ArticlePDF Available

Quality Cancer Care for Adolescents and Young Adults: A Position Statement

Authors:

Abstract and Figures

This consensus-based position statement on behalf of the LIVESTRONG Young Adult Alliance (Alliance) offers recommendations to enhance oncologic care of adolescent and young adult (AYA) patients with cancer. In 2005 to 2006, the National Cancer Institute and the Lance Armstrong Foundation jointly sponsored the Adolescent and Young Adult Oncology Progress Review Group (PRG). The PRG report included the directive to develop standards of care for AYA patients with cancer and to disseminate these guidelines to the community. To this end, the Alliance convened a meeting of experts (clinicians, researchers, and advocates) in June 2009 and derived this position statement. Quality care for AYAs depends on four critical elements: timely detection; efficient processes for diagnosis, initiation of treatment, and promotion of adherence; access to health care professionals who possess knowledge specific to the biomedical and psychosocial needs of this population; and research that will ultimately derive objective criteria for the development of AYA oncology care guidelines. Achieving quality care for AYAs will require assistance with management of disease and treatment effects; cognizance of the unique psychosocial context for AYA growth and development; assessment of and attention to cognitive, psychiatric, and psychosocial issues; facilitated transition to treatment care; and referral to age-appropriate information and support services. Dissemination of recommendations stated here will raise awareness of the need for AYA-specific care guidelines and assist providers in the delivery of care that is responsive to the distinct needs of AYAs with cancer.
Content may be subject to copyright.
Quality Cancer Care for Adolescents and Young Adults: A
Position Statement
Brad Zebrack, Beth Mathews-Bradshaw, and Stuart Siegel
From the Standards of Care Task Force,
LIVESTRONG™ Young Adult Alliance, a
program of the Lance Armstrong Foun-
dation; Association of Oncology Social
Work, Philadelphia, PA; University of
Michigan Comprehensive Cancer
Center and School of Social Work, Ann
Arbor, MI; Science Applications Interna-
tional Corporation, McLean, VA; Child-
rens Hospital Los Angeles; and Keck
School of Medicine, University of
Southern California, Los Angeles, CA.
Submitted May 17, 2010; accepted
August 5, 2010; published online ahead of
print at www.jco.org on September 20,
2010.
The LIVESTRONG™ Young Adult Alli-
ance, a program of the Lance
Armstrong Foundation, provided fund-
ing and staff support for the Standards
of Care for Adolescents and Young
Adults with Cancer Meeting and this
resulting position paper.
The ideas and opinions expressed
herein are those of the authors and the
LIVESTRONG™ Young Adult Alliance.
Endorsement by the author’s or Alli-
ance member’s individual institutions is
not intended, nor should it be inferred.
Authors’ disclosures of potential con-
flicts of interest and author contribu-
tions are found at the end of this
article.
Corresponding author: Brad Zebrack,
PhD, MSW, MPH, 1080 S University,
Ann Arbor, MI 48109-1106; e-mail:
zebrack@umich
.edu.
© 2010 by American Society of Clinical
Oncology
0732-183X/10/2899-1/$20.00
DOI: 10.1200/JCO.2010.30.5417
ABSTRACT
Purpose
This consensus-based position statement on behalf of the LIVESTRONG Young Adult Alliance
(Alliance) offers recommendations to enhance oncologic care of adolescent and young adult (AYA)
patients with cancer.
Background
In 2005 to 2006, the National Cancer Institute and the Lance Armstrong Foundation jointly
sponsored the Adolescent and Young Adult Oncology Progress Review Group (PRG). The PRG
report included the directive to develop standards of care for AYA patients with cancer and to
disseminate these guidelines to the community. To this end, the Alliance convened a meeting
of experts (clinicians, researchers, and advocates) in June 2009 and derived this posi-
tion statement.
Results
Quality care for AYAs depends on four critical elements: timely detection; efficient processes for
diagnosis, initiation of treatment, and promotion of adherence; access to health care professionals
who possess knowledge specific to the biomedical and psychosocial needs of this population; and
research that will ultimately derive objective criteria for the development of AYA oncology care
guidelines. Achieving quality care for AYAs will require assistance with management of disease
and treatment effects; cognizance of the unique psychosocial context for AYA growth and
development; assessment of and attention to cognitive, psychiatric, and psychosocial issues;
facilitated transition to treatment care; and referral to age-appropriate information and sup-
port services.
Conclusion
Dissemination of recommendations stated here will raise awareness of the need for AYA-specific
care guidelines and assist providers in the delivery of care that is responsive to the distinct needs
of AYAs with cancer.
J Clin Oncol 28. © 2010 by American Society of Clinical Oncology
INTRODUCTION
The incidence of cancer in young people ages 15 to
30 years has steadily increased during the past 25
years.
1
In 2009, an estimated 62,000 people in the
United States between the ages of 20 to 39 years
old will have been diagnosed with invasive can-
cer.
2
Cancer is a leading cause of nonaccidental
death among adolescents and young adults in the
US.
3
Despite advances in cancer prevention, early
detection, and treatment over the past several de-
cades, survival rates and quality-of-life (QOL) out-
comes for adolescents and young adults (AYAs)
diagnosed with cancer have not improved to the
extent they have for younger children and older
adult cancer populations.
4-6
Progress in advancing
biomedical and psychosocial outcomes for AYAs
has been limited by a number of factors, including
suboptimal knowledge of and access to specialized
care, inconsistent referral practices, limited research
on cancer in this age group accompanied by limited
access to and participation in clinical trials, inconsis-
tency in treatment and follow-up care, and limited
psychosocial resources and services with an AYA-
specific focus.
1,6-11
The current lack of evidence-based guidelines
and standards of care specific to AYAs with cancer
results in health care providers, either appropriately
or perhaps inappropriately, treating AYAs based on
guidelines developed for the treatment of children
or older adults. Referral patterns are arbitrary and
usually based on the patient’s age—those under 18
are commonly referred to pediatric oncology spe-
cialists and those 18 or older are referred to adult
JOURNAL OF CLINICAL ONCOLOGY REVIEW ARTICLE
© 2010 by American Society of Clinical Oncology 1
http://jco.ascopubs.org/cgi/doi/10.1200/JCO.2010.30.5417The latest version is at
Published Ahead of Print on September 20, 2010 as 10.1200/JCO.2010.30.5417
Copyright 2010 by American Society of Clinical Oncology
Downloaded from jco.ascopubs.org by BRANDON HAYES-LATTIN on September 21, 2010 from 98.246.8.189
Copyright © 2010 American Society of Clinical Oncology. All rights reserved.
oncology specialists—and neither group has the majority of its pa-
tients in the AYA age range of 15 to 39. While prospective research and
data for this age group are sparse, retrospective analyses of disease-
specific protocols within this 15- to 39-year-old age range are begin-
ning to distinguish cancer biology and treatment responses in the AYA
population from that in older adults and children.
3-6,12-14
Further-
more, current institutional environments and care settings created for
the treatment of children or older adults with cancer are not fully
equipped to address the unique needs of a highly mobile AYA popu-
lation experiencing multiple demands such as work, school, raising
children, and assisting aging parents, all of which can be potential
barriers to optimal treatment adherence. To date, we lack state-of-the-
art therapies, protocols, and evidence-based practice guidelines for
AYAs diagnosed with cancer.
