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Integrating the Child with Chronic Illness into General
Pediatric Nursing Practice:
The Model of Childhood Cancer Survivorship
Holly DeLuca, MSN, PNP-BC, CPON
Debbie Lafond, MS, PNP-BC, CPON
Center for Cancer and Blood Disorders
Childrens National Medical CenterJune 2009
Objectives
1. Discuss landmarks in pediatric oncologyand identify demographics of childhoodcancer survivors today
2. Define late effects of childhood cancertherapy
3. Discuss the etiology of long term effects
of childhood cancer treatment andassociated risk factors
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Objectives Continued
4. Recognize challenges faced by childhood cancer
survivors and survivors of other chronic and/or life
threatening childhood illnesses today including:
medical, educational, social/emotional, legal and
financial
5. Identify components of a long term follow-up program
and the importance of the pediatric nurse as a key
member of the survivorship team.
6. Discuss the role of the pediatric nurse in helping this
unique population of patients integrate the chronic /late effects of illness and treatment to live productive
and meaningful lives
Landmarks in Pediatric Oncology
1970s- Recognition that curewas possible
- Proliferation ofrandomized clinical
trials
- Effective multi-modality
protocols
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Landmarks: continued
1980s- Tailoring therapy to riskfactors
- Defining late effects
- Reducing radiationdose
- Substituting effectivedrugs for radiation
Landmarks Continued
1990s
- Understanding of dose related effects
- Initiating efforts to track and educate
survivors
2000s
- Surveillance for late effects based on risk
- Interventions to reduce late effects- Transition to adult health care
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Childhood Cancer Survivors Now
Over 270,000 childhood cancer survivors livingin the United States
1 in 1000 is a childhood cancer survivor
1 in 570 is a childhood cancer survivor in thoseage 20-34 years
What does survivorship mean?
5 year survival rate isapproaching 80%
2/3 will experience atleast 1 late effect
1/3 will experience asevere or life threatening
late effect
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Late Effects of
Childhood Cancer Treatment
Definition persistent and
adverse changes thatare directly related todisease process,treatment process orboth
Disease
Location of tumor
Treatment Surgery
Chemotherapy
Radiation
Late Effects: Causes
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Late Effects: continued
Risk Factors
Age and developmental stage
Gender
Co-morbidities
Family history and/or geneticpredispositions
Location of tumor
Types and dose ofchemotherapy agents
Site, dose and type of radiation
Types of Late Effects
Physical
Endocrine
Neurocognitive
Second malignancies
Psychosocial
Emotional
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Physical Late Effects
Head and Neck
Central Nervous System
Pulmonary
Cardiovascular
Gastrointestinal
Genitourinary
Musculoskeletal
Renal
Integumentary
Hematopoetic
Head and Neck
Why this area affected? Sensitive structures
Common site for soft
tissue tumors
Development during
childhood is essential to
maximum health in
adulthood
Common Late Effects:
1. Hypoplasia of bone
- > 30 GyRadiation
2. Skin necrosis/ulceration
- > 70 GyRadiation
3. Growth disturbances
- Radiation & Chemo
4. Xerostomia
- > 30 Gy Radiation
5. Sensorineural hearing loss
- Radiation & Chemo
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Ocular Late Effects
Hyperkeratosis
Chronic injection ofconjunctiva and sclera
Cataracts
Glaucoma with prolongedsteroid use
Retinopathy
Deformities in orbital bone
growth
Effects on Hearing
Conductive hearing loss
Sensorineural hearingloss
Chronic otitis externa
Stenosis or necrosis ofear canal
Excess cerumen
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Dental Late Effects
Delayed dentition
Missing orunderdeveloped
permanent teeth
Increased Caries
Blunting, thinning andshortening of roots
Hypocalcification
CNS Late Effects
Age at diagnosis andduring treatment is an
important factor
Paralysis
Neuropathies
Seizures
Neurocognitive problems
Shunt function
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Pulmonary Late Effects
Obstructive, restrictive,interstitial or
combination lung disease
Pneumonitis
Pulmonary Fibrosis
Frequent pneumonias
Non-cardiogenicpulmonary edema
Cardiovascular Late Effects
Coronary artery disease
Pericarditis
Cardiomyopathy
CHF
Valve damage
Arrhythmias
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Gastrointestinal Late Effects
Hepatitis/Hepaticdysfunction/Cirrhosis
Feeding disorders
Chronic GVHD
Esophageal strictures
Esophogitis/GERD
Adhesions
Enteritis
Genitourinary Late Effects
Renal function
Urethral strictures orfibrosis
Bladder and/or boweldysfunction
Vaginal fibrosis,malformation, fistulas
Testicular/Prostatedysfunction
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Musculoskeletal Late Effects
Hypoplasia
Leg length discrepencies
Prosthetic devices
Scoliosis
Amputation
Rhabdyomyolisis
Slipped capitofemoralepiphysis
Musculoskeletal Effects:
continued
Exostosis
Osteonecrosis
Fibrosis/Contractures
Bone density changes
-osteopenia / osteoporosis
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Integumentary Late Effects
Pigment changes
Alopecia
Melanoma/Skin cancers
Skin necrosis
Telangiectasia
spidery blood vessels beneaththe skin surface
Fibrosis/contractures/scarring/ striae
Acceleration of skin aging
Hematopoetic Late Effects
Immune reconstitution
Re-immunization
Chronic anemia
Chronicthrombocytopenia
Eosinophilia
Especially after stem cell
transplant
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Endocrine Late Effects
Thyroid
Growth
Fertility
Gonadal
Pituitary
Adrenal insufficiency
Diabetes
Osteopenia
Hypothalamic obesity
Thyroid Late Effects
Hypothyroidism
Hyperthyroidism
Thyroid nodules
Silent thyroiditis
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Effects on Growth
