scispace - formally typeset
Search or ask a question
Journal ArticleDOI

Adolescent and young adult oncology training for health professionals: a position statement.

10 Nov 2010-Journal of Clinical Oncology (American Society of Clinical Oncology)-Vol. 28, Iss: 32, pp 4858-4861
TL;DR: The LIVESTRONG Young Adult Alliance, a Lance Armstrong Foundation program and a result of the Adolescent and Young Adult Oncology Progress Review Group, 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.
Abstract: 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.
Citations
More filters
Journal ArticleDOI
TL;DR: It is recommended that young adults ages 18-26 years be treated as a distinct subpopulation in policy, planning, programming, and research, and action is taken in three priority areas to improve health care for young adults.

375 citations


Cites background from "Adolescent and young adult oncology..."

  • ...Recent longitudinal research by Pollard and Harris (2013) examines a wide array of health indicators, including general health status, mental health, health behavior (regular physical exam, binge drinking, tobacco use, physical exercise), and body mass index among cohabiting versus married and single young adult men and women, controlling for health selection prior to union formation....

    [...]

Journal ArticleDOI
TL;DR: Recommendations offered 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.
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 position 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 ultima...

194 citations


Cites background from "Adolescent and young adult oncology..."

  • ...The companion manuscript “Adolescent and Young Adult Oncology Training for Health Professionals: A Position Statement” addresses the elements of training and education that health professionals committed to the care of AYAs should receive.(23)...

    [...]

Journal ArticleDOI
TL;DR: In this article, the authors reviewed published psychological interventions for adolescents and young adults (AYAs) with chronic illnesses, including cancer, diabetes, juvenile idiopathic arthritis, sickle cell disease, and asthma.
Abstract: Objective There is increasing recognition that adolescents and young adults (AYAs) with chronic illnesses experience common psychological challenges. This article reviewed published psychological interventions for AYAs with cancer, diabetes, juvenile idiopathic arthritis, sickle cell disease, and asthma. Common, efficacious intervention components were examined to generate clearer recommendations for future age-appropriate, evidence-based intervention development. Methods Five databases including MEDLINE, MEDLINE In Process & Non-Indexed Citations, PsycINFO, EMBASE, and CINAHL, were searched for studies involving AYAs aged 10-30 years, using quantitative two-group methods, published from 1979-2010. Of 1,233 abstracts, 87 were extracted for further analysis and a final 25 studies were eligible for inclusion. Thirteen of these studies included AYAs with diabetes, 7 studies involved AYAs with cancer, and 5 included AYAs with other illnesses. Results Educational interventions showed some significant positive results, particularly when targeted knowledge outcomes were measured. Several skills-based programs, some including parents, showed positive results, with moderate effect sizes. Interventions which taught communication skills, incorporated practical components (e.g., role-plays, homework), involved ≥6 sessions, and spanned at least 3 months in length, appeared more likely to achieve positive outcomes. Conclusions Skills-based interventions delivered over multiple sessions may yield the most positive results in AYAs with chronic illness. Given the few peer-support groups eligible for review, their efficacy remains unclear. This review points to the need for intervention development that teaches adaptive coping skills, is grounded in theoretical frameworks, and adheres to strict randomization and independent assessments to evaluate efficacy in assisting AYAs adjust to chronic illness.