Recognizing the need to improve outcomes for AYAs across the
cancer control continuum, the National Cancer Institute (NCI) and
the Lance Armstrong Foundation jointly sponsored the Adolescent
and Young Adult Oncology Progress Review Group (AYAO PRG) in
2005 to 2006. This group reviewed the biologic, biomedical, and
psychosocial aspects of cancer diagnosis and treatment in the AYA
population and published imperatives for improving measurable out-
comes in a report entitled “Closing the Gap: Research and Care Im-
peratives for Adolescents and Young Adults with Cancer.”
15
The
LIVESTRONG™ Young Adult Alliance (Alliance), a coalition of 110
organizations representing clinicians, researchers, and patient advo-
cates, created a 5-year strategic implementation plan for the AYAO
PRG recommendations.
16
This implementation plan includes a strat-
egy to “Develop standards of care guidelines for AYAO programs and
patients, and [to] disseminate these guidelines to the community.”
16
To facilitate this effort, on June 7 to 8, 2009, the Alliance convened an
expert panel of 28 individuals representing cancer centers, aca-
demia, community-based care settings, and nonprofit service
agencies (Appendix, online only).
This position statement is the product of that collaboration. It is
a preliminary step toward enhancing care for AYAs by providing
consensus recommendations intended to supplement existing stan-
dards of care that apply to all oncology patients, such as the clinical
practice guidelines in oncology disseminated by the National Cancer
Comprehensive Network.
17
By putting forth these recommendations,
we hope to raise awareness of the need for evidence-based guidelines
for AYA care and, in the interim before development of those
guidelines, assist NCI-designated cancer centers, community can-
cer centers and hospitals, and private oncology practices in deliv-
ering optimal quality cancer care for AYAs. This position statement
reflects distinct needs related to the diagnosis, treatment, and care
of AYAs with cancer, as suggested by emergent research and clini-
cal observations.
18-22
SUMMARY OF RECOMMENDATIONS
The Alliance recommends the following: formulation of standards of
care for AYAs with cancer that ensure excellence throughout the
continuum of care from awareness and timely detection through
treatment, survivorship, or end of life care; access to and availability of
health professionals with the education, training, and experience nec-
essary for providing age-appropriate medical, psychosocial, and sup-
portive care services (a physician champion is essential); consider the
resources of the facility that provides care (eg, NCI-designated cancer
center vcommunity hospital); for facilities that cannot provide direct
access to AYA-specific care, locate and encourage facilitated access to
AYA-specific oncology care within the oncology community at-large;
develop and apply scientific standards to support efficacious treat-
ment protocols for AYA patients with cancer; promote awareness and
education for providers, particularly around need to increase partici-
pation of AYAs in clinical trials; and develop and implement strategies
Continuum of Care
Diagnosis and
Treatment Survivorship End-of-Life Care
Personnel, Components, and Services
AYA Champion
Pediatric Oncologist
Adult Oncologist
Oncology Specialists (radiation, surgery,
gynecology, etc)
Primary Care Provider
Patient/Peer Navigator
Mental Health Professionals (psychologist,
social worker)
Palliative Care Specialist
Religious/Spiritual Counsel/Chaplaincy
Legal Counsel
Peer Support
Community-Based Patient Service Organizations
Child Life Specialist (for patients with children)
Physical Therapist, Fitness Trainer, Coach
Nutritionist/Dietitian
Geneticist/Genetic Counselor
Reproductive Endocrinologist/Fertility Specialist
Sexual Health Specialist
Vocational Rehabilitation/Occupational Therapist
AYA-Trained Hospice Team
Fig 1. AYA cancer care personnel, components, and services. AYA, adolescents and young adults.
Zebrack, Mathews-Bradshaw, and Siegel
2© 2010 by American Society of Clinical Oncology JOURNAL OF CLINICAL ONCOLOGY
Downloaded from jco.ascopubs.org by BRANDON HAYES-LATTIN on September 21, 2010 from 98.246.8.189
Copyright © 2010 American Society of Clinical Oncology. All rights reserved.
for integrating the critical elements outlined in this consensus
statement into clinical practice in a way that allows for systemic
evaluation of measurable outcomes and advancements in care
based on these measurements.
PERSONNEL, COMPONENTS, AND SERVICES
Consistent with the Institute of Medicine’s report on quality cancer
care,
20
treating programs or institutions must have internal or adjunct
access to facilities, personnel, and services that enhance care for AYA
patients with cancer. Currently, AYA cancer care is delivered through
large academic institutions, NCI-designated cancer centers, free-
standing community cancer programs, ambulatory care clinics (eg,
radiation clinics and chemotherapy infusion units), medical oncology
groups, and individual practices. Wherever the location of care, it is
imperative that those treating AYA patients with cancer have access to
an appropriate knowledge base and expertise appropriate to each
AYA’s diagnosis. Oncology care providers who are educated to spe-
cific issues related to AYAs with cancer (eg, fertility preservation,
preventing social isolation, potentially differential responses to treat-
ment based on protocols selected) are better equipped to provide
tailored AYA oncology care. To expect every treatment setting, from
large institutions to private oncology practices, to possess all the per-
sonnel, facilities, and components needed for the best treatment of the
AYA patient with cancer is not realistic. The resources available to
these institutions vary enormously. Given this reality, providers and
treating institutions can reasonably be expected to have knowledge of
ancillary and supportive care opportunities for AYAs with cancer and
to provide referrals to appropriate sources within care networks or in
the broader community, as opposed to being expected to have an
AYA-specific specialist on staff.
There is, however, potential value in the identification of an AYA
champion—an oncology care provider who is available to other phy-
sicians and oncology care providers for the purposes of consultation
within institutions and communities and across oncology-related dis-
ciplines and departments. Ideally, this AYA champion would be edu-
cated to the specifics of AYA oncology as well as adult and pediatric
oncology issues. Practically, a more likely scenario is a model in which
an AYA champion is a specialist who collaborates and coordinates care
across different services (eg, pediatric oncology, adult oncology, gyne-
cology, urology, radiation oncology, surgery). To assure that the
unique needs of AYA patients are met, an AYA champion could,
Table 1. Critical Elements, Sample Strategies, and Outcome Measures for Improving Survival
Critical Element Sample Strategy Possible Outcome Measure
Early detection and
diagnosis
Educational programs for primary care physicians and nurse
practitioners that raise their awareness of cancer and cancer
risks in AYAs
Awareness of cancer risks in AYAs among primary care providers
Collaborations among health care and advocacy groups to improve
knowledge of AYA cancer in the medical community
AYA awareness and knowledge of cancer health risks and
preventive behaviors (eg, sun exposure, testicular self-exam,
breast self-exam)
Screening standards established and implemented
Timely referral, initiation
of treatment, and
adherence
Develop shared models of care for integration of primary and
oncology care
Length of time from symptom report to diagnosis
Apply existing quality control standards for the diagnosis and
treatment of all cancers to AYAs
Length of time of transition from primary care referral to
oncology care system
Monitor and assure adherence to treatment protocol Treatment adherence/compliance rates
Integrate age-appropriate psychosocial and supportive care
services
Quality control and outcomes standards
Genetic testing and counseling Determine prevalence of genetically related cancers in AYAs
Health care providers
knowledgeable of
biomedical and
psychosocial issues
specific to AYAs
Establish systems for referral and use of services either within
institutions or through community agencies that serve AYAs
Provider knowledge of differential impact of therapies on AYAs
as compared to pediatric and older adult populations
Provide access to an AYA champion and ancillary health care
providers knowledgeable about AYA needs
Number of clinical care programs with access to AYA-specific
multidisciplinary expertise
Provision of evidence-based treatment protocols for AYA patients Percent of all AYA patients who have accessed AYA-specific
expertise and services
Promote networking and training around utilization of evidence-
based protocols and clinical trial availability
Percent of AYA patients treated per available AYA-specific
protocol
Patient satisfaction
AYAO-specific research Develop evidence-based standards for best practices for AYA
cancer treatment
Proportion of AYA cancers for which AYA-specific clinical trials
have been developed
Develop treatment protocols and clinical trials for AYA-specific
cancers
Proportion and absolute number of AYA patients entered on
clinical trials
Establish venues for disseminating knowledge and education
about clinical trials
Availability of biospecimens and number of investigations utilizing
biospecimens in research
Coordinate collection, utilization, and analyses of biospecimens
according to best practices
Availability of program announcements or requests for
applications calling for AYA-specific biomedical, psychosocial,
and behavioral research
Perform longitudinal, prospective cohort studies to investigate
biomedical and psychosocial outcomes
Survival rates, quality of survival, and key determinants of these
outcomes
Conduct studies of health services utilization and cost-benefit
analyses
Use of health services; cost-benefit ratios
Abbreviations: AYAs, adolescents and young adults; AYAO, adolescent and young adult oncology.
