A bridge without gaps

Transcription

1 A bridge without gaps Goals of Care in AYA and other disparate populations Dr Rachel Hughes Lead Clinician, Western Australian Youth Cancer Service Palliative Care Outreach Physician, Pilbara, Western Australia

2 Acknowledgements

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4 Session Overview: What lessons are learnt from a disparate cohort? AYA oncology do we need ANOTHER specialty?: Who are the AYAs? When cancer and youth health collide WA YOUTH CANCER SERVICE Health During Cancer: AYA are socially and biologically unique Survivorship Incurable disease A model of care for AYA and what have we learnt? Youth Cancer Services Care Coordination Sustainability

5 Edward Morris : History of the London Hospital (3 rd Ed) 1926

6 Menarche & social transitions in high income world The road is long: 30 years 30 years 20 years 20 year222s Menarche Adolescence years years Psychosocial maturation Hunter Hunter gatherers gatherers Hunter gatherers Hunter gatherers Agricultural settlement Agicultural settlement Industrial Revolution Industrial revolution Mid 20 th Mid century 20th Century Present day Present Day AAGluckman, P. D., and M. A. Hanson. "Changing times: the evolution of puberty." Molecular and cellular endocrinology 254 (2006): 26-

7 Social determinants?

8 The adolescent brain: WA YOUTH CANCER SERVICE (Seeman et al., Synapse, 1987) (see also Huttenlocher & Dabholkar, J Comp Neurol,1997 Petanjek et al., PNAS, 2011)

9 (Seeman et al., Synapse, 1987) (see also Huttenlocher & Dabholkar, J Comp Neurol,1997; Petanjek et al., PNAS, 2011) WA YOUTH CANCER SERVICE

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11 Decisions, decisions.

12 Health of Adolescents and Young Adults Adolescents : Health Risks and Solutions WHO (2014) Sexual Health Mental Health Violence Alcohol and Drugs Injuries Nutrition malnutrition and obesity Tobacco Exercise Adolescent Rights WA YOUTH CANCER SERVICE

13 Children Cancers of early growth ALL NHL PNET Wilms Neuroblastoma Retinoblastoma Craniopharyngioma Rhabdomyosarcoma Adolescents and Young Adults Unfavourable cytogenetics and histology Referral pathways and treatment setting Osteosarcoma Ewing sarcoma GCT bone Rhabdomyosarcoma Soft tissue sarcomas Desmoplastic small round cell Oligodendroglioma CNS germ cell tumours Melanoma Hodgkin Ph+ ALL APML AML Testicular Ca Ovarian Ca Colon Ca Hepatic Ca Nasopharyngeal Ca Bronchoalveolar Ca Diagnostic Delay Host biology and pharmacokinetics birth years Adults Cancers of aging Carcinomas Aerodigestive Genitourinary Breast Skin etc

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15 Average Annual Change 5 Yr Survival Average Annual Change 5 Yr Survival A correlation between survival and accrual to clinical trials Soft-Tissue Sarcomas 2.4% 1.2% P= % 1% 0% -1% 0% -1.2% -2.4% -3.6% 0% 10% 20% 30% Accrual % 30% 20% 10% 0% Accrual onto Clinical Trials (%) -2% -3% Age Bleyer et al 2003

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17 Increased toxicity for AYA receiving paediatric protocols? Age is recognised to influence toxicity profiles. Vincristine Neuropathy Observations from the literature: Myelosuppression Treatment related adverse effects and mortality (St Jude) Osteonecrosis (AIEOP-ALL 95, ALL-BFM95) Osteonecrosis Thromboembolic events (DFCI ALL protocols) Tumour lysis Hyperglycemia, Diabetic ketoacidosis Higher infection rates (CCG 2961, CCG2891, AML-PFM 93, AML-PFM 98) Obesity AYA prevalent toxicities: Bone marrow transplantation complications Late effects of treatment Bukowinski : Toxicity of cancer therapy in adolescents and young adults. Wood, W. A., & Lee, S. J. (2011). Malignant hematologic diseases in adolescents and young adults. Blood, 117(22), Seminars in oncology nursing Aug 2015 WA YOUTH CANCER SERVICE

18 Fertility Preservation - female Diagnosis treatment urgency Treatment Type WA YOUTH CANCER SERVICE Patient age Chemotherapy: Alkylating agents Cumulative Effect Radiotherapy: Cranial Whole Body Abdo / pelvic Pre-transplant General medical condition cytopenias coagulopathy Risks of process Hormonal manipulation Anaesthetic Disease contamination of reproductive tissues Stern, C., Conyers, R., Orme, L. M., Barak, S., Agresta, F., & Seymour, J. (2013). Reproductive concerns of children and adolescents with cancer: challenges and potential solutions. Clinical Oncology in Adolescents & Young Adults, 3.

19 Fertility preservation - male WA YOUTH CANCER SERVICE

20 WA YOUTH CANCER SERVICE

21 Symptoms in AYA cancer patients Most common symptoms during treatment Fatigue Sleep-wake disturbances Nausea Anorexia / eating problems Pain Mood disturbance Appearance Changes Is the profile unique? Is the burden different? Should management differ? WA YOUTH CANCER SERVICE Erickson, J. M., MacPherson, C. F., Ameringer, S., Baggott, C., Linder, L., & Stegenga, K. (2013).

