i survived cancer, but school is killing me · •brain tumor patients: treatment (surgery, chemo,...
TRANSCRIPT
I SURVIVED CANCER, BUT SCHOOL IS KILLING ME
ANNE MAUCK, CPNP, CPON
NOVEMBER 2017
OBJECTIVES
• DESCRIBE SURVIVORSHIP
• DESCRIBE SPECIFIC CANCER TREATMENTS AS THEY RELATE TO SCHOOL FUNCTION
• DISCUSS THE IMPACT OF PHYSICAL, SOCIAL, EMOTIONAL AND COGNITIVE EFFECTS ON THE CHILD’S
LEVEL OF FUNCTION AT SCHOOL
• DESCRIBE CRITERIA USED TO DETERMINE WHEN A CHILD CAN TRANSITION BACK TO SCHOOL
• ADDRESS THE ROLE OF SCHOOL PERSONNEL IN ASSISTING WITH SUCCESSFUL TRANSITION BACK
TO SCHOOL
• DISCUSS THE IMPACT OF PHYSICAL, SOCIAL, EMOTIONAL AND COGNITIVE EFFECTS ON THE CHILD’S
LEVEL OF FUNCTION AT SCHOOL
THE GOOD NEWS
• 15000 CHILDREN AND YOUNG ADULTS AGES 0-19 IN US IN 2017
• 88 % (13200) SURVIVE
• 1975 OVER 50% SURVIVED OVER 5 YEARS
• 2014 419000 CHILDHOOD CANCER SURVIVORS 0-19 LIVING IN THE US
• EACH YEAR THE SURVIVAL RATE OF CHILDREN AND ADOLESCENTS INCREASES
BY APPROXIMATELY 0.9%
WHAT IS SURVIVORSHIP?
•FIVE YEARS FROM DIAGNOSIS AND 2 YEARS
OFF TREATMENT
THE BAD NEWS
• THERE IS A COST TO CURE
• PHYSICAL
• PSYCHO-SOCIAL
• NEUROCOGNITIVE DEFICITS
• ENDOCRINE
• REPRODUCTIVE ISSUES
• SECOND MALIGNANCY RISK
MORE BAD NEWS
• 2 OF EVERY 3 SURVIVORS HAVE AT LEAST 1 LATE EFFECT
• 1 OF EVERY 3 HAS 2 OR MORE LATE EFFECTS
• 1 OF 3 HAS A LATE EFFECT THAT AFFECTS QOL AND/OR MORTALITY
• INCIDENCE OF LATE EFFECTS INCREASE WITH AGE
• MAY TAKE DECADE OR MORE TO BE VISIBLE
THE TRUTH IS…
THE DIAGNOSIS OF CANCER IS DEVASTATING
RESEARCH FINDINGS
• CHILDHOOD CANCER SURVIVOR GROUP (CCSG)
• MULTIPLE STUDIES HAVE SHOWN THAT ADOLESCENT CCS HAVE HIGHER LEVELS OF SOCIAL
AND BEHAVIORAL PROBLEMS, ANXIETY, DEPRESSION, ATTENTION DEFICIT AND ANTI-SOCIAL
BEHAVIORS
• QUALITY OF LIFE: IS SIMILAR IN MOST GROUPS BUT LOWER IN CERTAIN CASES: FEMALE SEX,
BONE AND BRAIN CANCER, OLDER AGE AT DIAGNOSIS, LOW SELF-ESTEEM, FATIGUE,
DEMOGRAPHICS (LOW SES AND HISPANIC)
ACADEMICS AND BEYOND
• CCS HIGHER RISK FOR ACADEMIC PROBLEMS AND ADVERSE OUTCOMES
• UNEMPLOYMENT 20-25% HIGHER IN CCS WITH BRAIN TUMORS, WHO HAD
XRT, THOSE TREATED AT YOUNGER AGE, THOSE WITH CHRONIC MEDICAL
CONDITIONS
• SURVIVORS FACED MORE CHALLENGES WITH ROMANTIC RELATIONSHIPS THAN
SIBLINGS (OLDER AT DX, HIGHER LEVELS OF ANXIETY, HEAVILY TREATED)
WHO, WHAT , HOW?
