I Survived Cancer, But School is Killing me · •brain tumor patients: treatment (surgery, chemo,...

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!