I SURVIVED CANCER, BUT SCHOOL IS KILLING ME ANNE MAUCK, CPNP, CPON NOVEMBER 2017

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1 I SURVIVED CANCER, BUT SCHOOL IS KILLING ME ANNE MAUCK, CPNP, CPON NOVEMBER 2017

2 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

3 THE GOOD NEWS CHILDREN AND YOUNG ADULTS AGES 0-19 IN US IN % (13200) SURVIVE 1975 OVER 50% SURVIVED OVER 5 YEARS CHILDHOOD CANCER SURVIVORS 0-19 LIVING IN THE US EACH YEAR THE SURVIVAL RATE OF CHILDREN AND ADOLESCENTS INCREASES BY APPROXIMATELY 0.9%

4 WHAT IS SURVIVORSHIP? FIVE YEARS FROM DIAGNOSIS AND 2 YEARS OFF TREATMENT

5 THE BAD NEWS THERE IS A COST TO CURE PHYSICAL PSYCHO-SOCIAL NEUROCOGNITIVE DEFICITS ENDOCRINE REPRODUCTIVE ISSUES SECOND MALIGNANCY RISK

6 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

7 THE TRUTH IS THE DIAGNOSIS OF CANCER IS DEVASTATING

8 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)

9 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)

10 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

11 WHAT IS NORMAL? GROWING AND DEVELOPING GOING TO SCHOOL LEARNING AND DOING SOCIALIZING: MAKING AND KEEPING FRIENDS BECOMING INDEPENDENT FEELING AND EMOTING MAKING MISTAKES

12 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

13 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

14 THEY SURVIVED CANCER AND NOW COMES THE HARD PART RETURN TO SCHOOL

15 WHY DO WE DO IT? WE WANT SURVIVORS TO DO MORE THAN SURVIVE WE WANT THEM TO THRIVE!

16 ACUTE EFFECTS OF TREATMENT CHILDREN WHO ARE IN TREATMENT MAY LOOK AND ACT DIFFERENTLY FROM THEIR PEERS

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19 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

20 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

21 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

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24 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

25 LATE EFFECTS PHYSICAL PSYCHOSOCIAL/EMOTIONAL EXISTING OR POTENTIAL RISK

26 INFLUENCING FACTORS AGE AT DIAGNOSIS UNDERLYING GENETICS TYPE OF CANCER AND LOCATION OF DISEASE (INCLUDING METS) TYPE OF TREATMENT CHEMOTHERAPY, SURGERY, RADIATION, BMT, BIOTHERAPY

27 INFLUENCING FACTORS COMPLICATIONS OF THERAPY PSYCHOSOCIAL SUPPORT DURING THERAPY HEALTH RELATED BEHAVIORS NEW STAGES OF DEVELOPMENT (PUBERTY) BODY CHANGES INDEPENDENCE VS OVERPROTECTION

28 POTENTIAL LATE EFFECTS NEUROCOGNITIVE AUDITORY VISUAL CARDIAC PULMONARY GI ENDOCRINE/REPRODUCTIVE SKIN GENITOURINARY MUSCULOSKELETAL SECOND MALIGNANCY PSYCHOSOCIAL

29 NEUROCOGNITIVE BRAIN TUMOR SURVIVORS LEUKEMIA LYMPHOMA NASOPHARYNGEAL CANCER CHILDREN WHO ARE LESS THAN 3 DURING TREATMENT CHILDREN WHO HAVE MISSED OPPORTUNITIES

30 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

31 NEUROCOGNITIVE LEUKEMIA/LYMPHOMA HIGH DOSE METHOTREXATE (ALL) CRANIAL XRT (T CELL ALL) INTRATHECAL MTX (LEUKEMIA, NHL)

32 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

33 INTERVENTIONS NEUROPSYCHOLOGICAL TESTING BY A SPECIALIST SCHOOL EDUCATIONAL PLAN (504 OR IEP) MODIFICATIONS TO THE CURRICULUM TESTING WITHOUT TIMING LESS IS MORE ORAL EXAMS

34 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

35 VISUAL ISSUES EARLY CATARACTS STEROIDS (ALL, BT) XRT TO HEAD, EYE, ORBIT, FACE, BRAIN BUSULFAN (BMT) PREFERENTIAL SEATING, SCRIBE, ORAL EXAMS

36 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

37 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

38 GASTROINTESTINAL EFFECTS ORGAN DAMAGE (XRT, ANTIMETABOLITES FOR ALL, AMD) LIVER, COLON HEPATITIS C DIARRHEA, CONSTIPATION, NAUSEA AND VOMITING BATHROOM PASS NURSE PASS

39 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

40 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)

41 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

42 MUSCULOSKELETAL HYPOPLASIA XRT (ASYMMETRY) SCOLIOSIS AMPUTATION DECREASED BONE GROWTH LEG LENGTH DISCREPANCY, FOOT DROP, BRACES AVN/OSTEOPOROSIS STEROIDS, MTX

43 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

44 PSYCHOSOCIAL EFFECTS FEAR AND ANXIETY ISOLATION DECREASED COPING LOW SELF ESTEEM AND LACK OF CONFIDENCE DEPRESSION INTACT COPING STRATEGIES SENSE OF SELF BENEFIT FINDING CONFIDENCE AND SELF ESTEEM PTSD **RELATED TO PARENTS AND PHYSICAL LIMITATIONS

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50 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

51 RETURN TO SCHOOL: WHEN? AS SOON AS POSSIBLE NEGOTIATED BETWEEN CHILD, PARENT, MEDICAL TEAM INCLUDING THE EDUCATIONAL CONSULTANT AND SCHOOL TEAM

52 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?

53 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!

54 BEST TRANSITION COMMUNICATION COMMUNICATION COMMUNICATION

55 SCHOOL HEALTH NURSES AS ADVOCATES KNOWLEDGE RAPPORT WITH CHILD AND FAMILY LIAISON BETWEEN SCHOOL AND HEALTH CARE TEAM

56 QUESTIONS? THANK YOU FOR LISTENING!