Melissa Stone

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<ul><li> 1. Pediatric Oncology: The Psychological Impact on the Family Unit Masters Presentation Melissa Stone Advisor- Lynn Hadley March 2, 2006</li></ul> <p> 2. Objectives </p> <ul><li>Explain History &amp; Epidemiology of pediatric cancer </li></ul> <ul><li>Consider each individual unit of the family and the impact cancer has on them </li></ul> <ul><li>Consider the Primary Care Provider Role </li></ul> <ul><li>Explore Resources Available to providers and their patients </li></ul> <p> 3. History and Epidemiology of Pediatric Oncology </p> <ul><li>1960 considered uniformly fatal and taboo topic, not discussed with children </li></ul> <ul><li>Then: Survival = Psychological impairment </li></ul> <ul><li>1960 5 year survival rate = 28% </li></ul> <ul><li>1970 5 year survival rate &lt; 50 % </li></ul> <ul><li>Survival rate in 2000 =79% </li></ul> <ul><li>Today: Children are taught coping skills and communication is encouraged in the family </li></ul> <p> 4. History and Epidemiology of Pediatric Oncology </p> <ul><li>In 2005 estimated 9,510 &lt; 14 yr old </li></ul> <ul><li>By age 20, 1 in 1000 children is a cancer survivor </li></ul> <ul><li>Most prevalent: Leukemia, Lymphoma, brain/nervous, kidney, soft tissue, bone </li></ul> <ul><li>As incidence increases and mortality decreases more patients will be survivors or family of survivors.</li></ul> <p> 5. Cancer Incidence &amp; 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) </p> <ul><li>Physical: loss of hair, disability, decreased energy </li></ul> <ul><li>Psychosocial: anxiety, separation, lack of peer interactions </li></ul> <ul><li>Control</li></ul> <ul><li>Separation </li></ul> <ul><li>Death </li></ul> <p> 10. ?s for Patient or Guardian </p> <ul><li>Past Medical History </li></ul> <ul><li>Ask to communicate with oncologist if answers are unknown </li></ul> <ul><li>How are you doing in school? </li></ul> <ul><li>How are interactions with peers? </li></ul> <ul><li>Any anxiety or stress?</li></ul> <p> 11. Impact on The Parents </p> <ul><li>Parents with sick child vs. healthy child </li></ul> <ul><li>High % with Post Traumatic Stress Symptoms </li></ul> <ul><li>99% of mothers and 100% of fathers showed some percentage of PTSS</li></ul> <ul><li>99% of families with a child who is a survivor had at least 1 parent meet PTSD symptom of reexperiencing </li></ul> <ul><li>Less likely to seek social support, report less personal stability and lower quality of life </li></ul> <ul><li>Mothers Vs. Fathers </li></ul> <p> 12. ?s for Parents </p> <ul><li>How is your family life? </li></ul> <ul><li>Coping mechanisms? Mom vs. Dad? </li></ul> <ul><li>Depression? Anxiety? Helplessness? </li></ul> <ul><li>You may be the only one asking about them and the only one they will be honest with. </li></ul> <p> 13. The Siblings </p> <ul><li>Siblings can be neglected </li></ul> <ul><li>Siblings may see parents anxiety/fear </li></ul> <ul><li>Increased anxiety vs. peers with healthy siblings </li></ul> <ul><li>Group therapy shown to decrease anxiety </li></ul> <ul><li>Look for anxiety, jealousy, guilt, isolation, frustration </li></ul> <p> 14. ?s for Siblings </p> <ul><li>How is your home life? </li></ul> <ul><li>How are your relationships with your parents? </li></ul> <ul><li>How do you get along with your siblings? </li></ul> <ul><li>Any other concerns? </li></ul> <ul><li>Be the siblings advocate so they dont get lost in this stressful time.</li></ul> <p> 15. What is the effect on PAs? </p> <ul><li>Due to insurance, soon after remission patients are sent back to PCP for follow up. </li></ul> <ul><li>We must remember to look into PMH and see how it will effect our treatment. Survivorship Guidelines </li></ul> <ul><li>Psychological issues attached to cancer and other chronic illness. Families and patients!! </li></ul> <ul><li>Stigma is still a problem. Encourage families to participate in counseling and take advantage of resources in the community and online.</li></ul> <p> 16. Resources available </p> <ul><li>First: Educate yourself on these patients </li></ul> <ul><li>For Providers: </li></ul> <ul><li><ul><li>Long term guidelines for follow-up , screening and management of late effects in survivors of childhood cancerwww.survivorshipguidelines.com </li></ul></li></ul> <ul><li><ul><li>www.curesearch.org </li></ul></li></ul> <ul><li><ul><li>www.cancer.org </li></ul></li></ul> <ul><li><ul><li>www.LLS.org </li></ul></li></ul> <p> 17. 