5/2/2016. Caring for Adolescents and Young Adults with Cancer. Objectives. AYA Oncology. Cancer Incidence: SEER 18, , ages

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1 Objectives Caring for Adolescents and Young Adults with Cancer Oncology Nursing: Planting Seeds of Hope and Healing May 4 th, 2016 Describe distinctive aspects of disease biology in AYA population List common toxicities of AYA with cancer Describe psychosocial considerations for the AYA population Summarize AYA cancer survivorship care Mary Langevin APRN CNP CPON AYA Oncology People with cancer ages A subgroup of oncology patients with specific challenges and needs, both medical and psychosocial 70,000 new AYA oncology diagnosis annually Seven times more than those less than 15 years old 2014: 5330 patients ages 15-19: 600 will die from their disease Increasing age associated with poorer prognosis Leading disease related cause of death In general an underserved population From: Cancer in Adolescents and Young Adults: A Narrative Review of the Current Status and a View of the Future JAMA Pediatr. Published online March 21, doi: /jamapediatrics Table Title: Incidence of All Invasive Cancer by Age a Date 4 of download: /20/2016 Copyright 2016 American Medical Association. All rights reserved. Cancer Incidence: SEER 18, , ages

2 Survival 5- Year Survival Outcomes by Age 1-10 years old 94% years old 84.7% years old 75.9% For example, the 5-year survival rate for acute lymphoblastic leukemia in was 91 percent for children younger than 15 years compared with 78 percent for adolescents ages 15 to 19 years. Adolescents and young adults with acute lymphoblastic leukemia may have better outcomes if they are treated with pediatric treatment regimens than if they receive adult treatment regimens. The improvement in 5-year survival rates for 15- to 19-year-olds with acute lymphoblastic leukemia from approximately 50 percent in the early 1990s to 78 percent in may reflect greater use of these pediatric treatment regimens Source: SEER 13 Areas, Survival Rates for Leukemia Children with ALL 90% Children with AML 66% AYA with ALL 52% AYA with AML 50% AYA Factors involved for poorer outcomes Low rate of participation in clinical trials: <2% ALL in 2003 Difference in disease biology Lack of consistency in treatment approaches Poor adherence to treatment plan Different metabolism of chemotherapy Co morbidities that limit treatment Delays in diagnosis Lack of insurance coverage No medical home Barr et al. (2016). Cancer in Adolescents and Young Adults. JAMA Pediatrics From: Cancer in Adolescents and Young Adults: A Narrative Review of the Current Status and a View of the Future JAMA Pediatr. Published online March 21, doi: /jamapediatrics Figure Legend: Five-Year Relative Survival by Age and Calendar Year of Diagnosis, Relative survivals in individuals younger than 15 years catches up with and thereafter exceeds that in individuals aged 15 to 39 years. Adjusting for human immunodeficiency virus related cancer in men (Kaposi sarcoma and non-hodgkin lymphoma) and thyroid cancer in women. Challenges for AYA Oncology Patients Delay in diagnosis Financial issues before, during and after treatment Location of care Adherence to therapy Need for support Rehab and exercise Sexuality and body image Oncofertility Transition of care Palliative and end of life care Cancer in Adolescents and Young Adults- JAMA Pediatrics March 31 st, 2016 Date 11 of download: /20/2016 Copyright 2016 American Medical Association. All rights reserved

