Pediatric Oncology: The Psychological Impact on the Family Unit

1. Pediatric Oncology: The Psychological Impact on the Family Unit Master’s Presentation Melissa Stone Advisor- Lynn Hadley March 2, 2006

2. Objectives • Explain History & Epidemiology of pediatric cancer • Consider each individual unit of the family and the impact cancer has on them • Consider the Primary Care Provider Role • Explore Resources Available to providers and their patients

3. History and Epidemiology of Pediatric Oncology • 1960 considered uniformly fatal and taboo topic, not discussed with children • Then: Survival = Psychological impairment • 1960 5 year survival rate = 28% • 1970 5 year survival rate < 50 % • Survival rate in 2000 =79% • Today: Children are taught coping skills and communication is encouraged in the family

4. History and Epidemiology of Pediatric Oncology • In 2005 estimated 9,510 < 14 yr old • By age 20, 1 in 1000 children is a cancer survivor • Most prevalent: Leukemia, Lymphoma, brain/nervous, kidney, soft tissue, bone • As incidence increases and mortality decreases more patients will be survivors or family of survivors.

5. Cancer Incidence & Death Rates* in Children 0-14 Years, 1975-2001 Rate Per 100,000 Incidence Mortality 1975 1980 1985 1990 1995 2001 *Age-adjusted to the 2000 Standard population. Source: Surveillance, Epidemiology, and End Results Program, 1975-2001, Division of Cancer Control and Population Sciences, National Cancer Institute, 2004.

6. Trends in Survival, Children 0-14 Years, All Sites Combined, 1974-2000 Year ofDiagnosis Age 5 - Year Relative Survival Rates * 0 - 4 Years 5 - 9 Years 10 - 14 years 1974 -1976 1995 - 2000 1974 -1976 1995 - 2000 1974 -1976 1995 - 2000 *5-year relative survival rates, based on follow up of patients through 2001.Source: Surveillance, Epidemiology, and End Results Program, 1975-2001, Division of Cancer Control and Population Sciences, National Cancer Institute, 2004.

7. Cancer Incidence Rates* in Children 0-14 Years, By Site, 1997-2001 Site Male Female Total All sites 15.5 14.1 14.8 Leukemia 4.8 4.2 4.5 Acute Lymphocytic 3.8 3.4 3.6 Brain/ONS 3.5 3.1 3.3 Soft tissue 1.0 1.0 1.0 Non-Hodgkin lymphoma 1.3 0.6 0.9 Kidney and renal pelvis 0.8 1.0 0.9 Bone and Joint 0.8 0.6 0.7 Hodgkin lymphoma 0.6 0.5 0.6 * Per 100,000, age-adjusted to the 2000 US standard population. ONS = Other nervous system Source: Surveillance, Epidemiology, and End Results Program, 1975-2001, Division of Cancer Control and Population Sciences, National Cancer Institute, 2004

8. Cancer Death Rates* in Children 0-14 Years, By Site, 1997-2001 Site Male Female Total All sites 2.7 2.3 2.5 Leukemia 0.9 0.7 0.8 Acute Lymphocytic 0.4 0.3 0.4 Brain/ONS 0.7 0.7 0.7 Non-Hodgkin lymphoma 0.1 0.1 0.1 Soft tissue 0.1 0.1 0.1 Bone and Joint 0.1 0.1 0.1 Kidney and Renal pelvis 0.1 0.1 0.1 * Per 100,000, age-adjusted to the 2000 US standard population. ONS = Other nervous system Source: Surveillance, Epidemiology, and End Results Program, 1975-2001, Division of Cancer Control and Population Sciences, National Cancer Institute, 2004.

9. Impact on the Patient (Child) • Physical: loss of hair, disability, decreased energy • Psychosocial: anxiety, separation, lack of peer interactions • Control • Separation • Death

10. ?’s for Patient or Guardian • Past Medical History • Ask to communicate with oncologist if answers are unknown • How are you doing in school? • How are interactions with peers? • Any anxiety or stress?

11. Impact on The Parents • Parents with sick child vs. healthy child • High % with Post Traumatic Stress Symptoms • 99% of mothers and 100% of fathers showed some percentage of PTSS • 99% of families with a child who is a survivor had at least 1 parent meet PTSD symptom of reexperiencing • Less likely to seek social support, report less personal stability and lower quality of life • Mothers Vs. Fathers

12. ?’s for Parents • How is your family life? • Coping mechanisms? Mom vs. Dad? • Depression? Anxiety? Helplessness? • You may be the only one asking about them and the only one they will be honest with.

13. The Siblings • Siblings can be neglected • Siblings may see parents anxiety/fear • Increased anxiety vs. peers with healthy siblings • Group therapy shown to decrease anxiety • Look for anxiety, jealousy, guilt, isolation, frustration

14. ?’s for Siblings • How is your home life? • How are your relationships with your parents? • How do you get along with your siblings? • Any other concerns? • Be the siblings advocate so they don’t get lost in this stressful time.

15. What is the effect on PA’s? • Due to insurance, soon after remission patients are sent back to PCP for follow up. • We must remember to look into PMH and see how it will effect our treatment. – Survivorship Guidelines • Psychological issues attached to cancer and other chronic illness. Families and patients!! • Stigma is still a problem. Encourage families to participate in counseling and take advantage of resources in the community and online.

16. Resources available • First: Educate yourself on these patients… • For Providers: • Long term guidelines for follow-up , screening and management of late effects in survivors of childhood cancer www.survivorshipguidelines.com • www.curesearch.org • www.cancer.org • www.LLS.org

18. Resources con’t… • Second: Educate yourself on resources for your patients and their families • Resources for patients and families • MD Anderson Cancer Center • www.bravekids.org - Bravekids • www.starlight.org/chemo - Starlight • www.candlelighters.com - Candlelighters • www.LLS.org – Lymphoma & Leukemia • Community Resources, Camps • Hospice

21. Summary & Conclusions • Most likely we will all see a pediatric cancer survivor or a member of their family in our practice now or down the road! Look for Red Flags!! • PMH and FH are important in these patients • Don’t forget that your responsibility is to care for the entire patient, including their emotional/psychological needs. Refer them if you aren’t equipped. • Equip them with resources available.

22. References • www.acacamps.org - American Camping Association • www.bravekids.org - Bravekids • www.cancer.org – American Cancer Society • www.candlelighters.org – Candlelighters (Ontario, Canada) • www.children-cancer.com – National Children’s Cancer Society • www.curesearch.org – CureSearch • www.mdanderson.com – MD Anderson Cancer Center • www.LLS.org – Lymphoma & Leukemia Society • www.starlight.net – Starlight Children’s Foundation

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