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 Follow-up Care From Pediatric----Adult Health Care System
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Completion Of Treatment Both celebration and anxiety Excited to be off therapy Concerns re: unprotected now that therapy is over Vigilant for disease symptoms Uncertainty of what the future holds Uncertain how to manage everyday life.
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Questions Regarding Transitions in The Pediatric Oncology Population What information do parents need as their child completes therapy?
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 Focus groups with parents who had children complete therapy one year prior to the study 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 the treatment their child received
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Off Therapy Worries and Needs
Parents worry: disease returning Interpreting symptoms in their child Education individualized to their child’s treatment Remain connected to primary oncology provider 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 Life is taking on post treatment meaning Follow up care is surveillance based 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 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 sexual maturation Reproduction fertility Vital Organ Function cardiac musculoskeletal Second Neoplasms 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 chemotherapy with CNS penetration Avoid parenteral methotrexate after radiation Monitor educational/work performance Provide early intervention
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Endocrine Effects
Hypothalamic pituitary axis Gonadal Thyroid Adrenals
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Growth Retardation
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Ovarian Dysfunction
Radiation: Abdomen or flank
4-12 Gy
Chemotherapy:
Cyclophosphamide
Ifosfamide
Procarbazine
Age Related: puberty
Screening:
LH, FSH, Estradiol
Tanner Stage
Basal Body Temperature
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Testis Dysfunction
Sperm Cell damage Radiation > 1-6Gy CPM Procarbazine Ifosfamide Orchiectomy Leydig Cell damage Radiation >24Gy CPM Etoposide >6 cycles MOPP Orchiectomy
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Cardiac Late Effects
Anthracyclines Gender Age Dose Latency Radiation: > 25-30 Gy Cardiomyopathy Ventricular dysfunction Pericarditis Arrythmias Pericardial damage Valvular damage CAD
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Cardiac Risk Factors Hyperlipidemia Hypertension Diabetes Smoking Excessive alcohol 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 decreased sitting height Length discrepancies SCFE Steroids Osteronecrosis (AVN) SCFE
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Musculoskeletal Late Effects Screening ROM Pain evaluation Sitting and standing heights Spine exam Appropriate x-rays Measurements of irradiated and non- irradiated areas Interventions exercise estrogen replacement orthopedic referral
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Factors Predisposing to Second Malignancies Genetic Conditions Li-Fraumeni Syndrome BRAC-1, BRAC-2 Treatment Radiation: high dose Chemotherapy 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
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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 DSM IV 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 invasive distressing procedures Life 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 future medical vulnerabilities Treatment related losses (fertility)
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PTSD Symptoms
Recurrent intrusive memories Excessive distress when reminded of experience Hyper-vigilance for threat Irritability Panic attacks Avoidance of traumatic reminders Reckless behavior Regressive dependency Affective blunting/numbing 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 Recurrent intrusive memories Excessive distress when reminded of experience 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
Greater appreciation for life Increased life satisfaction Renewed spirituality or religiosity Improved self-acceptance & self-awareness Strengthened relationships with significant others Increased ability to cope with adversity 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.
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 Achieving a sense of well-being and peace purpose & meaning of one’s life Finding meaning in the illness experience personal story
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Reduction in Psychosocial Morbidity
Individual and group support during therapy Incorporate family members in education and counseling Identify families at high risk requiring additional intervention 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 care Health 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 Surveillance Early detection of problems Develop Individual Risk Profile Anticipatory guidance Modifiable risk factors/Control Primary prevention Secondary prevention Empowerment/Advocacy Education Awareness 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 prevention Breast 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 of risks associated with treatment
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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 Transition to adult health care system
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Transition Issues
Barriers 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 Information re: development of problems in 4 th and 5 th decades of life are imperative Qualified health care providers are limited
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Transition Needs
Aging population requiring ongoing surveillance and education Information re: development of problems in 4 th decades of life are imperative and 5 th Qualified health care providers are limited
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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: a balanced approach to care provide information to empower focus on modifiable risk factors
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“
Cure is Not Enough
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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