129 citations

Journal ArticleDOI
TL;DR: This special edition of Journal of Clinical Oncology indicates how far AYAO has come during the past few years and reviews overarching topics of clinical care of AYA cancer, rather than focus on specific diseases.
Abstract: The emergence of adolescent and young adult oncology (AYAO) illustrates many features of new fields of endeavor. What are these features? The most important is a clear clinical need. Cancer is the leading disease-related cause of death in young adults in the United States and affects eight times as many individuals between the ages of 15 and 40 as those younger than 15 years of age. These dry figures are given a human voice from patients themselves, expressed through grass-roots advocacy organizations, Web sites, philanthropic efforts, blogs, books, and conferences. A new field should appeal to practitioners and researchers from many existing fields. AYAO has relevance to many aspects of oncology, from basic biology through health services and treatment to psycho-oncology. This special edition of Journal of Clinical Oncology indicates how far AYAO has come during the past few years. In this issue, we sought in the main to review overarching topics of clinical care of AYA cancer, rather than focus on specific diseases. There is much of relevance to many readers: pediatric and medical oncologists, psychologists, radiation oncologists, reproductive endocrinologists, nurses, and palliative care specialists—all who work closely with AYAs with cancer. Many of the themes addressed have broad relevance to AYA health and we hope will contribute to improvements for AYAs with chronic or severe endocrine, gastrointestinal, and respiratory illnesses. It is clear that some cancers that affect young people have worse outcomes than others: leukemias, brain tumors, epithelial cancers and sarcomas. Furthermore, various findings suggest that tumor biology and clinical outcome for a given tumor vary in different age groups, thus suggesting tailored approaches according to patient’s age. In this issue, Kieran et al draw attention to the complex range of brain tumors seen in a population bridging childhood to adulthood. A recurrent theme is the fact that “childhood” tumors (medulloblastoma, for example) may be seen in adults, even as “adult” tumors may still affect adolescents. This raises an important question: is it reasonable to extrapolate from treatment paradigms used in noncognate populations to older or younger patients? Oncology treatments— chemotherapy as well as surgery and radiotherapy—are far from innocuous. In an excellent review, Veal et al point out the surprising gap in pharmacologic data on cytotoxics in adolescence and young adulthood. This is partly a result of the artificial divide between pediatric and adult medicine into which young patients often fall, to their detriment. Differences in anthropometric measures, body composition, size, and maturity of organs, as well as hormonal status, may directly influence the disposition and clearance of drugs, the susceptibility to treatment morbidity, even the relationship between the tumor cells and the host. A child is not a “small adult” and does not become an adult on a given birthday or at a given weight. It is unclear to what extent one can apply drug dosing or treatment regimens between pediatric and adult populations, although this is frequent in practice. Another problem is that young people may be less compliant with recommended treatments than other age groups, for the many reasons discussed by Butow et al. Reviewing the literature, they find that 27% to 60% of young people may be poorly adherent to cancer treatment, which obviously may affect cancer survival rates in this population. This problem may only become more significant as the number of orally available treatments increase. Fortunately, the great majority of childhood, adolescent, and young adult patients with cancer will survive their cancer diagnosis and will constitute a sizeable fraction of the community. The quality of survivorship is critical to any assessment of the quality of treatment. Although there are few data on young adult cancer survivorship, the landmark Children’s Cancer Survivorship Study has revealed an unexpected burden of morbid sequelae for young adult survivors of childhood cancer. Again, the health care delivery system has not determined how best to care for this population. Freyer argues that systematic health care transition constitutes the standard of care for young adult survivors of childhood cancer, and discusses current research on their medical needs, current models, and innovative approaches for follow-up care. Unfortunately, not all young people will survive a cancer diagnosis. Palliative care is a particularly challenging area of young adult oncology, on the basis of the gathering experience of those who work with young people dying from cancer and their families. The unique features of palliative care in this age group, where death is incongruous and tragic, are introduced by Wein et al in this issue. An example is communication among the dying person, the family, and the treating team. By comparing experiences in Israel and Australia in young adult palliative care, Wein et al reflect on how cultural taboos influence discussions about death and dying and are accentuated for young patients. Sexuality, fertility, drug use, and the Internet are important subjects for young people, with or without cancer. The cultural context of youth changes faster than any other age group, and clinicians who care JOURNAL OF CLINICAL ONCOLOGY O V E R V I E W VOLUME 28 NUMBER 32 NOVEMBER 1

