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 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. 1980 Cancer Incidence & Death Rates* in Children 0-14 Years, 1975-2001 1975198519901995 Incidence Mortality Rate Per 100,000 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 *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. 5 - Year Relative Survival Rates * Age Year of Diagnosis 0 - 4 Years 0 - 4 Years 5 - 9 Years 10 - 14 years 1974 -1976 1995 - 2000 1974 -1976 1995 - 2000 1974 -1976 1995 - 2000

7. Cancer Incidence Rates* in Children 0-14 Years, By Site, 1997-2001 * 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 SiteMaleFemale Total All sites15.5 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

8. Cancer Death Rates* in Children 0-14 Years, By Site, 1997-2001 * 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. SiteMaleFemale 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

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

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.survivorshipguidelines.com –www.curesearch.org www.curesearch.org –www.cancer.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.bravekids.org –www.starlight.org/chemo - Starlight www.starlight.org/chemo –www.candlelighters.com - Candlelighters www.candlelighters.com –www.LLS.org – Lymphoma & Leukemia www.LLS.org –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

23. References American Cancer Society. Cancer Facts and Figures 2005. Atlanta: American Cancer Society; 2005. Bessell, AG. Children Surviving Cancer: Psychosocial Adjustment, Quality of Life and School Experiences. The Council for Exceptional Children 2001; 67(3):345-359. Frank NC, Brown RT, Blount RL, Bunke V. Predictors of Affective Responses Of Mothers and Fathers Of Children With Cancer. Psychooncology 2001; 10:293-304. Goldbeck L. Parental Coping With The Diagnosis Of Childhood Cancer. Psychooncology 2001; 10:325-335. Grootenhaus MA, Last BF. Children With Cancer With Different Survival Perspectives: Defensiveness, Control Strategies, and Psychological Adjustment. Psychooncology 2001; 10:305-314. Houtzager BA, Grootenhaus MA, Last BF. Supportive Groups For Siblings Of Pediatric Oncology Patients: Impact On Anxiety. Psychooncology 2001; 10:315-324. Jongsma AE, Peterson LM, McInnis WP. The Child Psychotherapy Treatment Planner. 2003. Hoboken, New Jersey. John Wiley & Sons. Joubeert D, Sadeghi MR, Elliott M, Devins GM, Laperriere N, Rodin G. Physical Sequelae and Self-Perceived Attachment In Adult Survivors of Childhood Cancer. Psychooncology 2001; 10:284-292. Kazak AE. Evidence-based Interventions for Survivors of Childhood Cancer and Their Families. J Pediatr Psychol 2005; 30(1):29-39. Kazak AE, Boving CA, Alderfer MA, Hwang W, Reily A. Posttraumatic Stress Symptoms During Treatment in Parents of Children With Cancer. J Clin Oncol 2005; 23(30):7405-7410. Patenaude AF, Kupst MJ. Psychosocial Functioning in Pediatric Cancer. J Pediatr Psychol 2005; 30(1):9-27. Patenaude AF, Last B. Cancer and Children: Where are We Coming from? Where are We Going? Psychooncology 2001; 10:281-283. Patterson JM, Holm K, Gurney JG. The Impact of Childhood Cancer On The Family: A Qualitative Analysis Of Strains, Resources, and Coping Behaviors. Psychooncology 2004; 13:390-407. Ries LAG, Eisner MP, Kosary CL, Hankey BF, Miller BA, Clegg L, Mariotto A, Feuer EJ, et al. (eds). SEER Cancer Statistics Review, 1975-2002, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2002/, based on November 2004 SEER data submission, posted to the SEER web site 2005. Rowland, JH. Forward:Looking Beyond Cure: Pediatric Cancer As a Model J Pediatr Psychol 2005; 30(1):1-3. Sharpe D, Rossiter L. Siblings of Children with a Chronic Illness: A Meta Analysis. J Pediatr Psychol 2002; 7(8):699-710. Sorgen KE, Manne SL. Coping in Children with Cancer: Examining the Goodness-of-Fit Hypothesis. Children's Healthcare 2002; 31(2):191-207. Streisand R, Kazak AE, Tercyak KP. Pediatric- Specific Parenting Stress and Family Functioning in Parents of Children Treated for Cancer. Children's Healthcare 2003; 32(4):245-256. Webb NB, Ed. Play Therapy With Children In Crisis: Individual Group and Therapy Treatment. 1999. New York, The Guilford Press. Zebrack BJ, Chesler MA. Quality of life in childhood cancer survivors. Psychooncology 2002; 11:132-141.