3 Leukemia in AYA Most common cancer birth- 21 Leading cause of cancer death in AYA population Increasing incidence since 1975 Age is most important prognostic factor Survival decreases at age 15 Unfavorable genetics more common in AYA Prolonged chemotherapy essential to survival 59% of all ALL relapses due to non adherence Age over 12 associated lower oral chemo adherence Differences Between Pediatric and AYA ALL Pediatric Favorable genetics for ALL survival TEL-AML1 50% Ph-like gene expression(unfavorable) 13% AYA Favorable genetics 10% Ph-like gene expression 21% adolescents 27% young adults Combination BCR-ABL1 and PH-like -60% ALL Smith et al.(2016). Next Steps for Adolescent and Young Adult Oncology: An update on progress recommendations for the future. Cancer Treatment of ALL for AYA- SEER Data Better outcomes when treated on pediatric protocols Adult protocols EFS 38% at 6 years Pediatric protocols EFS at 6 years 64% ( vs >75% for ages 0-10) Common toxicities AYA ALL Steroid related osteonecrosis ( AVN) Loss of blood supply to bone Hips, knees, shoulders, ankles Dexamethasone 6 x more cytotoxic- higher incidence of AVN More common in year olds Prednisone if older than 10 Interventions: discontinue steroids, PT, joint replacement, bisphosphonate therapy- diminishing pain, improving mobility, and lowering the incidence of articular collapse Toxicities- cont. Asparaginase related pancreatitis and thromboembolism Baseline Lipase Symptoms of anorexia Abdominal pain Delay placement of central line DVT prophylaxis Toxicities- cont. Obesity Older age- risk factor 68% survival in obese pts compared to 80% non obese Difference in drug distribution Delayed clearance Relationship between drug metabolism and BMI Late affect is increased risk for obesity Weight gain in Induction Interventions: nutrition counseling, exercise, sleep, weight loss

4 Toxicities- cont Hyperbilirubinemia and Transaminitis Fatty liver More common for obese females Recommend screening for hepatitis CMV screening Toxicities- cont Neuropathy/ Pain Partner with pain team Regular physical therapy Early use of orthotics Magnesium Maintain or increase physical activity Toxicities- cont Hyperglycemia Risk factors: older age, obesity, family history Poor wound healing Interventions: nutrition counseling, exercise, no IV glucose Medication Toxicities- cont Infection Risk and Mortality Tumor lysis Death due to infection Grade 4 and 5 infections more common Interventions: early recognition of fever, aggressive treatment of infection, Antibiotic and antifungal prophylaxis Curran, E., & Stock, W. (2015). How I treat acute lymphoblastic leukemia in older adolescents and young adults. Blood, 125: Future of AYA Leukemia More targeted therapies Genome sequencing to look for actionable targets Therapies that target caner cells and decrease toxicities NCCN Clinical Practice Guidelines-2016 Supportive Care Guidelines Comprehensive assessment Age Appropriate information Fertility/endocrine Considerations Psychosocial assessment Genetic counseling Treatment related issues Survivorship End of Life

5 NCCN Guidelines and Considerations for Fertility Preservation Fertility preservation and sexual health Risks of treatment plan on fertility Contraception during treatment Male risk for azoospermia Female risk of ovarian failure or early menopause Referral for fertility preservation within 24 hours Mental health professional be available to help with decisions Why discuss at diagnosis? Many adult survivors of childhood cancer feel that fertility preservation and the ability to have a future family are important. AYA Patients and families may not be aware that there are options for preserving fertility when diagnosed with cancer. AYA Patients t may be focused on cancer treatment t t and immediate health. Many AYA Patients and parents may feel uncomfortable discussing issues of reproduction with their children. Understanding that there may be fertility preservation options available and referring AYA patients to reproductive specialists can improve their future quality of life. Who discusses at diagnosis? Fertility Team Primary Oncologist/NP RN With/without parents present Fertility Specialist Factors that impact fertility Type and dose (amount) of chemotherapy Dose and location of radiation therapy Site of surgery Puberty status (infertility may be less likely if treatment is before puberty) Fertility Preservation Options for Males