18. Resources cont </p> <ul><li>Second: Educate yourself on resources for your patients and their families </li></ul> <ul><li>Resources for patients and families </li></ul> <ul><li><ul><li>MD Anderson Cancer Center</li></ul></li></ul> <ul><li><ul><li>www.bravekids.org- Bravekids </li></ul></li></ul> <ul><li><ul><li>www.starlight.org/chemo- Starlight </li></ul></li></ul> <ul><li><ul><li>www.candlelighters.com- Candlelighters </li></ul></li></ul> <ul><li><ul><li>www.LLS.org Lymphoma &amp; Leukemia </li></ul></li></ul> <ul><li><ul><li>Community Resources, Camps </li></ul></li></ul> <ul><li><ul><li>Hospice </li></ul></li></ul> <p> 19. 20. 21. Summary &amp; Conclusions </p> <ul><li>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!! </li></ul> <ul><li>PMH and FH are important in these patients </li></ul> <ul><li>Dont forget that your responsibility is to care for the entire patient, including their emotional/psychological needs.Refer them if you arent equipped. </li></ul> <ul><li>Equip them with resources available.</li></ul> <p> 22. References </p> <ul><li>www.acacamps.org- American Camping Association </li></ul> <ul><li>www.bravekids.org- Bravekids </li></ul> <ul><li>www.cancer.org American Cancer Society </li></ul> <ul><li>www.candlelighters.org Candlelighters (Ontario, Canada) </li></ul> <ul><li>www.children-cancer.com National Childrens Cancer Society </li></ul> <ul><li>www.curesearch.org CureSearch </li></ul> <ul><li>www.mdanderson.com MD Anderson Cancer Center </li></ul> <ul><li>www.LLS.org Lymphoma &amp; Leukemia Society </li></ul> <ul><li>www.starlight.net Starlight Childrens Foundation </li></ul> <p> 23. References </p> <ul><li>American Cancer Society.Cancer Facts and Figures 2005.Atlanta: American Cancer Society; 2005. </li></ul> <ul><li>Bessell, AG. Children Surviving Cancer: Psychosocial Adjustment, Quality of Life and School Experiences. The Council for Exceptional Children 2001; 67(3):345-359. </li></ul> <ul><li>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. </li></ul> <ul><li>Goldbeck L. Parental Coping With The Diagnosis Of Childhood Cancer. Psychooncology 2001; 10:325-335. </li></ul> <ul><li>Grootenhaus MA, Last BF. Children With Cancer With Different Survival Perspectives: Defensiveness, Control Strategies, and Psychological Adjustment. Psychooncology 2001; 10:305-314. </li></ul> <ul><li>Houtzager BA, Grootenhaus MA, Last BF. Supportive Groups For Siblings Of Pediatric Oncology Patients: Impact On Anxiety. Psychooncology 2001; 10:315-324. </li></ul> <ul><li>Jongsma AE, Peterson LM, McInnis WP.The Child Psychotherapy Treatment Planner .2003. Hoboken, New Jersey. John Wiley &amp; Sons.</li></ul> <ul><li>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. </li></ul> <ul><li>Kazak AE. Evidence-based Interventions for Survivors of Childhood Cancer and Their Families. J Pediatr Psychol 2005; 30(1):29-39. </li></ul> <ul><li>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. </li></ul> <ul><li>Patenaude AF, Kupst MJ. Psychosocial Functioning in Pediatric Cancer. J Pediatr Psychol 2005; 30(1):9-27. </li></ul> <ul><li>Patenaude AF, Last B. Cancer and Children: Where are We Coming from? Where are We Going? Psychooncology 2001; 10:281-283. </li></ul> <ul><li>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. </li></ul> <ul><li>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. </li></ul> <ul><li>Rowland, JH. Forward:Looking Beyond Cure: Pediatric Cancer As a Model J Pediatr Psychol 2005; 30(1):1-3. </li></ul> <ul><li>Sharpe D, Rossiter L. Siblings of Children with a Chronic Illness: A Meta Analysis. J Pediatr Psychol 2002; 7(8):699-710. </li></ul> <ul><li>Sorgen KE, Manne SL. Coping in Children with Cancer: Examining the Goodness-of-Fit Hypothesis. Children's Healthcare 2002; 31(2):191-207. </li></ul> <ul><li>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. </li></ul> <ul><li>Webb NB, Ed.Play Therapy With Children In Crisis: Individual Group and Therapy Treatment . 1999. New York, The Guilford Press.</li></ul> <ul><li>Zebrack BJ, Chesler MA. Quality of life in childhood cancer survivors. Psychooncology 2002; 11:132-141. </li></ul>