Pediatric Oncology: ThePediatric Oncology: The
Psychological Impact on thePsychological Impact on the
Family UnitFamily Un...
ObjectivesObjectives
Explain History & Epidemiology ofExplain History & Epidemiology of
pediatric cancerpediatric cancer
C...
History and Epidemiology ofHistory and Epidemiology of
Pediatric OncologyPediatric Oncology
1960 considered uniformly fata...
History and Epidemiology ofHistory and Epidemiology of
Pediatric OncologyPediatric Oncology
In 2005 estimated 9,510 < 14 y...
1980
Cancer Incidence & Death Rates*Cancer Incidence & Death Rates*
in Children 0-14 Years, 1975-2001in Children 0-14 Year...
Trends in Survival, Children 0-14Trends in Survival, Children 0-14
Years, All Sites Combined, 1974-Years, All Sites Combin...
Cancer Incidence Rates* in Children 0-14Cancer Incidence Rates* in Children 0-14
Years,Years,
By Site, 1997-2001By Site, 1...
Cancer Death Rates* in Children 0-14Cancer Death Rates* in Children 0-14
Years,Years,
By Site, 1997-2001By Site, 1997-2001...
Impact on the Patient (Child)Impact on the Patient (Child)
Physical: loss of hair, disability, decreasedPhysical: loss of ...
?’s for Patient or Guardian?’s for Patient or Guardian
Past Medical HistoryPast Medical History
Ask to communicate with on...
Impact on The ParentsImpact on The Parents
Parents with sick child vs. healthy childParents with sick child vs. healthy ch...
?’s for Parents?’s for Parents
How is your family life?How is your family life?
Coping mechanisms? Mom vs. Dad?Coping mech...
The SiblingsThe Siblings
Siblings can be neglectedSiblings can be neglected
Siblings may see parents anxiety/fearSiblings ...
?’s for Siblings?’s for Siblings
How is your home life?How is your home life?
How are your relationships with yourHow are ...
What is the effect on PA’s?What is the effect on PA’s?
Due to insurance, soon after remission patientsDue to insurance, so...
Resources availableResources available
First: Educate yourself on these patients…First: Educate yourself on these patients...
Resources con’t…Resources con’t…
Second: Educate yourself on resources for yourSecond: Educate yourself on resources for y...
Summary & ConclusionsSummary & Conclusions
Most likely we will all see a pediatric cancerMost likely we will all see a ped...
ReferencesReferences
www.acacamps.org - American Camping Associationwww.acacamps.org - American Camping Association
www.br...
ReferencesReferences
American Cancer Society.American Cancer Society. Cancer Facts and Figures 2005.Cancer Facts and Figur...
Melissa Stone
Melissa Stone
Melissa Stone
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  • &amp;lt;number&amp;gt;
    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.
  • &amp;lt;number&amp;gt;
    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.
  • &amp;lt;number&amp;gt;
    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.
  • &amp;lt;number&amp;gt;
    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
  • Melissa Stone

    1. 1. Pediatric Oncology: ThePediatric Oncology: The Psychological Impact on thePsychological Impact on the Family UnitFamily Unit Master’s PresentationMaster’s Presentation Melissa StoneMelissa Stone Advisor- Lynn HadleyAdvisor- Lynn Hadley March 2, 2006March 2, 2006
    2. 2. ObjectivesObjectives Explain History & Epidemiology ofExplain History & Epidemiology of pediatric cancerpediatric cancer Consider each individual unit of the familyConsider each individual unit of the family and the impact cancer has on themand the impact cancer has on them Consider the Primary Care Provider RoleConsider the Primary Care Provider Role Explore Resources Available to providersExplore Resources Available to providers and their patientsand their patients
    3. 3. History and Epidemiology ofHistory and Epidemiology of Pediatric OncologyPediatric Oncology 1960 considered uniformly fatal and taboo1960 considered uniformly fatal and taboo topic, not discussed with childrentopic, not discussed with children Then: Survival = Psychological impairmentThen: Survival = Psychological impairment 1960 5 year survival rate = 28%1960 5 year survival rate = 28% 1970 5 year survival rate < 50 %1970 5 year survival rate < 50 % Survival rate in 2000 =79%Survival rate in 2000 =79% Today: Children are taught coping skillsToday: Children are taught coping skills and communication is encouraged in theand communication is encouraged in the familyfamily
    4. 4. History and Epidemiology ofHistory and Epidemiology of Pediatric OncologyPediatric Oncology In 2005 estimated 9,510 < 14 yr oldIn 2005 estimated 9,510 < 14 yr old By age 20, 1 in 1000 children is aBy age 20, 1 in 1000 children is a cancer survivorcancer survivor Most prevalent: Leukemia,Most prevalent: Leukemia, Lymphoma, brain/nervous, kidney,Lymphoma, brain/nervous, kidney, soft tissue, bonesoft tissue, bone As incidence increases and mortalityAs incidence increases and mortality decreases more patients will bedecreases more patients will be survivors or family of survivors.survivors or family of survivors.
