Adolescents and Young Adults With Cancer Treatment and Transition to An Adult Oncology Environment
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Adolescents and Young Adults With Cancer Treatment and Transition to An Adult Oncology Environment

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David J Friedman, MD, Phd

David J Friedman, MD, Phd

Presented at the 2010 Texas Adolescent and Young Adult Oncology Conference hosted by Methodist Healthcare-San Antonio in October, 2010

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Adolescents and Young Adults With Cancer Treatment and Transition to An Adult Oncology Environment Adolescents and Young Adults With Cancer Treatment and Transition to An Adult Oncology Environment Presentation Transcript

  • ADOLESCENTS AND YOUNG ADULTS WITH CANCER TREATMENT AND TRANSITION TO AN ADULT ONCOLOGY ENVIRONMENT David J Friedman MD. PH.D
  • Copyright ©2007 American Cancer Society From Bleyer, A. CA Cancer J Clin 2007;57:242-255. FIGURE 1 Incidence of Invasive Cancer by Individual Year of Patient Age at Diagnosis and by Gender, US SEER, 1973 to 2003
  • Copyright ©2007 American Cancer Society From Bleyer, A. CA Cancer J Clin 2007;57:242-255. FIGURE 6 Change in 5-year Relative Survival from 1975 to 1980 to 1993 to 1997 by Age at Diagnosis, All Invasive Cancer, US SEER
  • Copyright ©2007 American Cancer Society From Bleyer, A. CA Cancer J Clin 2007;57:242-255. FIGURE 10 Cancer Mortality Rate by Age at Death and Era, United States, 1975 to 2003
  • Copyright ©2007 American Cancer Society From Bleyer, A. CA Cancer J Clin 2007;57:242-255. FIGURE 8 Cancers with 5-year Relative-survival Rates That Are Lower in Adolescents and Young Adults Than in Younger Patients, US SEER, 1993 to 1997
  • Copyright ©2007 American Cancer Society From Bleyer, A. CA Cancer J Clin 2007;57:242-255. FIGURE 7 Cancers with 5-year Relative-survival Rates That Are Lower in Adolescents and Young Adults Than in Younger and Older Patients, US SEER, 1993 to 1997
  • OVERVIEW
    • In 15-30 yr age group 1:168 Americans.
    • Lowest rate of health coverage.
    • Frequent delay in diagnosis.
    • Unique psychosocial needs.
    • Often receive suboptimal chemotherapy dosing.
  • Copyright ©2007 American Cancer Society From Bleyer, A. CA Cancer J Clin 2007;57:242-255. FIGURE 2 Incidence of All Invasive Cancer by Race/Ethnicity and Age at Diagnosis, Age Younger Than 45 Years, US SEER, 1990 to 2003
  • OVERVIEW
    • Two groups of patients:
      • Newly diagnosed patients.
      • Transition to community adult oncology from pediatric care (usually academically based).
  • OVERVIEW
    • Benefits and problems of the effect of therapy:
      • Longer quality of life.
      • Longer period of morbidity.
  • EPIDEMIOLOGY
    • 3x More cancer patients (15-30 yr) than in the first 15 yrs.
    • >20,000 New cases per year (15-30 yr).
    • Higher mortality overall than the first 15 yrs.
  • Copyright ©2007 American Cancer Society From Bleyer, A. CA Cancer J Clin 2007;57:242-255. FIGURE 4 Relative Incidence of the Most Frequent Types of Invasive Cancer in 15- to 29-year-olds, US SEER, 1992 to 2000
  • Copyright ©2007 American Cancer Society From Bleyer, A. CA Cancer J Clin 2007;57:242-255. FIGURE 9 US National Annual Cancer Mortality Rate by Calendar Year for Ages Younger Than 15 Years, 15 to 19 Years, 20 to 24 Years, and 25 to 29 Years at Diagnosis
  • Copyright ©2007 American Cancer Society From Bleyer, A. CA Cancer J Clin 2007;57:242-255. FIGURE 3 Incidence of Invasive Cancer by Calendar Year and Age at Diagnosis, Age Younger Than 30 Years, US SEER, 1993 to 2003
  • ETIOLOGY AND RISK FACTORS
    • Environmental issues (older adults).
    • Majority: Spontaneous (rarely preventable)
    • Exceptions:
      • Melanoma
      • Cervical cancer (papilloma virus)
      • HIV related
      • EBV related.
  • DIAGNOSIS
    • Frequently delayed.
    • Psychosocial issues.
    • No routine medical care (no PCP).
    • Lack of health insurance.
    • Physicians;
      • Inexperience, often miss early diagnosis.
      • Reluctance.
      • Work-up not age related.
  • DIAGNOSIS AND TREATMENT
    • Most adolescents are treated at adult facilities.
      • Very little psychosocial support.
      • Geared to a much older population.
      • Treated according to adult protocols – poorer results (Acute lymphoblastic leukemia, Ewing’s sarcoma, Rhabdomyosarcoma, Osteosarcoma).
      • Better results with treatment of a pediatric cancer with a pediatric protocol and by a pediatric oncologist.
      • Lower accrual to treatment on national protocols.
  • Copyright ©2007 American Cancer Society From Bleyer, A. CA Cancer J Clin 2007;57:242-255. FIGURE 5 Estimated Proportion of Newly Diagnosed Cancer Patients Accrued to National Treatment Trials by Patient Age at Study Entry, 1997 to 2003
  • Copyright ©2007 American Cancer Society From Bleyer, A. CA Cancer J Clin 2007;57:242-255. FIGURE 11 Accruals to US National Cancer Treatment Trials, 2003 to 2005 Versus 2000 to 2002
  • AYA POPULATION
    • Less co-morbid disease.
    • Tolerate more treatment intensity.
    • Tolerate surgery with less morbidity.
    • Radiation tolerances:
      • Better than in younger patients.
      • Less is known about specific tissue tolerances in 15-30 yr age group.
  • CHEMOTHERAPY
    • Less oversight.
    • Lower compliance with oral chemotherapy.
    • Conflicts: school, work, parenting issues.
