Supportive Care in Victoria Cathie Pigott Project Manager Supportive Cancer Care Victoria Project

1. Supportive Care in Victoria Cathie Pigott Project Manager Supportive Cancer Care Victoria Project University of Melbourne

2. Objectives • Define Supportive Care • Understand the implications of the VCAP targets for supportive care • Describe screening vs assessment • Discuss the Distress Thermometer (DT) • Develop confidence to implement DT • Consider project plan for implementation of DT

3. Supportive Care • Supportive care is an umbrella term • Includes services for those with cancer, their family and carers • Refers to the domains • physical • social • information • spiritual • psychological needs “Providing optimal cancer care Supportive care policy for Victoria” Metropolitan Health and Aged Care Services Division, Victorian Government Department of Human Services, Melbourne

4. Create Better Experiences for Cancer Patients and Carers • 4 Strategic Directions in the • Supportive Care Policy • Identifying supportive care needs of people affected by cancer • Building capacity for optimal supportive care • Implementing supportive care screening into routine practice • Addressing supportive care needs – referral and linkages

5. VCAP Targets for Supportive Care • Action area 4: Supporting and empowering patients and their carers throughout their cancer journey • Increasing the number of patients assessed and treated by specialist multidisciplinary teams • Increasing consumer participation in the development of cancer care policies as well as in cancer service delivery and research • Establishing a new state-wide service for adolescents and young adults, and a program to manage the long-term effects of treatment for survivors of childhood cancer • Expanding palliative care services to give patients and carers real choice about end-of-life care.

6. A Model of Supportive Care Adapted from M Fitch 2000

7. People affected by cancer • Not all patients have the same level of need • People will vary with respect to their: • Responses to the demands of having cancer • Capacity to articulate their supportive care needs • Ability to self manage the demands of having cancer • Desire to access services to meet supportive care needs

8. VCAP Screening Target • We will document supportive care screening for 50 % of newly diagnosed cancer patients by 2012

9. Evidence based strategies to respond to identified needs • Do we know how to respond to all unmet needs in ways that influence outcomes? • Is best evidence being used in practice? • Does unmet need data drive our service development? • Does population data on unmet needs help us to: • Define the workforce training needs • Refine a research agenda in supportive care

10. Opportunities • To develop an evidence based state-wide approach to professional development for provision of supportive care services • VCAP target: by 2012 we will provide evidence of training of the cancer workforce in supportive care screening processes and survivorship awareness

11. Workforce approaches that make best use of human resources • In the context of workforce shortages and a growing cancer burden: • What skill mix is needed? • Who needs what competencies in supportive care? • What models of interdisciplinary teamwork best fit cancer?

12. All – involved in supportive care screening, provide an immediate response and make referrals • Many – provide cancer specific supportive care assessment and support as part of the MDT • Some – provide cancer supportive care interventions • Few – provide specialist cancer supportive care interventions.

14. Feedback

15. What is it like to have cancer? Divide into three groups: All groups: Having cancer is like……….. Group 1: What are the major issues faced by patients with cancer? Group 2: What factors are associated with an increased risk of supportive care issues? i.e. who is most at risk? Group 3: What are the factors/barriers that influence the provision of supportive care?

16. Emotional and social issues: Emotional responses Psychological vulnerability/ emotional and social support Psychological issues: Self concept, body image, sexuality Interpersonal problems New relationships post diagnosis Stress and adjustment reactions Severe emotional distress Anxiety Depression Suicide Post traumatic stress disorder What are the major issues faced by the patient with cancer?

17. Physical issues: Treatment side effects Pain Fatigue Fertility issues Disfigurement Odour Incontinence Bowel problems Cognitive problems Nutritional issues Weight changes Respiratory symptoms General health condition What are the major issues faced by the patient with cancer?