Quality Cancer Care for Adolescents and Young Adults
www.jco.org © 2010 by American Society of Clinical Oncology 3
Downloaded from jco.ascopubs.org by BRANDON HAYES-LATTIN on September 21, 2010 from 98.246.8.189
Copyright © 2010 American Society of Clinical Oncology. All rights reserved.
among other activities, seek to increase the availability and enrollment
of AYAs on clinical trials, promote multidisciplinary tumor board
discussions of AYA patients that include pediatric and medical oncol-
ogy representation, and provide access to age- or developmentally
appropriate psychosocial care (including supportive counseling and
peer support programs).
Figure 1 offers a graphic representation of recommended person-
nel, components, and services integral to AYA optimal care and sug-
gests when along a continuum of care these elements should be
activated. While many of these elements can be considered critical for
the care of cancer patients of any age, we suggest that due to AYAs’
unique physiology, cancer manifests differently in AYAs than in
Table 2. Critical Elements, Sample Strategies, and Outcome Measures for Improving QOL and Quality of Care Throughout the Cancer Care Continuum
Critical Element Sample Strategy Possible Outcome Measure
Assistance with
disease and
treatment effects
(ie, symptom
management,
fertility
preservation,
sexual
dysfunction, and
body image)
Patient education programs that provide AYAs with knowledge regarding
treatment options and the potential physical and QOL implications of
cancer therapy
Patient knowledge of treatment-related health risks
Provide access to a systematic and standardized symptom management,
pain control, and palliative care program
Treatment adherence
Inform reproductive-age patients of cancer-related fertility risks as early in
treatment planning as possible (per the ASCO guideline
24
) and refer as
needed to an appropriate fertility preservation specialist
Compliance with ASCO guidelines for addressing
fertility issues, including utilization of fertility
preservation
Provide knowledge of body image concerns (eg, hair loss, body
disfigurement, weight loss/gain) and access to practical resources to
address them (eg, wigs and prosthetics)
Referral patterns to appropriate and ancillary
supportive care services
Physical and mental health function, including pain
status and fatigue, and extent to which function
interferes with QOL
Cognizance among
providers of the
unique
psychosocial
context for AYA
growth and
development
Educational programs to increase provider knowledge of unique AYA issues
related to psychosocial, legal, financial, genetic testing, palliative care, etc
needs
Demonstrable knowledge of
psychological/developmental needs relevant to
adolescence and young adulthood
Create age-appropriate environments and policies (eg, access to same-age
peers, Internet access, flexible clinic hours around school and work, and
waiting rooms/lounges outfitted with age-appropriate media/materials)
Evidence of advanced clinical training specific to AYAs
Provide or refer to resources for developmentally appropriate end-of-life
care, including planning for death
Availability of AYA-appropriate patient education
materials and resources
Assessment of and
attention to
cognitive,
psychiatric, and
psychosocial
needs of AYA
patients
Clinical interview/psychosocial assessment evaluating social functioning (eg,
work, school, and relationships with family and friends), sexual health,
mental health status (including suicide assessment when indicated),
religion and spirituality, psychiatric symptoms, cognitive functioning, and
financial/legal issues
Utilization of mental health counseling, psychosocial
support, and supportive care services
Ongoing monitoring of cognitive, psychiatric, and psychosocial function, as
well as referral to resources to address identified needs
Psychosocial adaptation, HRQOL
Assess for substance use/abuse and refer to treatment, when indicated Referral patterns to appropriate psychosocial support
services
Promote AYAs’ knowledge and competence in medical decision-making and
involvement in self-care (self-efficacy)
Cancer-related self-efficacy
Promote communication between AYA patients and family members
(including spouses/partners, parents, young children) and between AYA
patients and health care providers
Provider-patient communication
Provide access to resources to develop advanced directives, wills, and/or
trusts
Possession of advanced directives
Referral to available
age-appropriate
resources during
treatment
Provide or refer patient to reputable community and Internet-based
educational and support resources
AYA utilization of mental health counseling/support
services
Establish relationships with community partners and agencies Linkages between treating institution/practice and
community-based agencies serving AYAs
Provide awareness, assessment, and support of practical issues while under
treatment, such as child care, transportation, and housing
Adherence to recommended treatment
Assist AYA patients in assessing the impact of their treatment plan on their
education/work/career plans
Adequate insurance coverage; financial needs
addressed
Assist with the navigation of financial and insurance issues when needed
Facilitation of
transition to
survivorship
Survivorship care plan available to patients and other appropriate health
providers
Possession of a survivorship care plan
Provide early education related to the transition of an adolescent from
pediatric to adult settings/providers
Health behaviors (cancer screening, use of sunscreen,
smoking, diet, etc)
Assist AYA survivors in developing appropriate self-management behaviors,
including health literacy, coping skills, and understanding of treatment
implications
Successful transition to adult settings and/or providers
Provide resources for managing co-morbidities and ongoing late effects Health services utilization (primary care, oncologic
care, specializations)
Provide lifetime access to portable treatment records HRQOL, self-efficacy, health literacy
Provide access to health insurance information Health insurance status
Abbreviations: QOL, quality of life; AYA, adolescents and young adults; ASCO, American Society of Clinical Oncology; HRQOL, health-related quality of life.
Zebrack, Mathews-Bradshaw, and Siegel
4© 2010 by American Society of Clinical Oncology JOURNAL OF CLINICAL ONCOLOGY
Downloaded from jco.ascopubs.org by BRANDON HAYES-LATTIN on September 21, 2010 from 98.246.8.189
Copyright © 2010 American Society of Clinical Oncology. All rights reserved.
children and older adults. The personnel listed in this document must
be cognizant of how this affects AYAs’ psychology and overall QOL,
and thus must be educated to administer biomedical and psychosocial
therapies or interventions appropriate to this population. The com-
panion manuscript “Adolescent and Young Adult Oncology Training
for Health Professionals: A Position Statement” addresses the ele-
ments of training and education that health professionals committed
to the care of AYAs should receive.