• CHILD OR YAC WILL NEVER BE THE SAME
• FAMILY WILL NOT BE THE SAME – JUST ASK A SIBLING OR A PARENT
• FRIENDS MAY HAVE MOVED ON
• +/- LATE EFFECTS
• “NEW” NORMAL
WHAT IS NORMAL?
• GROWING AND DEVELOPING
• GOING TO SCHOOL
• LEARNING AND DOING
• SOCIALIZING: MAKING AND KEEPING FRIENDS
• BECOMING INDEPENDENT
• FEELING AND EMOTING
• MAKING MISTAKES
“NEW” NORMAL
• CHILD WILL BE COMPARED TO NORMS
• CHILD MAY COMPARE HERSELF/HIMSELF TO HIS PREVIOUS SELF
• CHILD MAY FEEL ISOLATED
• CHILD MAY HAVE FEARS OF THE NEXT STEP
TRANSITION BACK TO SCHOOL
• WHY IS THAT IMPORTANT?
• “NORMALIZE” A DIFFICULT EXPERIENCE
• MASTER EDUCATIONAL GOALS AND SOCIAL SKILLS
• IMPROVE QUALITY OF LIFE
• CCS HAVE A RANGE OF PROBLEMS THAT REQUIRE ONGOING
SUPPORT
• UNMET NEEDS WILL RESULT IN UNFAVORABLE OUTCOMES
THEY SURVIVED CANCER AND NOW COMES THE HARD
PART… RETURN TO SCHOOL
WHY DO WE DO IT?
•WE WANT SURVIVORS TO DO MORE THAN
SURVIVE… WE WANT THEM TO THRIVE!
ACUTE EFFECTS OF TREATMENT
• CHILDREN WHO ARE IN TREATMENT MAY LOOK AND ACT
DIFFERENTLY FROM THEIR PEERS
COMMON SIDE EFFECTS
• PHYSICAL CHANGES
• WEIGHT LOSS/GAIN
• FATIGUE OR LOW STAMINA
• “CLOUDY” THINKING
• GI EFFECTS
• FEVER/INFECTION/BRUISING/BLEEDING
• MOOD SWINGS
• GLASSES OR HEARING AIDS
PSYCHOSOCIAL
• FEELINGS OF SOCIAL ISOLATION, FEELING DIFFERENT, FEARFUL OF
RTS
• FEELINGS OF SADNESS, GRIEF, DISBELIEF, GUILT, ANGER OR WORRY
• POSITIVE SELF OUTLOOK, INCREASED MATURITY AND WIDE VIEW
OF THE LIVED “EXPERIENCE”
EVERYONE IS DIFFERENT
• THERE IS NOT A “NORMAL” RESPONSE TO
CANCER/TREATMENT
• EVERYONE WILL TRANSITION BACK TO SCHOOL IN A
DIFFERENT WAY AND NEEDS WILL VARY
WHAT IS A LATE EFFECT?
• SIDE EFFECT OR CONSEQUENCE OF CANCER OR ITS TREATMENT THAT USUALLY
DOES NOT OCCUR UNTIL AFTER TREATMENT HAS ENDED
• PHYSICAL OR PSYCHOSOCIAL
• ADVERSE EFFECTS THAT DOES NOT RESOLVE AFTER TREATMENT HAS ENDED
• NOTED DURING PERIODS OF GROWTH OR MATURATION OR NORMAL AGING
LATE EFFECTS
•PHYSICAL
•PSYCHOSOCIAL/EMOTIONAL
• EXISTING OR POTENTIAL RISK
INFLUENCING FACTORS
• AGE AT DIAGNOSIS
• UNDERLYING GENETICS
• TYPE OF CANCER AND LOCATION OF DISEASE (INCLUDING METS)
• TYPE OF TREATMENT
• CHEMOTHERAPY, SURGERY, RADIATION, BMT, BIOTHERAPY
INFLUENCING FACTORS
• COMPLICATIONS OF THERAPY
• PSYCHOSOCIAL SUPPORT DURING THERAPY
• HEALTH RELATED BEHAVIORS
• NEW STAGES OF DEVELOPMENT (PUBERTY)
• BODY CHANGES
• INDEPENDENCE VS OVERPROTECTION
