THE FOLLOWING LECTURE HAS BEEN APPROVED FOR

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THE FOLLOWING LECTURE HAS BEEN APPROVED FOR ALL
STUDENTS BY BIRMINGHAM CITY UNIVERSITY
This lecture may contain information, ideas,
concepts and discursive anecdotes that may be
thought provoking and challenging
Any issues raised in the lecture may require the
viewer to engage in further thought, insight,
reflection or critical evaluation
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Behavioural aspects of Cancer Dr. Craig
Jackson Senior Lecturer in Health
Psychology School of Health and Policy
Studies Faculty of Health Community Care
University of Central England
craig.jackson_at_uce.ac.uk
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Cancer Lottery of Life? Pragmatic attitude to
cancer No Cure for Cancer - D.Leary Cancer
lurks deep in the sweetest bud
W.Shakespeare Most funding directed at
cure Psychological Behavioural considerations
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• Cancer
• Most feared of diseases
• 190 Cancer types NCI
• Distress in carers, patients, family,
  professionals
• Unpleasant and slow way to die
• Few develop psychiatric illness
• Psychological and Social problems more common
• Pain Nausea Fatigue
• Finances Employment Housing
• Childcare Family Spiritual doubts
• Well-planned care can minimize this

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• Quality of Life
• There is surely a place for research into
  psychological interventions that
• improve quality of life for patients after
  diagnosis or treatment.
• Maybe happiness (or reduced unhappiness) has some
  effect on survival.
• Letter to BMJ, Nov 2002
• Rene Descartes division of body and mind
• Biopsychosocial model reunified body mind
• Studies should incorporate the patient's
  perspective of outcome
• Essential to provide evidence of impact on
  patient in terms of
• Health status
• Health-related quality of life

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Traditional model of Disease Development
Pathogen
Disease (pathology)
Modifiers Lifestyle Individual susceptibility
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Biopsychosocial model of Illness
Hazard
Illness (well-being)
Psychosocial Factors Attitudes Behaviour Quality
of Life
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• Psychological Consequences
• Distress
• Reduced QoL
• Delay seeking help Fear Denial
• Depressed / Anxious
• Increased somatic complaints
• Pain Fatigue Breathlessness
• Adjustment Disorder commonest psychiatric
  diagnosis
• Neuropsychiatric complications
• Increased risk of suicide in early stages

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• Depression
• Response to perceived loss
• Awareness of losses to come bereavement
• Loss of body, family, friends, role, life
• Severe depression X4 likely in cancer patients
• 10-20 of patients

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• Anxiety
• Response to perceived threat
• Apprehension, Worry, Restlessness, Panic
  attacks, Avoidance
• Over-estimate risk of treatment / likelihood of
  poor outcome
• Heighten perception of physical symptoms
• Specific cancers Specific fears
• Head and Neck cancers breathing swallowing
• Develop phobias over treatments e.g.
  chemotherapy

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Brain Structure
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• Neuropsychiatric syndromes
• Brain metastases Delirium, Dementia
• Orig. lung, breast, alimentary tract or
  melanomas
• Produce psych. symptoms before discovery
• Paraneoplastic Syndromes
• Neuropsychiatric problems in absence of
  metastases
• Orig. lung, ovary, breast, stomach, or Hodgkins

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• Neuropsychiatric syndromes
• 61 yr old female
• Frontal headaches for 3 months
• Lethargic and weak
• Difficulty walking
• Diffuse areas of nodular destructive
• lesions
• Consistent with multiple myeloma or
• metastatic disease

• Skeleton is common site for mets from carcinomas
  and occasionally sarcomas
• Lesions may be silent or symptomatic, such as
  pain, swelling, deformity,
• compression of the spinal cord, nerve roots, or
  pathologic fractures.

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• Challenges to cancer patients
• Keep active
• Keep independence
• Coping with treatment side-effects
• Accept cancer
• Maintain positive outlook
• Seek / understanding medical info
• Regulate emotions
• Seek support
• Manage stress

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Distress Distress is an unpleasant emotional
experience of a psychological, social, or
spiritual nature that may interfere with a
patient's ability to cope with cancer and its
treatment. Fear of cancer Fear of
treatment Fear of treatment disfigurement
Not always e.g. Fallowfield 1986Mastectomy
patients no worse than breast conserved
patients in post-op sex life
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Distress Practical problems housing insurance wo
rk / school transport child care Family
problems dealing with partner dealing with
children Emotional problems worry
fears sadness depression
nervousness guilt Spiritual / religious
concerns relating to god loss of faith
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Distress Physical problems Pain Nausea Fatigu
e Sleep Getting around Bathing/dressing Brea
thing Mouth sores Eating Indigestion Constipat
ion Diarrhoea Changes in urination Fevers Skin
dry / itchy Nose dry/congested Tingling in
hands/feet Feeling swollen Sexual Holland, JC
Update NCCN Practice Guidelines for the
Management of Psychosocial Distress. Oncology
13No 11A 459-507, 1999.
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• Vulnerability to Distress
• Closely related to pre-existing vulnerability
• Not related to cancer type
• Occurs at specific points of cancer experience
• Diagnosis
• Treatment
• End of treatment
• Post treatment
• Recurrence
• Terminal disease