23
CRITICAL ELEMENTS, CLINICAL CARE STRATEGIES, AND
MEASURABLE OUTCOMES FOR IMPROVING AYAO CARE
Improvements in treatment outcomes, survival rates, and QOL for
this age-specific population depend on four critical elements: timely
detection; efficient processes for diagnosis, initiation of treatment, and
promotion of adherence; access to health care professionals who pos-
sess knowledge specific to the biomedical and psychosocial needs of
this population, including knowledge of the evidence-based treatment
protocols for achieving best outcomes for AYAs; and rigorous AYA-
specific research. Examples of clinical care strategies reflecting these
elements are summarized in Table 1, along with examples of suggested
outcome measures to demonstrate the effect of these AYA-specific
elements on survival.
IMPROVING QUALITY OF CARE AND QOL ACROSS THE CANCER
CARE CONTINUUM
As described elsewhere,
1,8,11
research has begun to identify the unique
impacts of cancer on QOL issues for AYAs. Thus, clinical care and
investigations of cancer’s impact on QOL and psychosocial outcomes
must take into account the stage of life at which cancer is diagnosed in
these young people.
To enhance QOL and quality of care for AYA patients with
cancer, providers must address the specific health and psychosocial
needs of AYAs. Doing so will require: assistance with the management
of disease and treatment effects, particularly fertility and body image
issues; cognizance of the unique psychosocial context for AYA growth
and development; assessment of and attention to cognitive, psychiat-
ric, and psychosocial effects and needs; facilitated transition to off-
treatment care; and referral to available age-appropriate information
and support services when indicated. Sample strategies for achieving
these objectives are summarized in Table 2.
24
Ultimately, the success
of clinical care strategies may be determined by observation and mea-
surement of the outcomes or competencies listed in Tables 1 and 2.
NEXT STEPS AND CHALLENGES
The recommendations set forth here are intended to be a first step
toward raising awareness of the need for guidelines of care in AYA
oncology. As next steps in an implementation strategy for developing
standards of care, the Alliance recognizes the need to test and validate
the extent to which recommendations proposed here in fact result in
improved survival and QOL outcomes. As clinical programs and new
models of care for treatment of AYA patients emerge, studies need to
derive objective evidence demonstrating the efficacy of critical com-
ponents and strategies that ultimately will form clinical care guide-
lines. Complex issues exist that make the creation of guidelines
challenging, including but not limited to the following: health systems
outside the US use different terminology and a narrower age range to
define the AYA oncology population; these facts, in addition to their
greater dedicated resources, make it difficult to apply their lessons
learned in the US;
25,26
the US health system consists of multiple tiers of
health care professionals, from general practitioners within the com-
munity to oncology specialists at large NCI-designated cancer centers,
making increased awareness of AYA oncology and the provision of
specialized care throughout the system difficult; the development of
systematic research methods and measurable outcomes depends on
the availability of funded research opportunities and settings, and all
in a time of limited resources and economic pressures; and the ability
to address research questions related to this age-specific population is
dependent on the accrual of sufficient numbers of AYA patients to
studies and clinical trials for statistical analyses to have analyz-
able power.
CONCLUSION
We set forth these recommendations for the oncology community to
stimulate interest and illustrate the need to enhance quality of care for
AYAs. Evidence-based guidelines for AYAO care will offer providers
objective criteria by which they can assess the quality of care provided
in their programs to this age-specific population. In the interim, health
care providers in all settings may improve treatment outcomes and
QOL for AYAs with cancer by adopting recommendations in this
position statement.
AUTHORS’ DISCLOSURES OF POTENTIAL CONFLICTS
OF INTEREST
The author(s) indicated no potential conflicts of interest.
AUTHOR CONTRIBUTIONS
Conception and design: Brad Zebrack, Beth Mathews-Bradshaw,
Stuart Siegel
Administrative support: Beth Mathews-Bradshaw
Provision of study materials or patients: Stuart Siegel
Collection and assembly of data: Brad Zebrack, Stuart Siegel
Data analysis and interpretation: Brad Zebrack, Stuart Siegel
Manuscript writing: Brad Zebrack, Beth Mathews-Bradshaw,
Stuart Siegel
Final approval of manuscript: Brad Zebrack, Beth Mathews-Bradshaw,
Stuart Siegel
REFERENCES
1. Bleyer A, O’Leary M, Barr R, et al: Cancer
Epidemiology in Older Adolescents and Young
Adults 15 to 29 Years of Age, Including SEER
Incidence and Survival: 1975-2000. Bethesda, MD,
National Cancer Institute, NIH Pub. No. 06-5767,
2006. http://www.seer.cancer.gov/publications/aya/
2. Bleyer A, Barr R: Cancer in young adults 20 to
39 years of age: Overview. Semin Oncol 36:194-
206, 2009
3. Bleyer A: The adolescent and young adult gap
in cancer care and outcome. Curr Probl Pediatr
Adolesc Health Care 35:182-217, 2005
4. Bleyer A: Young adult oncology: The patients
and their survival challenges. CA Cancer J Clin
57:242-255, 2007
Quality Cancer Care for Adolescents and Young Adults
www.jco.org © 2010 by American Society of Clinical Oncology 5
Downloaded from jco.ascopubs.org by BRANDON HAYES-LATTIN on September 21, 2010 from 98.246.8.189
Copyright © 2010 American Society of Clinical Oncology. All rights reserved.
5. Tai E, Pollack LA, Townsend J, et al: Differ-
ences in non-Hodgkin lymphoma survival between
young adults and children. Arch Pediatr Adolesc
Med 164:218-224, 2010
6. Thomas DM, Seymour JF, O’Brien T, et al:
Adolescent and young adult cancer: A revolution in
evolution? Intern Med J 36:302-307, 2006
7. Albritton K, Bleyer WA: The management of
cancer in the older adolescent. Eur J Cancer 39:
2584-2599, 2003
8. Evan EE, Zeltzer LK: Psychosocial dimensions
of cancer in adolescents and young adults. Cancer
107:1663-1671, 2006
9. Haase JE, Phillips CR: The adolescent/young
adult experience. J Pediatr Oncol Nurs 21:145-149,
2004
10. Shama W, Lucchetta S: Psychosocial issues
of the adolescent cancer patient and the develop-
ment of the Teenage Outreach Program (TOP).
J Psychosoc Oncol 25:99-112, 2007
11. Zebrack B, Hamilton R, Smith AW: Psychos-
ocial outcomes and service use among young adults
with cancer. Semin Oncol 36:468-477, 2009
12. Boissel N, Auclerc MF, Lhe´ ritier V, et al:
Should adolescents with acute lymphoblastic leuke-
mia be treated as old children or young adults?
Comparison of the French FRALLE-93 and LALA-94
trials. J Clin Oncol 21:774-780, 2003
13. Nachman JB, La MK, Hunger SP, et al: Young
adults with acute lymphoblastic leukemia have an
excellent outcome with chemotherapy alone and
benefit from intensive postinduction treatment: A
report from the children’s oncology group. J Clin
Oncol 27:5189-5194, 2009
14. Stock W, La M, Sanford B, et al: What deter-
mines the outcomes for adolescents and young
adults with acute lymphoblastic leukemia treated on
cooperative group protocols? A comparison of Chil-
dren’s Cancer Group and Cancer and Leukemia
Group B studies. Blood 112:1646-1654, 2008
15. Adolescent and Young Adult Oncology
Progress Review Group: Closing the Gap: Research
and Care Imperatives for Adolescents and Young
Adults with Cancer. Bethesda, MD, Department of
Health and Human Services, National Institutes of
Health, National Cancer Institute, and the LiveS-
trong Young Adult Alliance, NIH Publication No.
