Transcript Transitions: A necessary aspect of your child’s care

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Optimizing the Lifelong Health of
Childhood Cancer Survivors:
Transitions
Wendy Hobbie, MSN, CRNP, FAAN
Associate Director
Cancer Survivorship Program
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Transitions
 Diagnosis
 Treatment
 Completing Treatment
 Disease
Monitoring
 Long Term
 From
Follow-up Care
Pediatric----Adult Health Care System
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Completion Of Treatment
 Both
celebration and anxiety
 Excited
to be off therapy
 Concerns
 Vigilant
re: unprotected now that therapy is over
for disease symptoms
 Uncertainty
 Uncertain
of what the future holds
how to manage everyday life.
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Questions Regarding Transitions in The
Pediatric Oncology Population
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What information do parents need as their child completes
therapy?
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Who should provide the education needed?

What format should the information be presented?

What is the best time to receive this information?
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Examine the Informational Needs of Parent
as Their Child Completes Therapy
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Focus groups with parents who had children complete
therapy one year prior to the study
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Each session was lead by a nurse practitioner utilizing a set
of questions about concerns, fears and information that
parent wanted as their child completed therapy.

Parents asked questions of each other and the NP leading the
group.
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Informational Needs

How to manage the immediate off therapy issues: fevers,
exposures.

How to return to “normal” life post treatment.

When to turn to the pediatrician vs. oncology
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Booklet
 Information
about the immediate off
therapy period
 How
to manage fevers, chicken pox etc.
 Understanding
received
the treatment their child
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Off Therapy Worries and Needs

Parents worry: disease returning
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Interpreting symptoms in their child
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Education individualized to their child’s treatment
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Remain connected to primary oncology provider
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Not sure they were ready to hear all about survivorship early
into the off treatment period
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Post-Treatment Period:>1 year to
Survivorship

Usually a quieter time
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Life is taking on post treatment meaning
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Follow up care is surveillance based
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Concerns begin to turn to long term issues

Still anxious and worries about health and discerning what is
a problem vs. usual childhood issue
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Transition to Survivorship Care

Varying years off therapy, but transition will occur

Child is usually doing well

Family and child adjust to a new care giving team
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Somewhat apprehensive about leaving primary oncology
care provider
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Survivorship
 Comprehensive
care
 Care
focuses on health promotion
and maintenance
 Creating
risk profile
 Educating
the family and survivor
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What are Late Effects?
 Persistent
and adverse changes that
are directly related to:
 Disease process
 Treatment process
 Both
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Clinically Obvious Effects
Functional disturbances that
interfere with activities of daily
living.
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Clinically Subtle Effects
Effects that are apparent only
to the trained observer.
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Sub-Clinical Effects
Effects detectable by laboratory
screening or radiographic imaging
techniques.
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Factors Influencing Late Effects
 Age:
may influence the effects of therapy ie:
cns xrt and cognitive changes.
 Pre-existing
co-morbidities
 Physiological
 Psychological
 Developmental
stage of the survivor: for
psychosocial impact, this may influence the
effects.
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Late Complications of Childhood
Cancer Therapy

Growth and Development


linear growth


intellectual function
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
sexual maturation

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Vital Organ Function
Reproduction

Second Neoplasms

fertility


cardiac
musculoskeletal
benign
malignant
Psychosocial adjustment
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Neuro-cognitive Outcomes
 Combination
Therapy
 Radiation
 Chemotherapy
 Surgery
 Age
at time of treatment
 Younger
> negative effect
 Diagnosis
 CNS
disease involvement
 Radiation therapy
 Intrathecals
 High Dose MTX
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Neurocognitive Late Effects
Learning
disabilities
Developmental delay
Attention/organizational deficits
Slower processing speed
Fine motor coordination difficulties
Leukoencephalopathy
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Prevention of Cognitive Dysfunction
 Eliminate

or reduce cranial irradiation
involved field, IMRT
 Substitute
 Avoid
chemotherapy with CNS penetration
parenteral methotrexate after radiation
 Monitor
educational/work performance
 Provide
early intervention
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Endocrine Effects
Hypothalamic
Gonadal
Thyroid
Adrenals
pituitary axis
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Growth Retardation
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Ovarian Dysfunction


