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  • Illustrate incidence increase and mortality decrease = more post treatment patients and their families. Cancer-related mortality has been decreasing in children ages 0-14 steadily for more than 2 decades, although the rate of decrease appears to have slowed since the mid 1990s. Incidence rates have stabilized since the 1980s.
  • This survival rate has increase across the age groups of children and adolescents. The 5-year relative survival rate for all three age groups increased significantly between the mid 1970s and late 1990s. For example, the 5-year relative survival rate increased from 55.1% in 1974-76 to 79.1% in 1995-2000 for cases diagnosed among children 10-14 years old.
  • Leukemia is the most common cancer among children ages 0-14 years and comprises approximately 30% of all childhood cancers. Acute lymphocytic cancer is the most common form of leukemia in children. Cancer of the brain/other nervous system is the second most common incident cancer in both boys and girls.
  • Leukemia also accounts for the most cancer deaths in children, and comprises roughly a third of cancer deaths among boys and girls 0-14 years. Cancers of the brain/other nervous system are the second leading cause of cancer death in children 0-14.
  • Two significant challenges children may face in their cancer battle are separation/loss and control/competence. These concepts apply not only to the control of their life and potential loss of their life, but also loss of friends, normalcy, time, and physical losses such as hair. Children should eventually comprehend the four main components of understanding death: that death is irreversible, is inevitable, is universal, and results in cessation of bodily functions Research has been done to show that children with cancer think about death more often than well children and are capable of handling this concept
  • Remember to ask your patients or their guardian about their health history. If they are unable to give specific details, ask for consent to communicate with their oncologist. Knowing this vital history will enable you to choose procedures and treatments that will put your patients at the least risk and allow you to pick up on diagnosis you may have otherwise missed (Rowland, 2005). This history may also initiate further questioning about the patient’s psychological or psychosocial well being.
  • Parents with a sick child were less likely to seek social support compared with the parents in the control group In their study of 163 parents whose children were on treatment, 99% of the mothers and 100% of the fathers showed some degree of PTSS. In parents of survivors, 99% of the families had, “at least one parent meet posttraumatic stress disorder (PTSD) symptom of reexperiencing, and 20% of the families had one parent with current PTSD.” “ mothers more frequently use social support seeking strategies, information seeking, and religious coping, and they are more successful in maintaining family integration and optimism, in maintaining personal stability and in understanding the medical situation of their child.”
  • As a primary care provider this knowledge should lead you to ask questions about the family life and the coping mechanisms of the parents. Parents may have pushed their emotions to the side in order to care for their child and you may be the only person asking how they really are handling things emotionally. The psychological care of your patient is just as critical as their presenting physical complaints.
  • Often the needs of a sibling of the patient are neglected compared to his/her sick brother or sister. The sick child receives many visitors, lots of attention and gifts and special privileges. The parents may also show anxiety and fear to the healthy sibling while maintaining composure with the sick child The percentile of siblings showing the highest level of anxiety went from 75% to 46% after group therapy. Siblings discussed things such as changes in attention due to their sibling’s illness, emotions related to the illness and practical education with the opportunity to ask doctors and nurses questions regarding cancer.
  • As a primary care provider you should be inquiring about the child’s home life and relationship with family members including their siblings. Often times the needs of these children are overlooked and you may need to be their advocate and communicate the needs of this child to their parents


  • 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 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 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
  • 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 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
  • 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
  • 17.  
  • 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
  • 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
    • 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.