THE FOLLOWING LECTURE HAS BEEN APPROVED FOR ALL STUDENTS BY BIRMINGHAM CITY UNIVERSITY

1. THE FOLLOWING LECTUREHAS 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

2. 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@uce.ac.uk

3. 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

4. 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

5. 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 • Essentialto provide evidence of impact on patient in terms of • Healthstatus • Health-related quality of life

6. Traditional model of Disease Development Pathogen Disease(pathology) Modifiers Lifestyle Individual susceptibility

7. Biopsychosocial model of Illness Hazard Illness (well-being) Psychosocial Factors Attitudes Behaviour Quality of Life

8. 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

9. 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

10. 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

11. Brain Structure

12. 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 Hodgkin’s

13. 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.

14. 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

15. Vulnerable Sadness Fear Depression Anxiety Panic Isolation Crisis 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

16. Distress Practical problems housing insurance work / 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

17. Distress Physical problems Pain Nausea Fatigue Sleep Getting around Bathing/dressing Breathing Mouth sores Eating Indigestion Constipation 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 13:No 11A: 459-507, 1999.

18. 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

19. Stress of Diagnosis Stressful Uncertainty Shock, anger, disbelief, distress May resolve spontaneously High distress may predict later larger emotional problems

20. Stress of Treatment Stressful Hospital attendance Hospital admission Unpleasant therapy surgery, radiotherapy, chemotherapy Side effects Disfigurement Apparent treatment failure / Treatment lag

21. 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

22. 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

23. 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?

24. QoL Assessments for Cancer Patients Generic Nottingham 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)

25. 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!

26. Stress at End of Treatment Rebound distress - fear of spread or recurrence Ending prolonged relationship with treatment centre Loss Vulnerability Delayed reaction to enormity of it all

27. 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

28. 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

29. 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

30. 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

31. 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

32. 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

33. 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

34. 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

35. 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

36. 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).

37. 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

38. 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)

39. 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

40. 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

41. 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

42. Risk Factors for Oral Cancer Cigarette smoking *Alcohol abuse * Chewing tobacco * Chewing of betal nuts * Industrial chemical agents * Leukoplakia Erythroplakia * Behavioural

43. 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” ?

44. 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 Survival rates affected by personality ?

45. 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