18. What are the major issues faced by the patient with cancer? • Practical and financial issues • Costs • Travel and accommodation • Loss of income • Difficulties with business dealings • Spiritual issues • Making meaning • Experience of hopelessness / helplessness • Guilt • Fear • Impact on family/caregivers

19. What are the major issues faced by the patient with cancer? • Survival issues • Issues requiring special consideration • Culture • Age • Geography • Sexual orientation

20. Factors associated with increased risk Characteristics of the individual Younger patients (<30) who may be particularly vulnerable to emotional distress Older patients who may face difficulties associated with co-morbid conditions such as heart disease, arthritis or waning mental capacity Patients who are already the carer of someone else From a culturally and linguistically diverse background Single, separated, divorced, widowed, living alone (NHMRC, 2003)

21. Factors associated with increased risk Characteristics of the individual • Facing economic adversity • Perceived poor social support • Poor marital or family functioning • History of psychiatric problems • Cumulative stressful life events • Past history of alcohol or other substance misuse • If the person has children <21 years • Living in a rural area (NHMRC, 2003)

22. Factors associated with increased risk Characteristics/stages of the disease or treatment At the time of diagnosis and recurrence • During advanced stage of the disease • At the end of treatment • More treatment side effects, functional impairment • Experiencing chronic pain or fatigue • More complex treatment regimes (NHMRC, 2003)

23. Knowledge Beliefs and attitudes Values Self efficacy Time Assessment skills and systems Interview skills Reminders Resources Role definition Support systems for health professionals Feedback Rewards Negative consequences Factors/barriers that influence the provision of supportive care Non identification of supportive care needs may be due to the reluctance by patients to initiate discussion about their supportive care needs and health clinicians failing to ask

24. Screening versus Assessment • Screening is not the same as assessment • Screening should be: • Low cost and complexity • Easy to administer • Available to all • Sensitive to identification of needs

25. Screening Tools • Many tools are available but many have been designed for research purposes • There is ‘no one best tool’ • A tool specifically created for the screening of cancer patients within a clinical context is the Distress Thermometer (DT)

26. Screening Screening Regardless of the tool used, screening must ALWAYS be accompanied by a discussion with the patient about their needs to: • Clarify patient answers on the tool and eliminate any misunderstandings • Prioritization of issues for those with many • Check that patients with no identified needs do not have additional/unreported issues • Discussion of appropriate referrals and patient readiness to accept referrals

27. Screening Should take into account both disease and demographic risk factors Disease related issues Tumours with poor prognosis Stage of illness Demographic issues Younger patients Lower income Level of social support Psychiatric history

28. The Distress Thermometer • Developed by the NCCN • Identifies patient distress (score ≥4 significant) and a range of supportive care needs • Use regulated – requires permission for use and for any adaption • Validated • Widely used • http://www.nccn.org/professionals/physician_gls/f_guidelines.asp

29. Domains Covered

30. Demographic factors Younger age (X) Gender (X) Single, separated, divorced, widowed or living alone (X) Caring for children or dependent adults (DT) Economic adversity (DT) Poor social support (X) Poor marital/family functioning (DT) Past psychiatric treatment (X) History alcohol/substance abuse (X) Cumulative stressful life events (X) Living in a rural area (X) Identification of risk factors • Disease factors • Advanced disease (X) • Poorer prognosis (X) • More treatment side-effects (DT) • Greater functional impairment (DT) • Greater disease burden (X) • Lymphoedema (DT) • Chronic pain (DT) • Fatigue (DT)

31. Identify your local referral pathways • Compile a list of available supportive care services • May be cancer specific or generalist • Internal resources • External resources (eg community health centres) • External resources compiled by • Victorian Cancer Council Helpline • Service Directory

32. How do I know when I should offer a referral? • Be guided by current evidence-based referral protocols • Adapt protocols to suit local needs (ie consult with local clinicians) • Be guided by not only the patients need – but by what they are ready to accept • Prioritize

35. Future directions • Re-screening • Abbreviated screening tool • Times/criteria for rescreening • May differ between tumour streams

36. Case Studies Meet Jane, a 36 year old female; Newly diagnosed Stage III Ovarian Cancer; Jane is married with two young boys. And think about some of the issues that may come up in a discussion following her completion of the supportive care needs screening tool. http://www.cancerlearning.gov.au/edcan_resources/#/xml/module_3/casestudies/ovarian_cancer/find_the_condition_early/meet_jane.xml

38. Patient discussion points Low - Moderate distress score however number of issues identified Feeling fatigued What is the impact on the person and family life - Is it limiting activities of daily living How long has it been going on Has it become more severe lately What supports / strategies are being used or may be available Have these strategies worked Sleep Does she have difficulty in falling asleep? Does she wake up early and have problems getting back to sleep?

