Melissa Stone

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  • 1. Pediatric Oncology: The Psychological Impact on the Family Unit Masters 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 1980 1975 1985 1990 1995 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 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 Site Male FemaleTotal All sites 15.5 14.114.8 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. Site Male FemaleTotal 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 0.70.7 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
  • 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 dont get lost in this stressful time.

15. What is the effect on PAs?

  • 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 cancerwww.survivorshipguidelines.com
    • www.curesearch.org
    • www.cancer.org
    • www.LLS.org

17. 18. Resources cont

  • 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

19. 20. 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
  • Dont forget that your responsibility is to care for the entire patient, including their emotional/psychological needs.Refer them if you arent 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 Childrens Cancer Society
  • www.curesearch.org CureSearch
  • www.mdanderson.com MD Anderson Cancer Center
  • www.LLS.org Lymphoma & Leukemia Society
  • www.starlight.net Starlight Childrens 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