POTENTIAL LATE EFFECTS
• NEUROCOGNITIVE
• AUDITORY
• VISUAL
• CARDIAC
• PULMONARY
• GI
• ENDOCRINE/REPRODUCTIVE
• SKIN
• GENITOURINARY
• MUSCULOSKELETAL
• SECOND MALIGNANCY
• PSYCHOSOCIAL
NEUROCOGNITIVE
• BRAIN TUMOR SURVIVORS
• LEUKEMIA
• LYMPHOMA
• NASOPHARYNGEAL CANCER
• CHILDREN WHO ARE LESS THAN 3 DURING TREATMENT
• CHILDREN WHO HAVE MISSED OPPORTUNITIES
NEUROCOGNITIVE
• BRAIN TUMOR PATIENTS: TREATMENT (SURGERY, CHEMO, XRT, BMT)
• TREATMENT CAN CAUSE SPECIFIC CHANGES IN THE BRAIN
• TREATMENT CAN CAUSE OTHER ISSUES (VISUAL, HEARING, MOTOR, COORDINATION DEFICITS)
• GLOBAL ISSUES INVOLVING COGNITION, SENSORY AND MOTOR SYSTEMS
• SOCIAL DEVELOPMENT CAN BE AFFECTED
• MISSED CUES
• IMMATURE FOR AGE
NEUROCOGNITIVE
• LEUKEMIA/LYMPHOMA
• HIGH DOSE METHOTREXATE (ALL)
• CRANIAL XRT (T CELL ALL)
• INTRATHECAL MTX (LEUKEMIA, NHL)
NEUROCOGNITIVE EFFECTS
• SHORT TERM MEMORY DEFICITS
• DIFFICULTY WITH WORD RETRIEVAL
• SLOWER THINKING AND PROCESSING SPEEDS
• POOR ORGANIZATIONAL SKILLS
• ATTENTION PROBLEMS (DISTRACTIBILITY AND POOR CONCENTRATION)
• DIFFICULTY WITH MULTI-TASKING
• STAMINA/FATIGUE
INTERVENTIONS
• NEUROPSYCHOLOGICAL TESTING BY A SPECIALIST
• SCHOOL EDUCATIONAL PLAN (504 OR IEP)
• MODIFICATIONS TO THE CURRICULUM
• TESTING WITHOUT TIMING
• LESS IS MORE
• ORAL EXAMS
AUDITORY ISSUES
• HIGH FREQUENCY HEARING LOSS
• ANY SOLID TUMOR THAT USES CARBOPLATIN OR CISPLATIN (50% WILL HAVE HEARING
DEFICIT)
• RADIATION TO THE BRAIN OR FACE
• CERTAIN ANTIBIOTICS (AMINOGLYCOSIDES: GENT, STREPTO, NEOMYCIN)
• COMMUNICATION DISORDERS
• MAY NEED SPEECH THERAPY
• ISOLATION AND INTERACTION WITH OTHERS CAN BE IMPAIRED
VISUAL ISSUES
• EARLY CATARACTS
• STEROIDS (ALL, BT)
• XRT TO HEAD, EYE, ORBIT, FACE, BRAIN
• BUSULFAN (BMT)
• PREFERENTIAL SEATING, SCRIBE, ORAL EXAMS
CARDIAC EFFECTS
• ANTHRACYCLINES (LIQUID AND SOLID TUMORS)
• DOSE DEPENDENT. MAXIMUM LIFETIME DOSES
• VALVE DAMAGE
• NARROWING OF BLOOD VESSELS
• HYPERLIPIDEMIA
• OBESITY
• WEIGHT LIFTING AND EXERCISE RESTRICTIONS OR ACCOMMODATIONS
PULMONARY EFFECTS
• PULMONARY FIBROSIS
• RESTRICTIVE/OBSTRUCTIVE LUNG DISEASE
• HIGH DOSE METHOTREXATE (LEUKEMIA, OSTEOSARCOMA)
• BLEOMYCIN (HOD, SARCOMA, TESTICULAR CA)
• BCNU (BRAIN OR BMT)
• XRT TO LUNGS (METS OR TBI)
• COUGH OR SOB
• EXERCISE RESTRICTIONS/ DISEASE PLAN
GASTROINTESTINAL EFFECTS
• ORGAN DAMAGE (XRT, ANTIMETABOLITES FOR ALL, AMD)
• LIVER, COLON
• HEPATITIS C