39. Patient discussion points • Concentration • Can she give you an example of how it is a problem • Are her thoughts muddled? • Does she feel mentally hazy? • Did she notice whether the problem may be related to a recent change or event such as starting on a new treatment • May need a mini-mental or referral on to the doctor for review • Eating needs • What is happening • Is it a new problem • Is it related to the treatment • Has she noticed any weight loss • How long has it been going for • What strategies has she tried • Constipation needs • What is happening • Is it a new problem • How has she managed up till now

40. Patient discussion points • Fear, nervousness, sadness and worry, and the ability to have children • how has the diagnosis affected her life and future plans • Are her fears about the disease, treatments, caring for family, self-image, appearance, intimate relationships, prognosis or other things? • What worries her the most? • How has this impacted • What supports / methods has she used in the past and found helpful to cope with stress • If unsure ask her to tell you about a problem she had in the past and how she managed it. • What supports does she have already • Is there someone that she can talk to about her feelings or concerns?

41. Patient discussion points • Work issues • Identify what the financial concerns are at this time? • Has there been a change in her income since she became ill? • Is she the sole/primary bread winner in her family or a two income family • Is she on a fixed income? • Is there anyone available to help with banking and bills? • Is this help consistent and reliable • Risk factors • Young, female, stage III (advanced disease), dependent children, fatigue and death of mother (cumulative stress) • Other concerns • Genetic concerns

42. Patient referrals • Dietitian • Lack of appetite • Constipation • Fatigue • Information • Cancer Council information • Cancer Council Helpline 131120 • Social Worker: • Further psychosocial assessment • Infertility • Care of children • Possible financial impact • Work issues

43. Patient referrals Possible referrals: • Physiotherapy / Occupational Therapy • Fatigue • Genetic counsellor • Discussion of concerns re. genetic inheritance

44. Case Study 2 • Meet Harold, a 75 year old male with lung cancer and has just commenced treatment, chemo and radiotherapy • Harold lives with his son and their dog on a farm • http://www.cancerlearning.gov.au/edcan_resources/#/xml/module_3/casestudies/lung_cancer/during_active_treatment/meet_harold.xml

45. Patient discussion points • Low distress score – what does this mean? • Feeling fatigued • What is the impact on Harold and his ability to go home - Is it limiting activities of daily living • How long has it been going on • Has it become more severe lately • What support / strategies are being used or are available • Have these strategies worked • Sleep • Does he have difficulty in falling asleep? • Does he wake up early and have problems getting back to sleep?

46. Patient discussion points • Eating needs • What is happening • Is it a new problem • Is it related to the treatment • Has he noticed any weight loss • How long has it been going for • What strategies has he tried • Breathlessness • When is he short of breath • Is it a new symptom • What if anything helps relieve the shortness of breath

47. Patient discussion points • Pain • Describe the pain • Where is the pain • Is it a new pain • How severe is the pain • Does the pain move anywhere else • What if anything helps the pain • Is the pain uncontrolled • Transportation / Housing • How might this impact on Harold’s willingness to complete treatment • What is the financial impact of treatment away from home

48. Patient discussion points • Fears and Worry • how has the diagnosis affected his life and future plans. • Are his fears about the disease, treatments, caring for family, self-image, appearance, intimate relationships, prognosis or other things? • What worries him the most? • Does he feel angry or guilty about having lung cancer? • How does he express those feelings? • How has this impacted • What supports / methods has he used in the past and found helpful to cope with stress • If unsure ask him to tell you about a problem he had in the past and how he managed it. • What supports does he have already • Is there someone that he can talk to about his feelings or concerns?

49. Possible Referrals • Information • Cancer Council information • Cancer Council Helpline 131120 • Social Worker/ Psychology: • Further psychosocial assessment • Social Work • Possible financial impact • Transport / housing issues • Dietitian • Lack of appetite • Fatigue

50. Possible Referrals • Physiotherapy / Occupational Therapy • Breathlessness • Fatigue • Pain