6 NCCN Guidelines Fertility Considerations for AYA Males Discuss the possibility of sperm banking Suggest a local sperm bank Females Discuss embryo or oocyte preservation Can treatment be delayed? Oophoropexy- Can ovaries be moved from radiation field Menstrual suppression 2013 Fertility Preservation Guidelines: American Society of Clinical Oncology Discuss fertility preservation with all patients Refer to reproductive medicine specialist Address fertility preservation at diagnosis Document discussion Discuss impact of treatment on fertility Encourage registries and clinical studies Use established methods for children (sperm banking and oocyte preservation) Inform of investigational methods Refer for experimental protocols if available Barriers to discussion J Cancer Surviv Jun;1(2): doi: /s Discussion of fertility preservation with newly diagnosed patients: oncologists' views. Quinn GP 1, Vadaparampil ST, Gwede CK, Miree C, King LM, Clayton HB, Wilson C, Munster P. Insufficient time Data regarding risk to fertility insufficient Unrecognized importance of fertility to patients Belief that cost is prohibitive Prognosis is poor Emotional discomfort with the subject Ways to start the discussion Cancer and cancer treatment may affect your fertility. Based on your treatment plan, his/her risk of infertility is [high, moderate, low]. There are options to try to preserve fertility before he/she begins cancer treatment. Cancer, cancer treatment, or fertility preservation procedures will not harm your future children. Fertility preservation procedures do not appear to increase the risk of cancer recurrence. I can refer you to a fertility preservation specialist if you would like to discuss your options further. SaveMyFertility.org APHON Fertility Preservation Options Recommendations for Males Sperm Banking-Strong recommendation Sperm banking via alternative methods- Strong recommendation Testicular Tissue cryopreservation- only option for prepubertal males, experimental, must be IRB approved Fertility Preservation Methods for Females Oocyte cryopreservation Embryo cryopreservation Ovarian transposition Radiation shielding Menstrual suppression-conflicting data Ovarian tissue banking-experimental Reported live births Fernbach et al. Journal of Pediatric Oncology Nursing, May,

7 Fertility Preservation Options for Femalessavemyfertiltiy.com APHON Guidelines and Recommendations- Females Embryo/oocyte preservation-moderate, strong recommendation Oophoropexy prior to radiation-moderate quality. recommended Ovarian tissue preservation- low quality, only as a study Hormone suppression- low quality, no recommendation Fernbach et al. Journal of Pediatric Oncology Nursing, May, Survivorship CCSS Lancet Oncol Aug;14(9): doi: /S (13) Epub 2013 Jul 13. Infertility, infertility treatment, and achievement of pregnancy in female survivors of childhood cancer: a report from the Childhood Cancer Survivor Study cohort. Barton SE 1, Najita JS, Ginsburg ES, Leisenring WM, Stovall M, Weathers RE, Sklar CA, Robison LL, Diller L. Cumulative incidence of acute ovarian failure- 6.3% Alkylating agents + abdominal pelvic radiation highest risk Premature menopause- 8% Increased risk of infertility compared to siblings in both men and women Risk depends on exposure to alkylating agents and pelvic radiation Impact of Cancer Therapies Survivorship 62% of childhood cancer survivors one chronic condition 30% significant fatigue 21% chronic pain 24% 14 or more days of poor physical health in the previous month Young survivors (AYA) have different needs than older survivors Counseling and Psychological Support Attention to sexual health Help with managing relationships Treating depression and anxiety Help with self esteem and body image Help with managing g fear of relapse Neuropsychological assessment and treatment Galan et al. (2016). What are the needs of adolescents and young adults after cancer treatment? European Journal of Cancer Care

8 Developing an Adaptive Social Network Self help groups Healthy friendships Meeting other survivors Returning to peer group Feeling normal Financial Support Help with education Help with assessing disability qualifications Financing treatments Maintain Healthy Lifestyle Advice for healthy habits Preventing second cancers and late effects Diet Exercise Sleep Safe sex Needs Specific to Post Cancer Treatment Survivorship clinic Treatment summaries Physical exams Surveillance Rehab Differences Between Needs of AYA and Adult Survivors- Galan et al., (2016). What are the needs of adolescents and young adults after cancer treatment. European Journal of Cancer Care, DOI:10.111/ccc AYA Survivors Help with self esteem Feel good at an emotional level Social and family support Healthy lifestyle Support for return to normal life Adult Survivors Having psychological support Participating in a social network Medical exams and specialized care Financial support Care for caregivers and family