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Stress of Diagnosis Stressful Uncertainty Shock,
anger, disbelief, distress May resolve
spontaneously High distress may predict later
larger emotional problems
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Stress of Treatment Stressful Hospital
attendance Hospital admission Unpleasant
therapy surgery, radiotherapy, chemotherapy Side
effects Disfigurement Apparent treatment
failure / Treatment lag
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Stress of Systemic Therapy (chemotherapy and
endocrine therapy) Decrease sexual desire
(Silerfarab et al1980) Effects body image
(Falllowfield Clark 1990) Ovarian ablation
induces early menopause (see young
women) Endocrine therapies induce menopausal
symptoms
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Stress of Radiotherapy Fear of
radiation Effects on partners and family
(Schover and Jenson) Cycle of treatments,
anticipation and side effects Depression and
anxiety makes side-effects worse
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Selecting a QoL Assessment 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?
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QoL Assessments for Cancer Patients Generic Nott
ingham Health Profile (NHP) Sickness Impact
Profile (SIP) Medical Outcomes Survey (MOS
SF36) Specific Functional QoL State Trait
Anxiety Inventory (STAI) Population Paediatric
Functional Independence measure
(PFIM) Disease Arthritis Impact Measurement
Scale (AIMS)
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Why Physicians Ignore QoL Feel that clinical
judgement is sufficient Do not know which tests
to use 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 e.g.Charing Cross Hospital Study
Prietman and Baum (1978) QoL is BEST predictor
of prognosis Better predictor than tumour size!
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Stress at End of Treatment Rebound distress -
fear of spread or recurrence Ending prolonged
relationship with treatment centre Loss Vulnerab
ility Delayed reaction to enormity of it all
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Stress After Treatment Survivors re-order their
life Psychological benefits / Greater
appreciation of life Continuing preoccupation
with loss, illness and avoidance Health
anxiety Fear of reoccurrence Misinterpretation
of physical sensations Reassurance seeking
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Stress of Recurrence Cured patients more
devastated by any recurrence Greater risk of
severe distress Worse than initial
diagnosis Stress of Terminal Disease 40 cancer
patients die Fear of uncontrolled pain, dying,
death, and fate of loved ones Depression
common Worse in those with poorly controlled
physical symptoms
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Risk Factors for Psychiatric Disorder Patient
sources History of psychiatric
disorder Social isolation Dissatisfaction
with medical care Poor coping style Cancer
sources Limitation of activity Disfigurement
Poor prognosis Treatment sources Disfigurement
Isolation Side effects
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• Issues for Planning Care
• Patient / Family understand illness treatment
• Patient / Family understand help available
• Explain symptomatic relief provision
• Patient involvement in care
• Management of treatment plan
• Routine emergency contact arrangements
• Practical everyday help
• Home support
• Involve / Support family and friends

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• Psychological Care for Cancer Patients
• PRIMARY CARE
• Multidisciplinary skills
• Individually agreed collaborative care
• Regular liaison with units / agencies
• Local training
• SPECIALIST UNITS
• Training in psychological aspects
• Regular review of treatment plans
• Understand at risk stages
• Specialist nurses, psychiatrists and
  psychologists
• Self-help methods and specialist agencies

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• Psychological Care for Cancer Patients
• Benefits QoL
• Improve survival (time)
• Psych care delivered in Primary Care
• Staff need skills
• Psychological care overlooked by medical focus
  on treatment
• Good case managers needed
• Active screening for Depression and Anxiety
• Patients can be distressed due to non-cancer
  reasons

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• Treatment
• Information
• Social Support
• Addressing worries
• Managing Anxiety
• Accurate info Symptom details Practical help
• Short-term prescription of anxiolytics
• Managing Depression
• Non-differential management from non-cancer
  patients Discussion
• Empathy Reassurance Practical help CBT for
  persistent Dep

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• Specialist Treatment
• Antidepressant Drugs
• Effective drug treatment of Pain, Nausea,
  Other symptoms
• Problem solving discussions
• Cognitive Behavioural Therapy of psych.
  Complications
• Joint / Family interviews
• Group support / treatment
• CBT to cope with unpleasant treatments
• Persistent / severe distress referred onto
  Psychiatry / Psychology
• Check quality of any non-NHS agency used