06-6067, 2006. http://planning.cancer.gov/library/
AYAO_PRG_Report_2006_FINAL.pdf
16. LIVESTRONG Young Adult Alliance: Closing
the Gap: A Strategic Plan: Addressing the Recom-
mendations of the Adolescent and Young Adult
Oncology Progress Review Group. Austin, TX,
Lance Armstrong Foundation, 2007. http://www
.livestrong.org/pdfs/LAF-YAA-Report-pdf
17. National Comprehensive Cancer Network,
Inc: NCCN Clinical Practice Guidelines in Oncology.
http://www.nccn.org/professionals/physician_gls/f_
guidelines.asp
18. Abrams AN, Hazen EP, Penson RT: Psychos-
ocial issues in adolescents with cancer. Cancer
Treat Rev 33:622-630, 2007
19. Eiser C, Kuperberg A: Psychosocial support
for adolescents and young adults, in Bleyer WA,
Barr RD, Albritton KH, et al (eds): Cancer in Adoles-
cents and Young Adults. Berlin, Springer-Verlag,
2007, pp 365-373
20. Adler NE, Page AEK (eds): Cancer Care for
the Whole Patient: Meeting Psychosocial Health
Needs. Washington, DC, Institute of Medicine, Na-
tional Academies Press, 2007. http://www.iom.edu/
Reports/2007/Cancer-Care-for-the-Whole-Patient-
Meeting-Psychosocial-Health-Needs.aspx
21. Zebrack B, Bleyer A, Albritton K, et al: Assess-
ing the health care needs of adolescent and young
adult cancer patients and survivors. Cancer 107:
2915-2923, 2006
22. Zebrack BJ, Mills J, Weitzman TS: Health and
supportive care needs of young adult cancer pa-
tients and survivors. J Cancer Surviv 1:137-145,
2007
23. Hayes-Lattin B, Mathews-Bradshaw B, Siegel
S: Adolescent and young adult oncology training for
health professionals: A position statement. J Clin
Oncol doi: 10.1200/JCO.2010.30.5508
24. Lee SJ, Schover LR, Partridge AH, et al:
American Society of Clinical Oncology recommen-
dations on fertility preservation in cancer patients.
J Clin Oncol 24:2917-2931, 2006
25. Palmer S, Thomas D: A practice framework for
working with 15-25 year-old cancer patients treated
within the adult health sector. Melbourne, Australia,
onTrac@PeterMac Victorian Adolescent and Young Adult
Cancer Service, 2008. http://www1.petermac.org/
ontrac/pdf/AYA-Practice-Framework.pdf
26. Whiteson M: The Teenage Cancer Trust: Ad-
vocating a model for teenage cancer services. Eur J
Cancer 39:2688-2693, 2003
■■■
Acknowledgment
The authors/co-chairs wish to acknowledge the following members of the LIVESTRONG™ Young Adult Alliance for their contributions in
the preparation of this article: Kristin Bingen, Ashley Wilder Smith, Douglas Bank, Lindsay Beck, Debra Friedman, Daniel Indelicato, Rebecca
Johnson, Rebecca Morris, Stacy Sanford, Leonard Sender, Lauren Spiker, and Ronald Waldheger.
Appendix
In addition to the authors, participants at the Standards of Care for Adolescents and Young Adults with Cancer Meeting included:
Heidi Adams, Planet Cancer; Karen Albritton, Cook Children’s Medical Center; Yvette Colon, American Pain Foundation; Pat Fobair,
Stanford University; Nicole Grant, National Cancer Institute (NCI); Keren McCord, Oregon Health & Science University (OHSU); Raul
Mena, St. Joseph’s Hospital, Burbank, CA; Robert Mennel, Baylor College of Medicine; Sheila Santacroce, Yale Medical School; Elizabeth
Saylor, Ulman Cancer Fund for Young Adults; Ashley Wilder Smith, NCI; Debra Friedman, Vanderbilt University; Sylvie Aubin, McGill
University; Lindsay Beck, Fertile Hope; Archie Bleyer, St. Charles Medical Center; Kim Day, University Hospitals, Cleveland, OH; Kieron
Dunleavy, NCI; Joseph Flynn, Ohio State University; Brooke Hamilton-Leggin, NCI; Brandon Hayes-Lattin, Oregon Health & Science
University; Julie Larson, CancerCare; Stacy Sanford, Robert H. Lurie Comprehensive Cancer Center; Karla Wilson, Oncology Nursing
Society; and Nicholas Yeager, Ohio State University.
Zebrack, Mathews-Bradshaw, and Siegel
6© 2010 by American Society of Clinical Oncology JOURNAL OF CLINICAL ONCOLOGY
Downloaded from jco.ascopubs.org by BRANDON HAYES-LATTIN on September 21, 2010 from 98.246.8.189
Copyright © 2010 American Society of Clinical Oncology. All rights reserved.
... 5,6 Despite national recommendations, integrated psychosocial support is variable because of the limited availability of proven interventions and trained clinicians to deliver them. [7][8][9][10] To overcome these barriers, we developed the Promoting Resilience in Stress Management (PRISM) program: a brief, skills-based coaching program targeting four evidence-based resilience resources (stress management, goal setting, cognitive reframing, and meaning making). 11 In a phase 2 randomized clinical trial (RCT) among AYAs with new or recurrent cancer, PRISM improved patient-reported resilience, hope, distress, and quality of life compared to usual psychosocial supportive care. ...
Article
Full-text available
Background Adolescents and young adults (AYAs) receiving hematopoietic cell transplantation (HCT) are at high risk of poor psychosocial health. This study aimed to determine whether the Promoting Resilience in Stress Management (PRISM) intervention mitigated these risks during the first 6 months posttransplant. Methods This multisite, parallel, randomized trial was conducted from April 2019 to March 2023. Eligible AYAs were aged 12–24 years, English speaking, and within 1 month of HCT for cancer or cancer predisposition syndrome. They were assigned 1:1 to PRISM (a brief, skills‐based intervention targeting “resilience resources” [stress management, goal setting, cognitive reframing, and meaning making]) or usual care (UC). Outcomes included total symptoms of depression and anxiety (Hospital Anxiety and Depression Scale; primary outcome), hope (Snyder Hope Scale), resilience (10‐item Connor–Davidson Resilience Scale), and health‐related quality of life (HRQOL; Pediatric Quality of Life Inventory Cancer Module). Analyses leveraged multivariable linear regressions; exploratory analyses assessed the influence of baseline depression or anxiety. Results Of 94 enrolled and randomized AYAs, the mean age was 16.7 years (SD, 4.2); 43 (46%) were female, 56 (60%) were non‐Hispanic White, 22 (23%) were Hispanic, and nine (10%) were Black. Most (77%) had leukemia. Of n = 50 randomized to PRISM and n = 44 to UC, 37 (74%) and 33 (73%) completed all study procedures, respectively. In intention‐to‐treat analyses, PRISM did not affect 6‐month depression and anxiety (β = −1.1; 95% CI, −3.7 to 1.5), hope (β = 0.83; 95% CI, −3.3 to 4.9), resilience (β = −0.01; 95% CI, −3.0 to 3.0), or HRQOL (β = 1.5; 95% CI, −4.7 to 7.9). Among AYAs with preexisting anxiety or depression, PRISM recipients reported greater 6‐month improvements in hope (score change, +3.71; SD, 6.9) versus UC recipients (score change, −2.76; SD, 6.5) (p = .04). Conclusions Resilience coaching did not influence outcomes in this sample. Exploratory findings suggest it may be more effective when directed toward those with concurrent distress.