Radiation: Abdomen or flank
 4-12 Gy
Chemotherapy:
 Cyclophosphamide
 Ifosfamide
 Procarbazine
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Age Related: puberty
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Screening:
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LH, FSH, Estradiol
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Tanner Stage
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Basal Body Temperature
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Testis Dysfunction
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Sperm Cell damage
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Leydig Cell damage
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Radiation > 1-6Gy
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Radiation >24Gy
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CPM
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CPM
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Procarbazine

Etoposide
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Ifosfamide

>6 cycles MOPP

Orchiectomy

Orchiectomy
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Cardiac Late Effects
 Anthracyclines




Gender
Age
Dose
Latency
 Radiation:


Cardiomyopathy
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Ventricular dysfunction

Pericarditis

Arrythmias

Pericardial damage

Valvular damage

CAD
> 25-30 Gy
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Cardiac Risk Factors

Hyperlipidemia
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Hypertension

Diabetes
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Smoking
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Excessive alcohol
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Isometric exercise (afterload issues and prolonged Qtc.)
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Musculoskeletal Late Effects

Radiation

> 20 Gy

muscular, bone and soft
tissue hypoplasia

spinal abnormalities

Osteronecrosis (AVN)

decreased sitting height

SCFE

Length discrepancies

SCFE

Steroids
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Musculoskeletal Late Effects
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Screening
 ROM
 Pain evaluation
 Sitting and standing heights
 Spine exam
 Appropriate x-rays
 Measurements of irradiated
and non- irradiated areas
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Interventions

exercise

estrogen replacement

orthopedic referral
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Factors Predisposing to Second
Malignancies
 Genetic
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
Conditions
Li-Fraumeni Syndrome
BRAC-1, BRAC-2
 Treatment
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Radiation: high dose
Chemotherapy
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
alkylators,
epipodophyllotoxins
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Psychosocial Late Effects
“The occurrence of cancer and one’s perception of
and response to that event, becomes a marker in the
individual’s life- separating the survivor’s life into two
parts- before and after cancer. As a division point in
life, it causes many survivors to revisit the meaning
and purpose of their lives.”
Seaburn, et al,. 1992
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Psychosocial Research Conclusion
1980’s
 Overall
picture of normal
adjustment
 Evidence
of psychological
difficulties (sub-clinical
anxiety/depression)
 Subset
of survivors with
significant problems
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Psychosocial Effects
 Fear
of recurrence
 Sense
of physical damage
 Anxiety
 Post-Traumatic
Stress Disorder
 Financial/employment/school-related
 Interpersonal



issues
Social well-being/re-entry
Intimacy issues
Sexual functioning
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Posttraumatic Stress Disorder:
1990’s
Posttraumatic stress disorder is defined as the
development of characteristic symptoms
following exposure to a psychologically
distressing event… that involved actual or
threatened death, serious injury, or threat to
physical integrity of self or others. The DSMIV manual includes the diagnosis with a life
threatening illness or learning that one’s child
has a life threatening illness as part of the
criteria.
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Why is Cancer Traumatic ?
 Repeated
 Life
invasive distressing procedures
threat
 Feelings
of helplessness
 Disruption
to individuals and families
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Why is Survivorship Traumatic?
 Continued
health vigilance and studies
(trigger distress)
 Emergence
of late effects
 Understanding
 Treatment
future medical vulnerabilities
related losses (fertility)
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PTSD Symptoms
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Recurrent intrusive memories
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Excessive distress when reminded of experience
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Hyper-vigilance for threat
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Irritability
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Panic attacks
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Avoidance of traumatic reminders
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Reckless behavior
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Regressive dependency
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Affective blunting/numbing
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Sense of Isolation
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PTSD and Survivorship
 PTSD
paradigm applied to adolescent and
young adult survivors of childhood cancer.
 YAS
experienced stress at the levels higher than
mothers of survivors from previous studies.
 More significant were those survivors who
experienced symptoms of re-experiencing and
avoidance
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Recurrent intrusive memories
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Excessive distress when reminded of experience
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Avoidance of traumatic reminders
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PTSD and Survivorship
 PTSD:
 Recurrent
intrusive memories
 Excessive distress when reminded of
experience
 Avoidance of traumatic reminders
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Positive Psychosocial Late Effects
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Greater appreciation for life
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Increased life satisfaction
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Renewed spirituality or religiosity
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Improved self-acceptance & self-awareness
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Strengthened relationships with significant others
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Increased ability to cope with adversity
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Present-centered awareness
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Post Traumatic Growth
 Young
adult survivors may also experience positive benefits as
a result of their cancer experience.
 PTG
is the process of applying positive interpretations and
finding meaning in a traumatic event.
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Enhanced coping abilities and motivation
may facilitate positive changes related to self-concept, relationships, and
life philosophy.
one study with adolescents found that the majority of adolescents and their
parents identified positive consequences as a result of their cancer in the
domains of self, relationships, and future plans
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Successful Survivorship

