Psychological aspects of CANCER

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Psychological aspects of CANCER

• Professor Lorraine Sherr

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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

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PSYCHOLOGY

• Mental health
• Emotions
• Behaviour

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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

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Behavioural issues

• Smoking
• Diet
• Sexual behaviour
• Sun exposure
• Chemical exposure (Chernobyl, pill)
• Breast self examination
• Screening attendance
• Genetic screening/counselling

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Theories to explain smoking

• Theory of Reasoned action (Fishbein Ajzen)
• Importance of intentions, social norms and
  attitudes not only knowledge

• Stages of change (DiClemente)
• Precontemplation
• Contemplation
• Decision
• Change
• Sustain
• Revert

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CANCER OR CANCERS

• Brief overview of different forms of cancer and
  the relevant psychological factors

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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)

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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

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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).

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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

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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

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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)

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Stages of psychological focus

• Diagnosis
• Treatment
• Outcome
• Evaluation
• Quality of life
• Doctor patient communication
• Bereavement, facing death, grief and loss
• Survival

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Diagnosis

• 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

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The Patient
A. Universal Patient Fears (in newly diagnosed
patients) 6 Ds 1. death 2. dependency (on
family/spouse) 3. disfigurement 4. disability
5. disruption (e.g. relationships) 6.
discomfort (pain)
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B. Variable Course of Illness Uncertainty
1. cure, death, or remission (with or without
relapse) 2. uncertainty gt stress!
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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
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Psychological factors

• 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

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Adjustment to diagnosis

• 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, gt fear of death (Holland
  1990)

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Problems experienced cancer patients

• 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

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Treatment

• Hospital admission
• Fear of treatments
• Surgery - see surgery decision making
• Therapy effects
• Focus on negative psychological reactions - need
  to measure adaptation, resilience and coping

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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

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Radiotherapy

• Fear of radiation
• Effects on partners (Schover and Jenson)
• Cycle of treatments, anticipation and side
  effects
• Depression and anxiety makes it worse

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Overall problems
Diagnosis related Treatment related Quality
of life
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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)

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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 14/13 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

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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

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Use of Q O L

• Indicator of psychological distress
• Aide referral
• Prognostic value - predictive of treatment
  outcomes
• Decision making tool

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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
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Choosing a test to measure quality of life

• 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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Methods of administration

• Face to face interview by trained interviewers
• telephone interviews
• self-report questionnaires
• pencil and paper
• computer - touch screens and so on

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Smith et alAutomatic 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

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Generic or Specific Tests

• 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

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• 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)

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• GHQ
• General Health Questionnaire by David Goldberg
• - well researched, perhaps mot appropriate
  currently

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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

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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

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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

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CRC Psychosocial oncology grp

• 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 gt 4 dr makes accurate assessment 18
• GHQ gt 4 dr makes inaccurate assessment 39
• GHQ lt4 dr makes accurate assessment 33
• GHQ lt4 dr makes inaccurate assessment 10

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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

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Outcomes for Psychological interventions (Fertig
1997)

• Psychological improvements
• mood (anxiety/depression)
• adjustment
• ability to self care
• Physical improvements
• fatigue
• nausea
• Perceived pain
• Compliance/adherence

• Cost offset
• length of hospital stay
• outpatient adherence
• pain medication
• Survival time (?)
• Overall quality of life

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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

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Outcome (Fallowfield Hall Maguire and Baum 1990)
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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

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Terminal illness

• Communication of prognosis
• Adjustment and coping
• Palliative care and coping
• Bereavement
• Familial diagnoses and their implications