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Anxiety Depression Screening How are you
feeling in yourself? Have you ever been troubled
by feeling anxious, nervous or depressed? What
are your main concerns or worries at the
moment? What have you been doing to cope with
these? Has it worked? What effects do you feel
cancer and treatment will have on your life? Is
there anything that would help you cope with
this? Who is helping you at the
moment? Standardised Metrics GHQ HAD BDI
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Cancer-Related Fatigue Can occur in upto 96 of
cancer cases Functional syndrome Can be Acute
or Chronic NOT Chronic Fatigue Syndrome Causes
varied extreme stress, central nervous system
may be affected by the cancer or therapy,
medication (eg tumor necrosis factor decreases
protein stores).
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Managing Cancer-Related Fatigue - Educate on
difference between fatigue and depression -
Possible medical causes of fatigue - Observe
rest and activity patterns during the day and
over time - Engage in attention-restoring
activities - Recognise fatigue that is a side
effect of certain therapies - Participate in
exercise programs that are realistic - Avoid
activities which cause fatigue - Identify
environmental or activity changes that may help
decrease fatigue- Importance of eating enough
food and drinking enough fluids - Physical
therapy may help with nerve or muscle weakness -
Respiratory therapy may help with breathing
problems - Schedule important daily activities
during times of less fatigue- Cancel unimportant
activities that cause stress - To avoid or
change a situation that causes stress - To
observe whether treatments being used to help
fatigue are working
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Stressful Life Events and Breast
Cancer Widespread belief stress causes
cancer Especially Breast Cancer 1701 40
Australian women believe stress causes
cancer Some studies found link between stress
and.... Relapse (Ramirez et al. 1989) Onset of
breast cancer (Chen et al. 1995) Evidence is
contradictory Stressful Life experiences
common 66 of females with lump experienced
difficulty in last 5 years Women diagnosed with
breast cancer no more likely to have stressful
experiences before diagnosis (Protheroe et al.
1999)
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Gulf War 1 and Cancer Legacy Liberation of
Kuwait, 1991 US used 945,000 rounds of depleted
uranium shells Incidence of cancer and
congenital defects in Iraq increased
significantly Rates have doubled since 1991 5
times higher in heavily bombed areas Misan and
Thi-Qar
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Risk Factors for Breast Cancer Female sex
Advanced age Previous history of breast cancer
Family history Nulliparity Benign breast
disease ( Multiple papillomatosis ) Early
menarche Late menopause Irradiation Obesity
Alcohol Contraceptive pill hormone
replacement therapy
Behavioural
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Risk Factors for Colonic Carcenoma Familial
adenomatous polyposis syndrome Hereditary
factors Ulcerative colitis Crohn's colitis
Schistosomal colitis Exposure to radiation
Villous polyps Previous surgery
Ureterocolostomy Diet rich in fat meats
High calorie intake Low dietary calcium
intake Low intake of fermentable fibre
Immunosuppression
Behavioural
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Risk Factors for Oral Cancer Cigarette smoking
Alcohol abuse Chewing tobacco Chewing of
betal nuts Industrial chemical agents
Leukoplakia Erythroplakia
Behavioural
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The Future..... Prognostic Markers Predictive
Markers Behavioural Markers??? Mobile Phone
use Responsibility on sufferer e.g. Lung
cancer Genetic susceptibility Genetic
screening Individual vulnerability to cancer Less
of a lottery more of a lifestyle choice ?
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Summary Indirect behavioural causes of
cancer Direct behavioural causes of cancer Stress
may be an indirect cause of stress Cancer
diagnosis - treatment - afterlife very
distressing Anxiety Depression are natural
responses Neuropsychiatric syndromes from
metastases Fatigue one of biggest side effects of
cancer and treatment Understand reasons for
distress Some distressed more than
others Management and care is multidisciplinary Su
rvival rates affected by personality ?
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Further Reading Barraclough J. Cancer and
emotion a practical guide to psycho-oncology.
3rd ed. Chichester John Wiley, 1998 Burton M,
Watson M. Counselling patients with cancer.
Chichester John Wiley, 1998 Faulkener A,
Maguire P. Talking to cancer patients and their
relatives. Oxford Oxford Medical Publications,
1994 Holland JC. Psycho-oncology. Oxford
Oxford University Press, 1998 Lewis S, Holland
JC. The human side of cancer living with hope,
coping with uncertainty. London Harper Collins,
2000 Scott JT, Entwistle V, Sowden AJ, Watt I.
Recordings or summaries of consultations for
people with cancer. Cochrane Database of
Systematic Reviews. 2001