Pediatric Oncology: The Pediatric Oncology: The Psychological Impact on the Psychological Impact on the

Family UnitFamily Unit

Master’s PresentationMaster’s PresentationMelissa StoneMelissa Stone

Advisor- Lynn HadleyAdvisor- Lynn HadleyMarch 2, 2006March 2, 2006

ObjectivesObjectives

Explain History & Epidemiology of Explain History & Epidemiology of pediatric cancerpediatric cancer

Consider each individual unit of the family Consider 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 providers Explore Resources Available to providers and their patientsand their patients

History and Epidemiology of History and Epidemiology of Pediatric OncologyPediatric Oncology

1960 considered uniformly fatal and taboo 1960 considered uniformly fatal and taboo topic, not discussed with childrentopic, not discussed with childrenThen: Survival = Psychological impairmentThen: Survival = Psychological impairment1960 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 skills Today: Children are taught coping skills and communication is encouraged in the and communication is encouraged in the familyfamily

History and Epidemiology of History and Epidemiology of Pediatric OncologyPediatric Oncology

In 2005 estimated 9,510 < 14 yr oldIn 2005 estimated 9,510 < 14 yr oldBy age 20, 1 in 1000 children is a By age 20, 1 in 1000 children is a cancer survivorcancer survivorMost prevalent: Leukemia, Most prevalent: Leukemia, Lymphoma, brain/nervous, kidney, Lymphoma, brain/nervous, kidney, soft tissue, bonesoft tissue, boneAs incidence increases and mortality As incidence increases and mortality decreases more patients will be decreases more patients will be survivors or family of survivors. survivors or family of survivors.

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.

Trends in Survival, Children 0-14 Trends 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 andPopulation Sciences, National Cancer Institute, 2004.

5 - Year Relative Survival Rates *Age

Year ofDiagnosis

0 - 4 Years0 - 4 Years

5 - 9 Years5 - 9 Years

10 - 14 10 - 14

yearsyears

1974 -1976

1995 - 2000

1974 -1976

1995 - 2000

1974 -1976

1995 - 2000

Cancer Incidence Rates* in Children 0-14 Cancer 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 systemSource: 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

Cancer Death Rates* in Children 0-14 Cancer 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 systemSource: 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

Impact on the Patient (Child)Impact on the Patient (Child)

Physical: loss of hair, disability, decreased Physical: loss of hair, disability, decreased energyenergy

Psychosocial: anxiety, separation, lack of Psychosocial: anxiety, separation, lack of peer interactionspeer interactions

Control Control

SeparationSeparation

DeathDeath

?’s for Patient or Guardian?’s for Patient or Guardian

Past Medical HistoryPast Medical History

Ask to communicate with oncologist if Ask 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?

Impact on The ParentsImpact on The ParentsParents 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 showed 99% of mothers and 100% of fathers showed some percentage of PTSS some percentage of PTSS

99% of families with a child who is a survivor 99% of families with a child who is a survivor had at least 1 parent meet PTSD symptom of had at least 1 parent meet PTSD symptom of reexperiencingreexperiencing

Less likely to seek social support, report less Less 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

?’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 about You may be the only one asking about them and the only one they will be honest them and the only one they will be honest with.with.

The SiblingsThe SiblingsSiblings can be neglectedSiblings can be neglected

Siblings may see parents anxiety/fearSiblings may see parents anxiety/fear

Increased anxiety vs. peers with healthy Increased 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

?’s for Siblings?’s for Siblings

How is your home life?How is your home life?

How are your relationships with your How 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 get Be the siblings advocate so they don’t get lost in this stressful time. lost in this stressful time.

What is the effect on PA’s?What is the effect on PA’s?Due to insurance, soon after remission patients Due 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 see We must remember to look into PMH and see how it will effect our treatment. – Survivorship how it will effect our treatment. – Survivorship GuidelinesGuidelines

Psychological issues attached to cancer and Psychological issues attached to cancer and other chronic illness. Families and patients!!other chronic illness. Families and patients!!

Stigma is still a problem. Encourage families to Stigma is still a problem. Encourage families to participate in counseling and take advantage of participate in counseling and take advantage of resources in the community and online. resources in the community and online.

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 , screening Long term guidelines for follow-up , screening

and management of late effects in survivors of and management of late effects in survivors of childhood cancer childhood cancer www.survivorshipguidelines.comwww.survivorshipguidelines.com

– www.curesearch.orgwww.curesearch.org– www.cancer.orgwww.cancer.org– www.LLS.orgwww.LLS.org

Resources con’t…Resources con’t…

Second: Educate yourself on resources for your Second: 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 Center MD 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

Summary & ConclusionsSummary & ConclusionsMost likely we will all see a pediatric cancer Most likely we will all see a pediatric cancer survivor or a member of their family in our survivor or a member of their family in our practice now or down the road! Look for Red practice 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 for Don’t forget that your responsibility is to care for the entire patient, including their the entire patient, including their emotional/psychological needs. Refer them if emotional/psychological needs. Refer them if you aren’t equipped.you aren’t equipped.

Equip them with resources available. Equip them with resources available.

ReferencesReferences

www.acacamps.org - American Camping Associationwww.acacamps.org - American Camping Associationwww.bravekids.org - Bravekidswww.bravekids.org - Bravekidswww.cancer.org – American Cancer Societywww.cancer.org – American Cancer Societywww.candlelighters.org – Candlelighters (Ontario, www.candlelighters.org – Candlelighters (Ontario, Canada)Canada)www.children-cancer.com – National Children’s Cancer www.children-cancer.com – National Children’s Cancer SocietySocietywww.curesearch.org – CureSearchwww.curesearch.org – CureSearchwww.mdanderson.com – MD Anderson Cancer Centerwww.mdanderson.com – MD Anderson Cancer Centerwww.LLS.org – Lymphoma & Leukemia Societywww.LLS.org – Lymphoma & Leukemia Societywww.starlight.net – Starlight Children’s Foundationwww.starlight.net – Starlight Children’s Foundation

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