... Over the past 20 years, multiple organizations, including LiveSTRONG Young Adult Alliance, 68 ESMO/SIOPE Joint Working Group International Workshop, 69 and NCCN, 70 issued guidelines on core components of quality AYA cancer care including a focus on age-specific support and calls to advance research efforts. Change it Back created a Centers of Excellence Program to standardize and improve AYA oncology care, which unfortunately did not persist. ...
Article
Access to care remains a persistent challenge for adolescents and young adults (AYAs) with cancer. We review key findings in the science to date. (1) Location of care matters. There is survival benefit for AYAs treated either at a pediatric center or site with special status (eg, Children's Oncology Group, National Cancer Institute [NCI]–designated Comprehensive Cancer Center). (2) Socioeconomic status and insurance require further investigation. Medicaid expansion has had a moderate effect on AYA outcomes. The dependent care expansion benefit has come largely from improvements in coverage for younger populations whose parents have insurance, while some subgroups likely still face insurance gaps. (3) Clinical trial enrollment remains poor, but access may be improving. Numerous barriers and facilitators of clinical trial enrollment include those that are system level and patient level. NCI has established several initiatives over the past decade to improve enrollment, and newer collaboratives have recently brought together multidisciplinary US teams to increase clinical trial enrollment. (4) Effective AYA programs require provider and system flexibility and program reflection. With flexibility comes a need for metrics to assess program effectiveness in the context of the program model. Centers treating AYAs with cancer could submit a subset of metrics (appropriate to their program and/or services) to maintain their status; persistence would require an entity with staying power committed to overseeing the metrics and the system. Substantial clinical and biological advances are anticipated over the next 20 years that will benefit all patients with cancer. In parallel, it is crucial to prioritize research regarding access to health care and cancer care delivery; only with equitable access to care for AYAs can they, too, benefit from these advances.
... [1][2][3] AYAs are a vulnerable population at risk for inferior quality cancer care. 1,4,5 However, the quality of care AYAs receive at the end of life remains incompletely understood. Existing work has identified high rates of medically intensive measures such as intensive care unit (ICU) admissions and hospitalizations at the end of life among AYAs 6-10 but without considering more comprehensive issues such as pain and symptom management, use of hospice and palliative care, and psychological and spiritual support. ...
Article
Adolescents and young adults (AYAs) receive high rates of medically intensive measures at the end of life, but less is known about other measures of quality cancer care, such as use of palliative care and hospice, symptom management, and psychological support. We conducted a review of electronic health data and medical records for 1,929 AYAs age 12-39 years who died after receiving cancer care at one of three sites (Dana-Farber Cancer Institute, Kaiser Permanente Northern California, and Kaiser Permanente Southern California) between 2003 and 2019, including medical care and treatment, assessment and management of physical and psychological symptoms, and support of psychosocial and spiritual needs. We found that AYAs frequently received medically intensive measures, including late-life emergency room visits (25% with two or more in the last month) and intensive care unit (ICU) admissions (31%). However, most also received palliative care (73%) and hospice (62%). Just over half (58%) received psychosocial care in the last 90 days of life, and 49% received spiritual care, with an additional 7% declining spiritual care. Nearly all patients had pain assessed in the last 90 days of life, but only 34% had assessment for depression and 40% for anxiety. In summary, this study found that AYAs often receive medically intensive measures at the end of life, including ICU care in nearly a third, but most also receive palliative care and hospice. Suboptimal rates of psychosocial and spiritual care and assessment of psychological symptoms offer an opportunity to better address emotional and spiritual distresses at the end of life in this young population.
... 87 The importance of quality psychosocial care to address the breadth and intensity of AYAs' diverse needs has been routinely emphasized by national organizations and AYA-focused collaboratives. 1,8,88,89 Despite this, comprehensive psychosocial support is not always part of standard care and may not be delivered in a timely fashion. 56 To address this gap, emerging research has highlighted the value of collaborative engagement among multidisciplinary teams and key stakeholders, developmentally appropriate care, and broad-based needs assessments with workflow integration to ensure connections between AYAs and appropriate psychosocial services. ...
Article
Individuals diagnosed with cancer as adolescents and young adults (AYAs; ages 15–39 years) face unique vulnerabilities. Compared with individuals diagnosed when younger (≤14 years) or older (≥40 years), AYAs have not seen the same improvement in survival. Furthermore, they sit at a complex moment of social, emotional, and cognitive development, and have a unique interface with the healthcare system. With these observations, NCI prioritized addressing the unique vulnerabilities among AYAs with cancer, and NCCN developed guidelines regarding optimal AYA cancer care. Improvements in certain locales have been seen in the wake of this focus on AYAs, suggesting that continuing to consider AYA outcomes in the context of their specific needs is critical as we strive toward additional improvements. However, it is key to consider the drivers of these outcomes to continue this trajectory. This review presents a holistic conceptual model that includes factors that influence outcomes among AYAs with cancer, including domains in these levels that influence both clinical outcomes (such as relapse and survival) and health-related quality of life (HRQoL). These include domains at the patient level, such as social constructs (race/ethnicity, socioeconomic status), behavior (adherence, risk-taking), biologic characteristics (cancer biology, host genetics), medical treatment (treatment regimen, risk-based survivorship care), and treatment-related toxicities. The model also includes domains at the system level, which include treatment location (NCI designation, facility model, AYA program presence), clinical trial enrollment, transdisciplinary communication, fertility preservation, and psychosocial support. Recognizing these multiple factors at the level of the individual and the healthcare system influence AYA outcomes (from HRQoL to survival), it is key not only to consider patient-level interventions and development of novel cancer agents but also to develop systems-level interventions that can be executed in parallel. In this way, the impact can be expanded to a vast number of AYAs.
Article
Background Cutaneous malignant melanoma (CMM) ranks among the five most common cancers in young people in high‐income countries and it features peculiar clinicopathological traits. Very few studies have addressed the quality of care and the costs for adolescents and young adults (AYA) population. Objective To provide a comprehensive epidemiological and clinicopathological profile of CMM in AYA. The study also addresses the cost‐of‐illness and the diagnostic‐therapeutic performance indicators by patient age category. Methods This population‐based cohort study included 2435 incident CMM (age range 15–65 years; age 15–39 = 394; age 40–65 = 2041), as recorded in 2015, 2017 and 2019 by the Regional Veneto Cancer Registry (Italy). Cramer's‐ V tested the strength of association between pairs of variables. The Kaplan–Meier method was used to test the association between age and survival rate. The clinical performance indicators were computed using the Clopper–Pearson exact method. Results In AYA patients (16.2%), CMM incidence rates increased significantly from 1990 to 2019. Low‐stage CMM ( p = 0.007), radial growth pattern ( p = 0.026) and lower Clark levels ( p = 0.007) prevailed; males had less advanced malignancies ( p = 0.003), with the trunk as the most common primary site (67.5%); the lower limbs (32.6%) were the most common primary site for females ( p < 0.001). Overall survival was better in AYA than adults. No significant difference was detected in the clinical management of the two age groups, with the only exception of the margin in wide local excision. The care costs were lower in AYA (€195.99 vs. €258.94, p = 0.004). Conclusion In AYA patients, the CMM clinicopathological presentation shows a distinctive profile. The present results provide critical information for optimizing primary and secondary prevention strategies and for tailoring diagnostic therapeutic procedures to the peculiar profile of AYA CMM patients.
