Poor correlation between groups.
Wide variability between doctors in scores
• Conclusion: If measurement is different
then patient (not others) should fill out
measure
Saunders & Fallowfield 1996 Survey of
Breast Cancer Specialist attitudes to
Q o L measures in UK
• Method: Postal survey of 58 specialists
(78% response rate)
• Results: Low familiarity with tests
• Thought quality of life could be assessed
informally
Choice
• Choice surgeons - talk more, communicate
better, increase satisfaction
• Subsequent studies have focussed on
surgeon and found significant effect
• Taken further to show that communication
training impacts on satisfaction, depression
and anxiety
CRC Psychosocial oncology grp
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1600 patiens (36% male, 64% female)
64 different types of cancer
GHQ (Goldberg) for psychiatric morbidity
Mean score 3.2. Above 4 indicates distress.
36% (569) scored above 4 (distressed cases)
Higher GHQ correlated with Dr ability to detect distress
GHQ > 4 dr makes accurate assessment
18%
GHQ > 4 dr makes inaccurate assessment
39%
GHQ <4 dr makes accurate assessment
33%
GHQ <4 dr makes inaccurate assessment
10%
Overall
• Drs only accurate 51% of the time
• Strong tendency to score not distressed
(72% of the time)
• Only 32% of those patients who scored
above 4 were detected
• Rechecking after consultation did not
improve doctor perceptions
Outcomes for Psychological
interventions (Fertig 1997)
• Psychological
improvements
– mood (anxiety/depression)
– adjustment
– ability to self care
• Physical improvements
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fatigue
nausea
Perceived pain
Compliance/adherence
• Cost offset
– length of hospital
stay
– outpatient
adherence
– pain medication
• Survival time (?)
• Overall quality of
life
Surgical interventions
(see breast cancer particularly)
• Lumpectomy or mastectomy
• see series of studies by Baum Fallowfield
and colleagues
Fallowfield Hall May and Baum - 3 groups of surgeons
Mastectomy 1st choice;
lumpectomy 1st choice;
choice to patient
50% choice had no choice in reality
Outcome (Fallowfield Hall Maguire and Baum 1990)
1.2
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0.8
Depression
Anxiety
0.55 0.57
0.6
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0.22
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Mastectomy
Lumpectomy
Choice
Psychological outcomes
• Recovery and longer
term survival
• Target patients and
family
• Recurrence/death
• Emotional turmoil
• Futility of treatment
• Exhausted treatment
options
• Facing death
• Farewells
• Process of dying
• Pain and palliative
care
Terminal illness
Communication of prognosis
Adjustment and coping
Palliative care and coping
Bereavement
Familial diagnoses and their
implications