    • Financial limitations.
    • Transportation problems.
    • Receive lower intensity treatment.
  • PSYCHOSOCIAL AND SUPPORTIVE CARE ISSUES
    • Adolescents – unique needs and problems:
      • Self image.
      • Peer pressure.
      • Impaired sexuality.
      • Teratogenic risks.
      • Mutilating surgery.
  • SCHOOL/ OCCUPATIONAL ISSUES
    • Loss of school/college time while on treatment.
    • New jobs, insufficient sick leave and less tolerance of absence from work.
    • Lower wage jobs.
    • Frequently or inadequately insured.
  • PERSONAL RELATIONSHIPS
    • Strained personal relationships with:
      • Siblings.
      • Family.
      • With young spouses.
      • Fertility and offspring concerns.
    • Care-givers: Delicate balance between providing care and allowing flexibility.
  • QUALITY OF SURVIVAL
    • Effect of treatment related toxicity:
      • Non-compliance.
      • Forgoing further care.
      • Increased risky behavior.
  • INITIATION/TRANSITION OF CARE IN AYA PATIENTS
    • Begin early – before the transition occurs.
    • Emphasize continuity of care.
    • Foster personal responsibility.
    • Be supportive and positive. Care must be:
      • Accessible.
      • Family oriented.
      • Compassionate.
      • Culturally sensitive.
  • CARE BEYOND THE ILLNESS
    • Manage late effects.
    • Support resolution of psychosocial issues.
    • Continuously provide health related education.
    • Assistance with health insurance.
    • Assist with employment problems.
  • SUBSEQUENT AYA CARE FOR SURVIVORS
    • Longitudinal.
    • Risk based plan for :
      • Screening
      • Surveillance
      • Prevention
    • Consider genetic predispositions and fertility issues.
    • Address co-morbid health conditions/ disabilities.
  • PEDIATRIC AND ADULT ONCOLOGY: PRACTICE DIFFERENCES
    • Pediatric oncologist;
      • Often provides life-long follow-up.
      • Usually academic based.
        • More ancillary services.
        • Research oriented.
        • Enrollment on research protocols.
      • Disadvantage:
        • Adult-oriented problems and second malignancies
        • Older patients often unwilling to return to a pediatric environment.
  • PEDIATRIC AND ADULT ONCOLOGY: PRACTICE DIFFERENCES
    • Adult oncologist:
      • Ill-prepared for managing younger patients.
      • Limited resources for addressing psychosocial/ economic problems.
      • No plan for long-term care.
      • No plan for evaluating late effects (multidisciplinary task).
  • CHARACTERISTICS OF AN ADULT ONCOLOGY PRACTICE
    • Very busy
    • Limited time or inclination to address issues beyond immediate medical need.
    • Community setting.
    • Absence of ancillary support
    • Need the support of practice partners.
  • ADULT ONCOLOGY PRACTICE
    • Practice partners may not feel comfortable with pediatric and increased intensity protocols.
    • Committed multidisciplinary team needed to address:
      • Immediate care.
      • Long-term follow-up and monitoring of side effects/ late effects.
  • LONG TERM FOLLOW-UP
    • INSTITUTIONALLY BASED CARE
      • Continues through the institution that first provided or initiated treatment.
      • Pediatric oncology driven.
    • COMMUNITY BASED CARE:
      • Follow-up by adult oncologist and /or PCP
      • Limited link to pediatric group or facility.
  • INSTITUTIONALLY BASED CARE
    • Need adult-oriented physicians on the team:
      • Adult oncologist,
      • PCP
      • Cardiologist
      • Endocrinologist
  • COMMUNITY BASED CARE
    • Forge a close relationship between original pediatric facility and adult oncologist/PCP.
    • Pediatric center/LTFU facility provides assistance with:
      • Patient compliance
      • Psychosocial issues
      • Assistance with referrals to sub-specialists.
  • ADDITIONAL BARRIERS TO APPROPRIATE CARE
  • PATIENT RELATED BARRIERS
    • Complex medical problems.
    • Lack of personal responsibility for health.
    • Lack of trust in the new PCP/adult oncologist.
    • Lack of personal support.
  • PATIENT AND FAMILY BARRIERS
    • Over protectiveness
    • Lack of trust in new provider
      • May seem less knowledgeable.
    • Fear of loss of parental control
    • Emotional dependency on the adolescent.
  • ADULT PROVIDER BARRIERS
    • Lack of knowledge/experience
      • Transitional care
      • Underlying illness
    • No emotional bond with the patient and family
    • Burden of assuming care for a complex patient, sometimes demanding, dependent, and possibly with psychosocial problems.
  • HEALTH SYSTEM BARRIERS
    • Referral networks are missing
      • Unwilling to assume burden.
    • Loss of health insurance.
    • No systematic training in transitional/ post-transitional care
    • Lack of time.
  • POSSIBLE RESOLUTION:
    • Endorsement of a health care transition team in the community
    • Institute appropriate research protocols with other AYA groups.
    • Provide CME for adult PCP’s/Oncologists to better educate providers.
    • Early involvement of adult oncologists with adolescent patients well before the transition occurs.
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  • Copyright ©2007 American Cancer Society From Bleyer, A. CA Cancer J Clin 2007;57:242-255. FIGURE 12 Accrual of <40-year-olds to National Sarcoma Treatment Trials by 2-calendar-year Intervals, 1998 to 2005, According to <15-year (Green) and 15- to 39-year (Red) Age Groups