    5. 5. 1980 Cancer Incidence & Death Rates*Cancer Incidence & Death Rates* in Children 0-14 Years, 1975-2001in Children 0-14 Years, 1975-2001 0 2 4 6 8 10 12 14 16 18 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. 6. Trends in Survival, Children 0-14Trends in Survival, Children 0-14 Years, All Sites Combined, 1974-Years, All Sites Combined, 1974- 20002000 *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 Years0 - 4 Years 5 - 9 Years5 - 9 Years 10 - 1410 - 14 yearsyears 1974 -1976 1995 - 2000 1974 -1976 1995 - 2000 1974 -1976 1995 - 2000
    7. 7. Cancer Incidence Rates* in Children 0-14Cancer Incidence Rates* in Children 0-14 Years,Years, By Site, 1997-2001By 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. 8. Cancer Death Rates* in Children 0-14Cancer Death Rates* in Children 0-14 Years,Years, By Site, 1997-2001By 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. 9. Impact on the Patient (Child)Impact on the Patient (Child) Physical: loss of hair, disability, decreasedPhysical: loss of hair, disability, decreased energyenergy Psychosocial: anxiety, separation, lack ofPsychosocial: anxiety, separation, lack of peer interactionspeer interactions ControlControl SeparationSeparation DeathDeath
    10. 10. ?’s for Patient or Guardian?’s for Patient or Guardian Past Medical HistoryPast Medical History Ask to communicate with oncologist ifAsk to communicate with oncologist if answers are unknownanswers are unknown How are you doing in school?How are you doing in school? How are interactions with peers?How are interactions with peers? Any anxiety or stress?Any anxiety or stress?
    11. 11. Impact on The ParentsImpact on The Parents Parents with sick child vs. healthy childParents with sick child vs. healthy child High % with Post Traumatic Stress SymptomsHigh % with Post Traumatic Stress Symptoms 99% of mothers and 100% of fathers showed99% of mothers and 100% of fathers showed some percentage of PTSSsome percentage of PTSS 99% of families with a child who is a survivor99% of families with a child who is a survivor had at least 1 parent meet PTSD symptom ofhad at least 1 parent meet PTSD symptom of reexperiencingreexperiencing Less likely to seek social support, report lessLess likely to seek social support, report less personal stability and lower quality of lifepersonal stability and lower quality of life Mothers Vs. FathersMothers Vs. Fathers
    12. 12. ?’s for Parents?’s for Parents How is your family life?How is your family life? Coping mechanisms? Mom vs. Dad?Coping mechanisms? Mom vs. Dad? Depression? Anxiety? Helplessness?Depression? Anxiety? Helplessness? You may be the only one asking aboutYou may be the only one asking about them and the only one they will be honestthem and the only one they will be honest with.with.
    13. 13. The SiblingsThe Siblings Siblings can be neglectedSiblings can be neglected Siblings may see parents anxiety/fearSiblings may see parents anxiety/fear Increased anxiety vs. peers with healthyIncreased anxiety vs. peers with healthy siblingssiblings Group therapy shown to decrease anxietyGroup therapy shown to decrease anxiety Look for anxiety, jealousy, guilt, isolation,Look for anxiety, jealousy, guilt, isolation, frustrationfrustration
    14. 14. ?’s for Siblings?’s for Siblings How is your home life?How is your home life? How are your relationships with yourHow are your relationships with your parents?parents? How do you get along with your siblings?How do you get along with your siblings? Any other concerns?Any other concerns? Be the siblings advocate so they don’t getBe the siblings advocate so they don’t get lost in this stressful time.lost in this stressful time.
    15. 15. What is the effect on PA’s?What is the effect on PA’s? Due to insurance, soon after remission patientsDue to insurance, soon after remission patients are sent back to PCP for follow up.are sent back to PCP for follow up. We must remember to look into PMH and seeWe must remember to look into PMH and see how it will effect our treatment. – Survivorshiphow it will effect our treatment. – Survivorship GuidelinesGuidelines Psychological issues attached to cancer andPsychological issues attached to cancer and other chronic illness. Families and patients!!other chronic illness. Families and patients!! Stigma is still a problem. Encourage families toStigma is still a problem. Encourage families to participate in counseling and take advantage ofparticipate in counseling and take advantage of resources in the community and online.resources in the community and online.
