Download Pediatric Oncology: The Psychological Impact on the Family Unit

Pediatric Oncology: The
Psychological Impact on the
Family Unit
Master’s Presentation
Melissa Stone
Advisor- Lynn Hadley
March 2, 2006
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
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
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.
Cancer Incidence & Death Rates*
in Children 0-14 Years, 1975-2001
18
Rate Per 100,000
16
Incidence
14
12
10
8
6
4
Mortality
2
0
1975
1980
1985
1990
1995
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
Years, All Sites Combined, 19742000
Year of
Age
0 - 4 Years
Diagnosis
1974 -1976
5 - Year Relative Survival Rates *
56.7
1995 - 2000
5 - 9 Years
1974 -1976
78.3
55.4
1995 - 2000
10 - 14
years
1974 -1976
78.3
55.1
1995 - 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.
79.1
Cancer Incidence Rates* in Children 0-14
Years,
By Site, 1997-2001
Site
Male
All sites
15.5
14.1
14.8
4.8
4.2
4.5
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
Leukemia
Acute Lymphocytic
Female Total
* 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
Cancer Death Rates* in Children 0-14
Years,
By Site, 1997-2001
Site
Male
Female Total
All sites
2.7
2.3
2.5
Leukemia
0.9
0.7
0.8
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
Acute Lymphocytic
* 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.
Impact on the Patient (Child)
Physical: loss of hair, disability, decreased
energy
Psychosocial: anxiety, separation, lack of
peer interactions
Control
Separation
Death
?’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?
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
?’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.
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
?’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.
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.
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
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
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.
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
References
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