22 AYA have many significant years ahead of them. They enter these years with a unique and heavy burden Higher rates obesity and physical morbidity Lower educational achievement Greater levels of social isolation Higher rates of anxiety and depression High prevalence post traumatic stress disorder Significant fear of cancer recurrence OnTrac at Peter Mac : Survivorship Connections WA YOUTH CANCER SERVICE

23 After treatment:young cancer survivors are a high risk medical cohort Higher risk: Cardiovascular toxicity Neurocognitive effects Chronic Diseases obesity, diabetes, hypertension High risk pregnancy Poor general health Recurrent malignancy Second malignancy Premature ovarian failure WA YOUTH CANCER SERVICE

24 After treatment:young cancer survivors are a high risk medical cohort Hodgkins Lymphoma cure rate 95-97% in AYA Thyroid problems 30% Second Malignancy: Breast, lung, thyroid, stomach, bone, soft tissue Haematological malignancy Breast cancer secondary to radiotherapy 15-25x population Cumulative risk 12-17% at 30 years (Horwich, Swerdlow. British journal of cancer (2004) Cardiomyopathies: Radiotherapy, anthracyclines High risk pregnancy Others: WA YOUTH CANCER SERVICE

25 Continuing the transition AYAs occupy the world between child and adulthood. The speed of this process depends on the individual and their circumstance. It is important to balance unachievable goals with goals that can be realised, however short a life may be. Rob George and Finella Craig Palliative Care for Young People with Cancer (2009) Picture:

26 What do young people want from their health care provider?

27 Balancing hope and realism They know what my future will be like. They know how desperate and sad and painful and short my situation is. But without ever being unrealistic or instilling false hope, they somehow contribute to making sure I m not a desperate or sad human being. They tell it how it is, no spin. Then they proceed to assure me that I can still do excellent things and be an excellent person. They encourage me to make my life, shall I say, more potent. And to enjoy everything I have the capacity to enjoy. Jack 21yo YOUTH CANCER SERVICE

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29 Tricky Disease Creative Solutions Palliative chemotherapy Surgery metastectomy, pneumonectomy Stenting Bronchoscopy Embolisation Radiotherapy Pain procedures eg nerve blocks Clinical trials Control of bleeding

30 Did we do a good enough job? Uncontrolled symptoms He had a very difficult hour and a half; the cancer had filled his lungs and his lungs had filled with fluid so he essentially suffocated, and that is not an easy way to die, but that was the way he wanted to die. He wanted to be conscious and he was. As hard as those memories are to be there while he suffered so much, we re so blessed because we were there we were all there

31 A role for consultative youth cancer services: Health Before: Adolescent Health Advocacy Diagnostic delay Referral pathways Sarcoma MDT WA YOUTH CANCER SERVICE Health During: Fertility Preservation Psychosocial support Symptomatology Care coordination Clinical trial access Incurable Illness GP communication Health Beyond: End of treatment Late Effects Surveillance Chronic disease Transition Palliative Care

32 Sustainable services Educated champions are the best advocates

33 Sustainable services Consultation with your cohort

34 Sustainable services Don t be modest demonstrate your work

35 YOUTH CANCER SERVICE Acknowledgments

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37 1.Palmer, S., & Thomas, D. (2008). A practice framework for working with year-old cancer patients treated within the adult health sector. Melbourne: ontrac@petermac: Victorian Adolescent & Young Adult Cancer Service. 2.Jones, B. L. (2008). Promoting healthy development among survivors of adolescent cancer. Fam Community Health, 31 Suppl 1, S Langeveld, N. E., Stam, H., Grootenhuis, M. A., & Last, B. F. (2002). Quality of life in young adult survivors of childhood cancer. Support Care Cancer, 10, Shama, W., & Lucchetta, S. (2007). Psychosocial issues of the adolescent cancer patient and the development of the teenage outreach programme (TOP). Journal of Psychosocial Oncology, 25(3), Zebrack, B. (2009). Information and service needs for young adult cancer survivors. Support Care Cancer, 17( ), Kwak, M., et al. (2013). "Prevalence and predictors of post-traumatic stress symptoms in adolescent and young adult cancer survivors: a 1-year follow-up study." Psycho-oncology 22(8): Varela, V. S., et al. (2013). "Posttraumatic stress disorder (PTSD) in survivors of Hodgkin's lymphoma: prevalence of PTSD and partial PTSD compared with sibling controls." Psycho-oncology 22(2): Palmer, S., Mitchell, A., Thompson, K., & Sexton, M., (2007). Unmet needs among adolescent cancer patients: A pilot study. Palliative and Supportive Care, 5, Ganz, P. A., Earle, C. C., & Goodwin, P. J. (2012). Journal of Clinical Oncology Update on Progress in Cancer Survivorship Care and Research. Journal of Clinical Oncology, 30(30), Thompson, K., Palmer, S., & Dyson, G. (2009). Adolescents and young adults: Issues in transition from active therapy into follow-up care. European Journal of Oncology Nursing, Von Essen, L., Enskär, K., Kreuger, A., Larsson, B., & Sjödén, P.O. (2000). Self-esteem, depression and anxiety among Swedish children and adolescents on and off cancer treatment. Acta Pædiatr, 89, Whyte, F., & Smith, L., (1997). A literature review of adolescence and cancer. European Journal of Cancer Care, 6, Zebrack, B. J. (2000). Cancer Survivor Identity and Quality of Life. Cancer Practove, 8(5), Decker, C. L. (2006). Coping in adolescents with cancer: a review of the literature. J Psychosoc Oncol, 24(4), Towle, A., Godolphin, W., & Van Staalduinen, S. (2006). Enhancing the relationship and improving communication between adolescents and their health care providers: A sc 16.Wood, W. A., & Lee, S. J. (2011). Malignant hematologic diseases in adolescents and young adults. Blood, 117(22), Erickson, J. M., MacPherson, C. F., Ameringer, S., Baggott, C., Linder, L., & Stegenga, K. (2013). Symptoms and symptom clusters in adolescents receiving cancer treatment: A review of the literature. International journal of nursing studies

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