    16. 16. Resources availableResources available First: Educate yourself on these patients…First: Educate yourself on these patients… For Providers:For Providers: – Long term guidelines for follow-up , screeningLong term guidelines for follow-up , screening and management of late effects in survivors ofand management of late effects in survivors of childhood cancerchildhood cancer www.survivorshipguidelines.comwww.survivorshipguidelines.com – www.curesearch.orgwww.curesearch.org – www.cancer.orgwww.cancer.org – www.LLS.orgwww.LLS.org
    17. 17. Resources con’t…Resources con’t… Second: Educate yourself on resources for yourSecond: Educate yourself on resources for your patients and their familiespatients and their families Resources for patients and familiesResources for patients and families – MD Anderson Cancer CenterMD Anderson Cancer Center – www.bravekids.orgwww.bravekids.org - Bravekids- Bravekids – www.starlight.org/chemowww.starlight.org/chemo - Starlight- Starlight – www.candlelighters.comwww.candlelighters.com - Candlelighters- Candlelighters – www.LLS.orgwww.LLS.org – Lymphoma & Leukemia– Lymphoma & Leukemia – Community Resources, CampsCommunity Resources, Camps – HospiceHospice
    18. 18. Summary & ConclusionsSummary & Conclusions Most likely we will all see a pediatric cancerMost likely we will all see a pediatric cancer survivor or a member of their family in oursurvivor or a member of their family in our practice now or down the road! Look for Redpractice now or down the road! Look for Red Flags!!Flags!! PMH and FH are important in these patientsPMH and FH are important in these patients Don’t forget that your responsibility is to care forDon’t forget that your responsibility is to care for the entire patient, including theirthe entire patient, including their emotional/psychological needs. Refer them ifemotional/psychological needs. Refer them if you aren’t equipped.you aren’t equipped. Equip them with resources available.Equip them with resources available.
    19. 19. ReferencesReferences www.acacamps.org - American Camping Associationwww.acacamps.org - American Camping Association www.bravekids.org - Bravekidswww.bravekids.org - Bravekids www.cancer.org – American Cancer Societywww.cancer.org – American Cancer Society www.candlelighters.org – Candlelighters (Ontario,www.candlelighters.org – Candlelighters (Ontario, Canada)Canada) www.children-cancer.com – National Children’s Cancerwww.children-cancer.com – National Children’s Cancer SocietySociety www.curesearch.org – CureSearchwww.curesearch.org – CureSearch www.mdanderson.com – MD Anderson Cancer Centerwww.mdanderson.com – MD Anderson Cancer Center www.LLS.org – Lymphoma & Leukemia Societywww.LLS.org – Lymphoma & Leukemia Society www.starlight.net – Starlight Children’s Foundationwww.starlight.net – Starlight Children’s Foundation
    20. 20. ReferencesReferences American Cancer Society.American Cancer Society. Cancer Facts and Figures 2005.Cancer Facts and Figures 2005. Atlanta: American Cancer Society; 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;Bessell, AG. Children Surviving Cancer: Psychosocial Adjustment, Quality of Life and School Experiences. The Council for Exceptional Children 2001; 67(3):345-359.67(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;Frank NC, Brown RT, Blount RL, Bunke V. Predictors of Affective Responses Of Mothers and Fathers Of Children With Cancer. Psychooncology 2001; 10:293-304.10:293-304. Goldbeck L. Parental Coping With The Diagnosis Of Childhood Cancer. Psychooncology 2001; 10:325-335.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 PsychologicalGrootenhaus MA, Last BF. Children With Cancer With Different Survival Perspectives: Defensiveness, Control Strategies, and Psychological Adjustment. Psychooncology 2001; 10:305-314.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;Houtzager BA, Grootenhaus MA, Last BF. Supportive Groups For Siblings Of Pediatric Oncology Patients: Impact On Anxiety. Psychooncology 2001; 10:315-324.10:315-324. Jongsma AE, Peterson LM, McInnis WP.Jongsma AE, Peterson LM, McInnis WP. The Child Psychotherapy Treatment PlannerThe Child Psychotherapy Treatment Planner. 2003. Hoboken, New Jersey. John Wiley & Sons.. 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 ofJoubeert 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.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. 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 ClinKazak AE, Boving CA, Alderfer MA, Hwang W, Reily A. Posttraumatic Stress Symptoms During Treatment in Parents of Children With Cancer. J Clin Oncol 2005;Oncol 2005; 2323(30):7405-7410.(30):7405-7410. Patenaude AF, Kupst MJ. Psychosocial Functioning in Pediatric Cancer. J Pediatr Psychol 2005; 30(1):9-27.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.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 CopingPatterson 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.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).Ries LAG, Eisner MP, Kosary CL, Hankey BF, Miller BA, Clegg L, Mariotto A, Feuer EJ, et al. (eds). SEER Cancer Statistics Review, 1975-2002SEER 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 theNational 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.SEER web site 2005. Rowland, JH. Forward:Looking Beyond Cure: Pediatric Cancer As a Model J Pediatr Psychol 2005; 30(1):1-3.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.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.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'sStreisand 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.Healthcare 2003; 32(4):245-256. Webb NB, Ed.Webb NB, Ed. Play Therapy With Children In Crisis: Individual Group and Therapy TreatmentPlay Therapy With Children In Crisis: Individual Group and Therapy Treatment. 1999. New York, The Guilford Press.. 1999. New York, The Guilford Press. Zebrack BJ, Chesler MA. Quality of life in childhood cancer survivors. Psychooncology 2002; 11:132-141.Zebrack BJ, Chesler MA. Quality of life in childhood cancer survivors. Psychooncology 2002; 11:132-141.
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