• DIARRHEA, CONSTIPATION, NAUSEA AND VOMITING
• BATHROOM PASS
• NURSE PASS
ENDOCRINE EFFECTS
• THYROID DYSFUNCTION
• XRT TO HEAD AND NECK (HOD, BT)
• GROWTH HORMONE DEFICIENCY
• BT – BUT WE WATCH GROWTH CAREFULLY
• ADRENAL INSUFFICIENCY
• BT
• FATIGUE
• MAY NEED PLACE TO NAP OR REST
SKIN
• PERMANENT HAIR LOSS
• SURGERY TO THE HEAD, SKULL
• XRT TO HEAD, FACE OR SKULL
• CAN WEAR A HAT OR WIG AND NOT BE ASKED TO REMOVE IT
• SKIN CHANGES (MOLES, DARK SPOTS, SCARS, DISFIGUREMENT)
KIDNEY/BLADDER
• KIDNEY TOXICITY
• CISPLATIN, CARBOPLATIN, IFOSFAMIDE, XRT (BT, SOLID TUMORS (OSTEO,
WILM'S, NB)
• SINGLE KIDNEY (WT)
• SPORTS, FEVER, WATER
• BLADDER FIBROSIS
• URGENCY, FREQUENCY
• BATHROOM PASS
MUSCULOSKELETAL
• HYPOPLASIA
• XRT (ASYMMETRY)
• SCOLIOSIS
• AMPUTATION
• DECREASED BONE GROWTH
• LEG LENGTH DISCREPANCY, FOOT DROP, BRACES
• AVN/OSTEOPOROSIS
• STEROIDS, MTX
MSK INTERVENTIONS
• EXERCISE INTOLERANCE
• NEED ASSISTANCE WITH BOOKS, STAIRS, MOBILITY (CRUTCHES, LIMB SALVAGE,
WHEEL CHAIR, WALKER)
• BODY IMAGE (PSYCHOSOCIAL) LOW SELF ESTEEM
• FINE MOTOR SKILL DEFICIT – OT, PT
• LIMB SALVAGE: FUTURE SURGERIES
PSYCHOSOCIAL EFFECTS
• FEAR AND ANXIETY
• ISOLATION
• DECREASED COPING
• LOW SELF ESTEEM AND LACK OF CONFIDENCE
• DEPRESSION
• PTSD
• **RELATED TO PARENTS AND PHYSICAL
LIMITATIONS
• INTACT COPING STRATEGIES
• SENSE OF SELF
• BENEFIT FINDING
• CONFIDENCE AND SELF ESTEEM
SCHOOL REENTRY
• WHY IS THIS IMPORTANT?
• NORMALIZE A DIFFICULT EXPERIENCE
• MASTER EDUCATIONAL GOALS AND SOCIAL SKILLS
• SMOOTH TRANSITION POSITIVELY IMPACTS QOL FOR
CHILD/YOUNG ADULT AND FAMILY
RETURN TO SCHOOL: WHEN?
•AS SOON AS POSSIBLE
•NEGOTIATED BETWEEN CHILD, PARENT,
MEDICAL TEAM INCLUDING THE EDUCATIONAL
CONSULTANT AND SCHOOL TEAM
RETURN TO SCHOOL CONSIDERATIONS
• WHAT ARE WE TRYING TO ACCOMPLISH?
• WHAT CAN THE CHILD HANDLE?
• WHAT ARE THE SHORT AND LONG TERM GOALS?
• ANTICIPATED ABSENCES?
• PHYSICAL LIMITATIONS?
• ESL?
• COMMUNICABLE DISEASE PLAN?
• IEP OR 504?
FURTHER CONSIDERATIONS
• START SLOWLY AND ADJUST AS NEEDED
• FREQUENT COMMUNICATION WITH SCHOOL AND FAMILY
• INVOLVE ALMA MORGAN, EDUCATIONAL CONSULTANT
• TRY NOT TO LABEL…STAY POSITIVE ABOUT WHAT THE CHILD CAN
DO!
BEST TRANSITION
•COMMUNICATION
•COMMUNICATION
•COMMUNICATION
SCHOOL HEALTH NURSES AS ADVOCATES
•KNOWLEDGE
•RAPPORT WITH CHILD AND FAMILY
• LIAISON BETWEEN SCHOOL AND HEALTH CARE
TEAM
QUESTIONS?
THANK YOU FOR LISTENING!