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Psychological aspects of CANCER

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

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Psychological aspects of CANCER

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  1. Psychological aspects of CANCER Professor Lorraine Sherr

  2. 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

  3. PSYCHOLOGY • Mental health • Emotions • Behaviour

  4. 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

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

  6. 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 Theories to explain smoking

  7. CANCER OR CANCERS • Brief overview of different forms of cancer and the relevant psychological factors

  8. 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) Lung Cancer

  9. 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 Skin Cancers

  10. 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). Bowel Cancer

  11. 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 Gynaecological Cancers

  12. 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 Psychological aspects of Diagnosis

  13. 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) Array of problems associated with Cancer diagnosis

  14. Stages of psychological focus • Diagnosis • Treatment • Outcome • Evaluation • Quality of life • Doctor patient communication • Bereavement, facing death, grief and loss • Survival

  15. 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

  16. 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)

  17. B. Variable Course of Illness & Uncertainty 1. cure, death, or remission (with or without relapse) 2. uncertainty ==> stress!

  18. 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

  19. 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

  20. 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, > fear of death (Holland 1990)

  21. 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 Problems experienced cancer patients

  22. 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

  23. 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

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

  25. Overall problems Diagnosis related Treatment related Quality of life

  26. 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) Why doctors do not measure Quality of Life (Fallowfield)

  27. 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 Quality of life assessment can:-

  28. 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

  29. Use of Q O L • Indicator of psychological distress • Aide referral • Prognostic value - predictive of treatment outcomes • Decision making tool

  30. 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

  31. 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?

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

  33. 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

  34. 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

  35. 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)

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

  37. 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

  38. 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

  39. 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

  40. 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 > 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%

  41. 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

  42. 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 Outcomes for Psychological interventions (Fertig 1997)

  43. 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

  44. Outcome (Fallowfield Hall Maguire and Baum 1990)

  45. 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 Psychological outcomes

  46. Terminal illness Communication of prognosis Adjustment and coping Palliative care and coping Bereavement Familial diagnoses and their implications

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