Growth hormone
deficiency
Microcephaly
Catch up growth aftercompletion of therapy
Effects on Gonads and Fertility
Precocious or delayedpuberty
Ovarian dysfunction
Primary
Secondary
Egg harvest or donation
Testicular dysfunction
Primary Secondary
Sperm banking or donors
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Adrenal Insufficiency & Diabetes
ACTH deficiency
SIADH/Salt wasting
syndrome
Diabetes mellitus
Diabetes insipidis
Osteopenia
May be
asypmtomatic
Risk of fractures
Bone density
screening
Calcium and Vitamin
D supplements Exercise with impact
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Hypothalamic Obesity
Unrelenting weight gainthat does not respond to
diet or exercise
modifications
Risk greater for braintumor survivors
Age < 6 years at dx
Radiation
Tumor location
Risk greater with presenceof other endocrinopathies
Neurocognitive Late Effects
Learning disabilities
Loss of IQ points
Developmental delay
Attention deficit
Behavioral abnormalities
Fine and gross motorcoordination difficulties
Decrease in processingspeed
Memory loss
Leukoencephalopathy
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Second Malignancies
Thyroid carcinoma
Leukemia or MDS
Bone tumors
Meningiomas
Brain tumors
Skin cancers
Breast cancer
Psychosocial/Emotional Effects
Post traumatic stress
Quality of life
Social functioning
Functional impact
Depression
Anxiety
Fatigue Sleep disorders
Body image
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Challenges for Survivors
Medical
Educational
Social/Emotional
Employment
Legal
Financial
Medical Challenges
Survivor of childhooddisease
Integration into adult healthcare
Health insurance
Americans with Disabilities
Act
Comprehensive Omnibus
Budget Reconciliation Act SSI
HIPPA
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Educational Challenges
Right to education
Individuals with DisabilitiesAct
Americans with Disabilities
Act
IEP & 504 plans
Cognitive remediation
Neurocognitive testing
Need to readjust personalgoals
Social/Emotional Challenges
High risk behaviors
-smoking
-alcohol abuse
-drug use
-sexual promiscuity
Difficulty finding peergroup
Intimacy
Anxiety
Depression
Sleep disturbance
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Challenges with Employment
Physical disabilities
Psychosocial disabilities
Neurocognitive issues
Insurability
Chronic fatigue
Maintaining employment
Job discrimination
Inability to serve in military
(some cases)
Financial Challenges
Income
Lower paying job due todisabilities
Job discrimination leading to
lower salary and promotions
Medical bills
Debt from treatment
Costs incurred from medicalcare for late effects and
follow-up
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Care of Survivors
Challenges
Lack of knowledge ofprimary care providers
Long term follow-up
programs
Pediatric Cancer Centers
Adult cancer centers
Role of Pediatric Nurse
Program coordination
Screening
-History and phsycial exam
-COG long-term follow-upguidelines
Educating Survivors
-treatment summaries
-recommendations forlong-term follow-up
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Other Childhood Illnesses
Cystic Fibrosis
Sickle Cell disease
Hemophilia
Congenital CardiacDefects
Others
Models of Integration
Empowering patients
and families
Integration of
chronic/late effects
Advocacy
Transition to adult
care
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Case Study
Daniel is now a 13 year old survivor of a
Medulloblastoma, a type of childhood brain tumor.
He was diagnosed at the age of 4 years.
Prior to diagnosis, he was an active child and had
exceeded normal developmental milestones. He
was attending preschool and enjoyed spending
time with his siblings who were 6 years and 9 years
at the time he was diagnosed.
Daniel underwent a gross total resection of his
tumor and there was no evidence of metastatic
disease. He required a VP shunt for obstructive
hydrocephalus.
He recovered well post-operatively with mildcerebellar mutism syndrome, characterized by
mild ataxia and fine/gross motor abormalities and
halting speech.
These deficits were recovering but he required
several subsequent shunt revisions that left him
more permanently impaired.
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He was enrolled on a COG clinical trial and
received craniospinal radiation therapy (2400 cGy)
with adjuvant chemotherapy including Cisplatin,
CCNU and Vincristine. Therapy was completed in
18 months.
Daniel received intensive rehabilitation servicesincluding PT, OT, and speech therapy and did
have some improvements.
Daniel is now a 9 year cancer survivor.
He was unable to attend school during therapy but
did have a home tutor and was able to complete
elementary with an IEP and 504 plan in place. He
is currently in a 6th grade special education class.
Late effect of therapy include:
Cerebellar mutism syndrome
Severe ataxia requiring wheelchair for mobility Sensorineural hearing loss requiring bilateral hearing aides
Hypothyroidism
Adrenal insufficiency
Growth hormone deficiency
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Late effects: continued
Tanner Stage I delayed puberty
Esophageal strictures requiring gastrostomy tube
Pulmonary fibrosis
Central sleep apnea requiring tracheostomy and ventilatorysupport at night
Hypertension related to renal tubular acidosis
Obesity related to hypothyroidism
Chronic fatigue syndrome
Integrating Daniel into your pediatric
practice
What issues/challenges do you foresee forthis patient and family?
What screening needs to be done on anannual basis (at a minimum)?
What resources might you suggest for thisfamily?
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Challenges
Where to receive LTFU
Multiple medical specialties needed
Financial impact on family
Impact on siblings
Psychosocial issues
Neurocognitive issues
School re-entry issues
High school diploma track appropriate?
Vocational track?
Thank you!
Questions?
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Contact info
[email protected] Holly DeLuca
[email protected] Debbie Lafond