TRANSFORMING THE CHILDHOOD CANCER SURVIVOR EXPERIENCE Additional Material.

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Presentation transcript:

TRANSFORMING THE CHILDHOOD CANCER SURVIVOR EXPERIENCE Additional Material

The Facts Cancer is the number one disease killer of America's children.  Cancer kills more children each year than Cystic Fibrosis, Muscular Dystrophy, Asthma and AIDS combined.  One in 330 children will develop cancer by age 20  Although the 5 year survival rate is steadily increasing, one quarter of children will die within 5 years from the time of diagnosis. More than 1,750 children will be diagnosed in California this year. (~500 in the Bay Area)  Average treatment plan is 2 years. Surviving Brings Another Set of Problems  Two-thirds of children who do survive face life-long late-effects from the treatment of their disease. Of those, one quarter are classified as severe or life threatening.  Research on the emotional impact of childhood cancer finds that parents and siblings report even greater long term emotional impacts than the diagnosed child.

Childhood Cancer Diagnoses, by Type of Cancer: (Source: kidsdata.org) California0-14 years15-19 years Leukemia1, Lymphoma and Reticuloendothelial Neoplasms Central Nervous System and Miscellaneous Intracranial and Intraspinal Neoplasms Sympathetic Nervous System Tumors 219LNE Retinoblastoma115LNE Renal Tumors1626 Hepatic Tumors6611 Malignant Bone Tumors Soft Tissue Sarcomas Germ Cell/Trophoblastic and Other Gonadal Neoplasms Carcinomas and Other Malignant Epithelial Neoplasms Other and Unspecified Malignant Neoplasms LNE13 Total for all groups combined 3,5811,600

International Classification of Childhood Cancer* (a) Ependymomas & choroid plexus tumor (b) Astrocytomas (c) Intracranial & intraspinal embryonal tumors (d) Other gliomas III CNS and miscellaneous intracranial and intraspinal neoplasms (a) Neuroblastoma & ganglioneuroblastoma (b) Other peripheral nervous cell tumors IV Neuroblastoma and other peripheral nervous cell tumors No subtypes identified yet V Retinoblastoma * Steliarova-Foucher E, Stiller C, Lacour B, Kaatsch P. International Classification of Childhood Cancer, Third Edition. Cancer 2005;103: (a) Lymphoid leukemias (b) Acute myeloid leukemias (c) Chronic myeloproliferative diseases (d) Myelodysplastic syndrome and other myeloproliferative diseases I Leukemias, myeloproliferative diseases, and myelodysplastic diseases (a) Hodgkin lymphomas (b) Non-Hodgkin lymphomas (except Burkitt lymphoma) (c) Burkitt lymphoma (d) Miscellaneous lymphoreticular neoplasms (e) Unspecified lymphomas II Lymphomas and reticuloendothelial neoplasms

International Classification of Childhood Cancer* (a)Rhabdomyosarcomas (b) Fibrosarcomas, peripheral nerve sheath tumors, and other fibrous neoplasms (c) Kaposi sarcoma IX Soft tissue and other extraosseous sarcomas (a) Intracranial and intraspinal germ cell tumors (b) Malignant extracranial and extragonadal germ cell tumors (c) Malignant gonadal germ cell tumors (d) Gonadal carcinomas X Germ cell tumors, trophoblastic tumors, and neoplasms of gonads (a) Adrenocortical carcinomas (b) Thyroid carcinomas (c) Nasopharyngeal carcinomas (d) Malignant melanomas (e) Skin carcinomas XI Other malignant epithelial neoplasms and malignant melanomas * Steliarova-Foucher E, Stiller C, Lacour B, Kaatsch P. International Classification of Childhood Cancer, Third Edition. Cancer 2005;103: (a) Nephroblastoma and other nonepithelial renal tumors (b) Renal carcinomas VI Renal tumors (a) Nephroblastoma and other nonepithelial renal tumors (b) Renal carcinomas VI Renal tumors (a) Osteosarcomas (b) Chondrosarcomas (c) Ewing tumor and related sarcomas of bone VIII Malignant bone tumors

International Classification of Childhood Cancer* (a) Other specified malignant tumors (b) Other unspecified malignant tumors XII Other and unspecified malignant neoplasms Not Classified by ICCC or in situ * Steliarova-Foucher E, Stiller C, Lacour B, Kaatsch P. International Classification of Childhood Cancer, Third Edition. Cancer 2005;103:

Advocacy thru Alliance AwarenessPriorityTransform Content Creation (Stories) National Childhood Cancer Awareness Month & Day (9/13/08) Endowment Campaign Kid Specific Items Community Integration & Funding (Schools, Spiritual Centers, Sports Teams) National Action Plan National Registry Survivorship (treatment complications and Late effects) addressed Research Investments National Summit on Family Centered Best Practice Business and Caregiver Models Electronic Health Records Parent Advocate Tools and Training Parent Mentor Training Online Community Network Cancer Support Information Extended

Alliance Partner Programs Enable Financial support and capacity-building to community-centered initiatives that address the physical, emotional and practical challenges of cancer survivorship Develop & Grow Alliance Intranet and Conferences to: Discuss Best Practices & Challenges Exchange program & development details Provide Training Build Community