Integrating the cancer event
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Achieving a sense of well-being and peace
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purpose & meaning of one’s life
Finding meaning in the illness experience
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personal story
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Reduction in Psychosocial Morbidity
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Individual and group support during therapy
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Incorporate family members in education and
counseling
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Identify families at high risk requiring additional
intervention
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Continue support after completion of therapy
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Comprehensive Care
“Comprehensive care of the individual
with cancer demands that the same
expertise, energy, empathy, and support
that were provided during the crisis of
diagnosis and treatment are provided
throughout survivorship.”
Harpham, W.(1999) Late effects of Cancer therapy. In Principles
and Practice of Supportive Oncology.
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Interventions to Reduce the Morbidity
of Late Effects
 Comprehensive
 Health
health care
education; nutrition counseling
 Reproductive
counseling
 Psychosocial
support
 Early
detection of problems to decrease full
negative impact
 Health
maintenance and promotion
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Goals for Follow-up Care

Education
 Treatment
 Risk factors
 Surveillance
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Surveillance
 Early detection of problems
 Develop Individual Risk Profile
 Anticipatory guidance
 Modifiable risk factors/Control
 Primary prevention
 Secondary prevention
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Empowerment/Advocacy
 Education
 Awareness
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Transitional Needs
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Develop Individual Risk Profile
 Clinical Visit
 Cancer
diagnosis and treatment
 Complications during treatment
 Post-treatment complications
 Family history
 Current problems and medications
 Physical examination findings
 Labs and scans to date
 Health maintenance/screening behaviors

modifiable risk factors
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Assess Modifiable Risk Factors
 Primary
prevention
 diet
 exercise
 tobacco
use
 alcohol
 rest
 sunscreen
use/safety
 environmental/industrial exposures
 sexual practices
 hormone exposure
 health maintenance
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Assess Modifiable Risk Factors
 Secondary
 Breast
prevention
Self Examination (BSE)
 Testicular Self Examination (TSE)
 mammography
 skin examination
 PSA
 colonoscopy
 DEXA scan (Bone Mineral Density)
 other screening tests
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Survivor Intervention to Reduce
Late Effects
 Health
education re: exercise, diet, sun,
smoking cessation
 Reproductive
counseling
 Psychosocial
support
 Education
regarding previous disease
history
 Discussion
treatment
of risks associated with
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Provider Education to Reduce
Late Effects
 Increase
knowledge of late effects of
cancer therapy
 Improve
ability to recognize and treat
sub-clinical late effects
 Detect
second cancers early
 Screening
of high risk patients for treatment
associated cancers
 Counseling of survivors with genetic
predisposition
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Transitions

Time of diagnosis

Treatment

Completion of treatment

Early survivorship

Long term survivorship
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Transition to adult health care system
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Transition Issues
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Barriers
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Insurance
Fear of changing providers
Locating knowledgeable providers
Locating providers willing to care for survivors
Loosing contact with the survivors
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Transitional Needs

Aging population requiring ongoing surveillance
and education
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Information re: development of problems in 4th
and 5th decades of life are imperative
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Qualified health care providers are limited
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Transition Needs

Aging population requiring ongoing surveillance and
education
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Information re: development of problems in 4th and 5th
decades of life are imperative
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Qualified health care providers are limited
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The Science and Art of
Cancer Survivorship Care
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The Science:
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Identify known risk factors
established criteria to evaluate survivors for physical and
psychological late effects
The Art:
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

a balanced approach to care
provide information to empower
focus on modifiable risk factors
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“Cure is Not Enough”
The greatest threat to a
survivors well being is lack
of information
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The Science and Art of
Cancer Survivorship Care
The Science:


Identify known risk factors
Established criteria to evaluate survivors for physical and
psychological late effects
The Art:



Balanced approach to care
Provide information to empower
Focus on modifiable risk factors