Article
Full-text available
Background Yoga may reduce negative cancer- and treatment-related effects and help improve a range of outcomes, including flexibility, mindfulness, and quality of life among adults affected by cancer. Yet there is little evidence for the role of yoga among young adults (18–39 years) affected by cancer. Purpose The purpose of this study was to explore the experiences of young adults affected by cancer in an 8-week yoga intervention delivered by videoconference. Methods Young adults who were diagnosed with cancer between the ages of 18 and 39 years, at any stage of the cancer trajectory, who were living in Canada, and who completed an 8-week yoga intervention were approached to complete a semi-structured interview. A social constructivist paradigm was adopted. Interviews were transcribed verbatim and analyzed using reflexive thematic analysis. Results Twenty-eight young adults (Mean age = 34.67 ± 5.11 years; n = 25 female) with varied cancer diagnoses participated. Participants’ perspectives were represented across 6 themes: (1) I was juggling a number of challenges and changes throughout the yoga intervention; (2) I noticed some improvements in my mental and physical health; (3) I made time to discover new strategies to take care of myself; (4) I was able to see what my body is capable of; (5) I was held accountable and I appreciated that, and; (6) I was able to be around similar others in a safe (virtual) space. Conclusions Findings suggest that an 8-week yoga intervention may offer some benefits for young adults affected by cancer. Self-care, self-compassion, mindfulness, feelings of physical competence, establishing a routine, and being around similar others were viewed as important components of the intervention and may have contributed to the benefits experienced. Findings underscore the potential utility of yoga as a supportive care intervention for young adults affected by cancer.
Article
Palliative care (PC) aims to improve quality of life (QOL) for patients with serious illness and their families by recognizing and alleviating the physical, emotional, social, existential, and spiritual suffering of patients and their communities. Because adolescents and young adults (AYAs, age 15-39 years) with cancer commonly report distress across all these domains and because that distress translates to their QOL during and after their cancers, PC is particularly relevant for this population. Here, we review the evidence for PC among AYAs with cancer, including its rationale, gaps, opportunities, and implications for care delivery. For example, nearly 90% of AYAs with cancer report distressing symptoms during their treatment, those who survive report ongoing unmet psychosocial and physical health needs, and those who die from their cancers are highly likely to receive medically intense care that is discordant with their goals and values. AYA communication and decision making can be challenging because of ethical and developmental considerations regarding the patient's autonomy and competing priorities of patients and caregivers. PC interventions (including primary PC delivered by oncologists, routine PC subspecialty care, symptom tracking, advance care planning, and psychosocial programs promoting AYA resilience) are all associated with improved patient-centered outcomes. However, PC is inconsistently integrated into AYA oncology care, and access to PC programs is not equitable; marginalized groups continue to experience poorer outcomes. Ongoing and future research and clinical initiatives must continue to bridge these gaps. Improving the QOL of AYAs with cancer is a shared goal of the larger clinical oncology community, and including PC in AYA cancer care delivery can help attain that goal.
Article
Importance: The patient-clinician therapeutic alliance is an important aspect of high-quality cancer care. However, components of the therapeutic alliance in adolescents and young adults (AYAs, aged 12-39 years) with cancer have not been defined. Objective: To identify components of and barriers to the therapeutic alliance between AYAs, caregivers, and clinicians from the perspective of all key stakeholders. Design, setting, and participants: In this qualitative study, semistructured in-depth interviews with patients, caregivers, and clinicians were conducted from 2018 to 2021 with no additional follow-up, with content analysis of resulting transcripts. Participants were recruited from Dana-Farber Cancer Institute, Kaiser Permanente Northern California, Kaiser Permanente Southern California, and an online cancer support community (Cactus Cancer Society). Eligible participants were English- or Spanish-speaking. Eligible patients were aged 12 to 39 years with stage IV or recurrent cancer. Eligible caregivers cared for an AYA living with advanced cancer or one who had died within 5 years. Eligible clinicians routinely provided care for AYAs with cancer. Main outcomes and measures: Perspectives on therapeutic alliance. Results: Interviews were conducted with 80 participants: 23 were patients (48% were female; 78% were White), 28 were caregivers (82% were female; 50% were White), and 29 were clinicians (69% were female; 45% were White). The mean (SD) age of patients was 29 (7.3) years. Interviews identified 6 components of therapeutic alliance: (1) compassion; (2) sense of connection; (3) clinician presence; (4) information sharing; (5) shared goals; and (6) individualization of care. While some domains were represented in prior models of therapeutic alliance, a unique domain was identified related to the need for individualization of the approach to care for AYA patients and their caregivers. Interviews also identified potential barriers to building the therapeutic alliance specific to the AYA population, including managing discordant needs between patients and caregivers and communication challenges at the end of life. Conclusions and relevance: This study identified core components and barriers to building therapeutic alliance in the AYA advanced cancer population from the perspective of all the key stakeholders in the relationship. A novel component highlighting the need for individualization was identified. This model enables a deeper understanding of how to build therapeutic alliance in the AYA advanced cancer population, which may guide clinician training and facilitate improved care for this vulnerable population.
Article
This selection from the NCCN Guidelines for Adolescent and Young Adult (AYA) Oncology focuses on considerations for the comprehensive care of AYA patients with cancer. Compared with older adults with cancer, AYA patients have unique needs regarding treatment, fertility counseling, psychosocial and behavioral issues, and supportive care services. The complete version of the NCCN Guidelines for Adolescent and Young Adult (AYA) Oncology addresses additional aspects of caring for AYA patients, including risk factors, screening, diagnosis, and survivorship.
Article
Full-text available
A sizable body of literature exists for young adult survivors of childhood cancer but relatively little is known about the health and supportive care needs of older adolescent and young adult cancer survivors. This project assessed priority health and supportive care needs for young adult patients and off-treatment survivors. 1,088 cancer patients and off-treatment survivors (age 18-39, diagnosed between the ages of 15-35) rank ordered a series of health and supportive care needs. Item rank scores were calculated to prioritize lists of needs for patients receiving treatment and off-treatment survivors, respectively. Differences in rankings based on respondent age, age at diagnosis, years since diagnosis, gender and treatment status (currently receiving treatment or off-treatment) were examined. Availability of state-of-the-art treatment specific to this age-group and having adequate health insurance were the most highly-ranked health care needs. Support from family and friends were the most highly ranked supportive care needs, although younger respondents attributed greater importance to support from family and friends. Older respondents attributed greater importance to availability of age-appropriate information, psychological counseling, and being responsible for one's own health care and decision-making. Younger respondents reported significantly higher needs for fertility information and services and for scheduling treatments to fit their lifestyles. Needs of adolescents and young adults with cancer vary along a continuum of care, from diagnosis and treatment through survivorship. Findings emphasize the value of age-appropriate resources and peer support. The study offers direction for delivering services to what previously has been an underserved population.
Article
Full-text available
Patients 16 to 21 years of age with acute lymphoblastic leukemia (ALL) have an inferior outcome compared with younger children, leading some medical oncologists to advocate allogeneic stem-cell transplantation in first remission for these patients. We examined outcome for young adults with ALL enrolled onto the Children's Cancer Group (CCG) 1961 study between 1996 and 2002. CCG 1961 entered patients with ALL 1 to 21 years of age with initial WBC count > or = 50,000/microL and/or age > or = 10 years. Randomly assigned therapies evaluated the impact of postinduction treatment intensification on outcome. We examined outcome and prognostic factors for 262 young adults with ALL. Five-year event-free and overall survival rates for young adult patients are 71.5% (SE, 3.6%) and 77.5% (SE, 3.3%), respectively. Rapid responder patients (< 25% bone marrow blasts on day 7) randomly assigned to augmented therapy had 5-year event-free survival of 81.8% (SE, 7%), as compared with 66.8% (SE, 6.7%) for patients receiving standard therapy (P = .07). One versus two interim maintenance and delayed intensification courses had no significant impact on event-free survival. WBC count more than 50,000/microL was an adverse prognostic factor. Young adult patients with ALL showing a rapid response to induction chemotherapy benefit from early intensive postinduction therapy but do not benefit from a second interim maintenance and delayed intensification phase. Given the excellent outcome with this chemotherapy, there seems to be no role for the routine use of allogeneic stem-cell transplantation in first remission for young adults with ALL.
Article
Full-text available
To compare pediatric and adult therapeutic practices in the treatment of acute lymphoblastic leukemia (ALL) in adolescents. From June 1993 to September 1994, 77 and 100 adolescents (15 to 20 years of age) were enrolled in the pediatric FRALLE-93 and adult LALA-94 protocols, respectively. Among the different prognostic factors, we retrospectively analyzed the effect of the trial on achieving complete remission (CR) and event-free survival (EFS). Patients were younger in the FRALLE-93 than in the LALA-94 protocol (median age, 15.9 v 17.9 years, respectively), but other characteristics were similar, including median WBC count (18 x 10(9) cells/L v 16 x 10(9) cells/L), B/T-lineage (54 of 23 v 72 of 28 patients), CD10-negative ALL (13% v 15%), and poor-risk cytogenetics (t(9;22), t(4;11), or hypodiploidy less than 45 chromosomes: 6% v 5%). The CR rate depended on WBC count (P =.005) and trial (94% v 83% in FRALLE-93 and LALA-94, respectively; P =.04). Univariate analysis showed that unfavorable prognostic factors for EFS were as follows: the trial (estimated 5-year EFS, 67% v 41% for FRALLE-93 and LALA-94, respectively; P <.0001), an increasing WBC count (P <.0001), poor-risk cytogenetics (P =.005), and T-lineage (P =.01). The trial and WBC count remained significant parameters for EFS in multivariate analysis (P <.0001 and P =.0004). Lineage subgroup analysis showed an advantage for the FRALLE-93 trial for CR achievement (98% v 81%; P =.002) and EFS (P =.0002) in B-lineage ALL and for EFS (P =.05) in T-lineage ALL. Age was not a significant prognostic factor in this population of adolescents. This study's findings indicate that adolescents should be included in intensive pediatric protocols and that new trials should be designed, inspired by pediatric protocols, for the treatment of young adults with ALL.
Article
We outline here the essential elements of training for health care professionals who work with adolescent and young adult (AYA) patients with cancer. Research is emerging that a number of cancers manifest themselves differently in the AYA population, both in terms of biology and treatment response. In addition, there are a number of issues uniquely experienced by the AYA population that are critical for health care professionals working within AYA oncology (AYAO) to understand. The LIVESTRONG Young Adult Alliance, a Lance Armstrong Foundation program and a result of the Adolescent and Young Adult Oncology Progress Review Group cosponsored by the Lance Armstrong Foundation and the National Cancer Institute, assembled a group of experts representing relevant medical, psychosocial, and advocacy disciplines to create a blueprint for the training and development of health care professionals caring for AYA patients with cancer. The Alliance recommends that all health care professionals working in AYAO receive training that provides expertise in the following three critical areas: AYA-specific medical knowledge; care delivery specific to AYAs relative to pediatric and older adult populations; and competency in application and delivery of AYA-specific practical knowledge. These three areas should form the foundation for curricula and programs designed to train health care professionals caring for AYAO patients.
Article
To examine differences in non-Hodgkin lymphoma (NHL) survival between young adults and children/adolescents. Survival analysis using 13 Surveillance, Epidemiology, and End Results registries. Cancer survival information from population-based cancer registries from 1992 through 2001. A total of 2442 cases of NHL among children/adolescents (aged 0-19 years) and young adults (aged 20-29 years). Differences in NHL survival between young adults and children. Comparison of 5-year survival by constructing Kaplan-Meier survival curves and modeling 5-year survival with multivariate Cox proportional hazards. Young adults were more likely to die compared with children/adolescents (hazard ratio = 2.06; 95% confidence interval, 1.65-2.56) even after accounting for NHL subtype and stage at diagnosis. Persons diagnosed with stage III disease (hazard ratio = 1.71; 95% confidence interval, 1.20-2.46) and stage IV disease (hazard ratio = 3.19; 95% confidence interval, 2.47-4.13) were more likely to die compared with persons diagnosed with stage I disease. Being a young adult at diagnosis and having a higher stage of disease at diagnosis were associated with higher risk of death from NHL. Increasing survival with NHL is dependent on receiving appropriate cancer therapy. Therefore, efforts to address survival should include improving enrollment in clinical trials as well as increasing access to care.
Article
At the crossroads between pediatric and older adult groups, young adults with cancer may be underserved or inadequately or inappropriately served by existing support services. Empirical evidence has not established well the extent to which utilization of psychosocial support services delivered throughout a continuum of care results in desired outcomes. If self-efficacy is demonstrated to play a significant role in promoting quality of life and psychological well-being in young adult cancer patients, then a cancer-specific self-efficacy model can serve as an evidence-based framework for developing, implementing, and testing new interventions. A focus on self-efficacy has the potential to promote young adults' abilities to remain active and independent, seek and understand medical information, manage stress, cope with treatment-related side effects, maintain a "positive attitude," regulate emotions, and seek social support. Future research should aim to identify which patients represent at-risk targets for intervention, as well as the most appropriate time points along the continuum of care at which patients/survivors are most likely to benefit from delivery/utilization of psychosocial support services.
Article
Among 20- to 39-year-olds, cancer causes more deaths than any other disease except depression that culminates in suicide. More females in the age group die of cancer than of the next three causes combined. Yet, substantially less attention has been given to young adults than to children and older adults, and the relative improvement in the survival rate in young adults has not kept pace with that achieved in younger or older patients. Additionally, there is evidence that a substantial proportion of the cancers in young adults have a different biology, and probably etiology/pathogenesis, than that of what appears to be the same cancer in younger or older persons. The challenges of early detection, diagnosis, treatment, and follow-up are therefore likely to be distinctly different than in persons of a different age. As an introduction to this Seminars in Oncology issue on young adults with malignant disease, this overview summarizes cancer epidemiology, risk factors, survival, racial/ethnic and gender differences, diagnostic and treatment approaches, psychosocial challenges, and current organizational research and supportive care strategies in young adults.
Article
For young people with cancer their process through adolescence is marked with disruption. The demands of treatment and resulting social isolation combined with issues of body image/self-esteem complicate this turbulent life cycle transition. The effects of'these disruptions require psychosocial staff to utilize creative approaches to treatment. The framework of the Teen Outreach Program (TOP) is to connect teens with leukemia/lymphoma to one another, and to reconnect them back with their peers by engaging them in "normal" events. The overwhelming response highlights the positive effect on teenagers' psychosocial health, thereby solidifying the importance of providing innovative therapeutic interventions for this under-serviced population. Further studies of the long-term impact of the program's success are warranted.