122 citations

Journal ArticleDOI
TL;DR: There is substantial variability in the age ranges used by authors to define the adolescent and young adult group, and it is feared that failing to clearly delineate age ranges could be a substantial barrier to advancing clinical care and research for a population known to be at risk for poorer cancer outcomes.
Abstract: TO THE EDITOR: We were extremely pleased to see Journal of Clinical Oncology promoting awareness of the unique treatment issues that involve adolescents and young adults diagnosed with cancer by publishing an issue devoted to this topic on November 10, 2010. As noted in the overview by Thomas et al, this is an emerging field with implications for a broad array of health care providers and the health care system itself. Challenges particular to cancer outcomes in this group include biologic variation in tumors, treatment effectiveness and tolerance, adherence, fertility preservation, and early death. Because these challenges vary by age among adolescents and young adults, we were interested to note the substantial variability in the age ranges used by authors to define this group. A majority of authors adopted the strategy of describing ages in cited studies or reports without explicitly stating the age range they intended to address. Perhaps the best example of this was in the article by Veal et al, who described epidemiologic data consistently beginning at age 15 years but with varying cutoffs at ages 24, 29, and 39 years of age. These authors also presented a summary table of clinical pharmacology studies in adolescents and young adults in which participants’ ages ranged from 0.04 to 54 years. The authors of the overview described adolescents and young adults as “between the ages of 15 and 40.” Several authors explicitly stated age ranges. Butow et al adopted the World Health Organization definition of ages 12 to 24 years, whereas Wein et al and Ferrari et al described the age range as 15 to 29 years, with the possibility of including up to age 39 years. The challenge of defining age ranges for adolescents and young adults in the oncology context is not exclusive to the November 10, 2010, issue of JCO. The National Cancer Institute’s Adolescent and Young Adult Oncology Progress Review Group considered the issue carefully and focused their work on individuals diagnosed with cancer from ages 15 to 39 years. Yet a Surveillance, Epidemiology and End Results monograph about cancer epidemiology in adolescents and young adults published in the same year used a range of age 15 to 29 years. Other journals have feature issues that are similar to the November 10, 2010, issue of JCO, and have used a number of age ranges to describe the adolescent and young adult group. For example, in the May-June 2005 issue of Current Problems in Pediatric and Adolescent Health Care, the group was defined as “15 to approximately 30” years of age, although the only available survival statistics were from a group of patients who were 20 to 39 years of age. Professional organizations also differ; the Children’s Oncology Group’s Adolescents and Young Adults Committee defines the group as including age 15 to 29 years, whereasneedsofpatientsage15to39yearsareaddressed in the recently launched Focus Under Forty educational efforts of the American Society of Clinical Oncology and LIVESTRONG. Public data sources, clinics, and research studies vary widely in the age characterization of adolescents and young adults. Inconsistencies in defining an age range for adolescents and young adults are understandable given the realities of the complex biologic and psychosocial developmental processes experienced in the lengthy transition from childhood to adulthood in Western cultures. Treadgold and Kuperberg addressed this issue in the November 10, 2010, issue of JCO and noted that adolescents and young adults are not a “homogeneous entity.” They went on to point out the important differences in “lived experience” across the age span, which they define on the basis of emerging consensus as the “early teen years to the end of the thirties.” We sympathize with the challenges faced in defining appropriate age ranges for adolescents and young adults in the oncology context. Yet we also fear that failing to clearly delineate age ranges could be a substantial barrier to advancing clinical care and research for a population known to be at risk for poorer cancer outcomes than those diagnosed with cancer at younger or older ages. Thus, we urge that all communications from this emerging field explicitly define the age range being addressed and the rationale for that range. In addition to facilitating comparisons of clinical experiences and research findings from groups of adolescents and young adults, presenting a rationale for each age range selection will help identify situations in which the entire group can reasonably be considered together versus those in which narrower age ranges may be more appropriate. Without explicit age range definitions that are grounded in careful thought, progress in oncology care and research for adolescents and young adults may be slowed.

100 citations


Cites background from "Adolescent and young adult oncology..."

  • ...A majority of authors adopted the strategy of describing ages in cited studies or reports without explicitly stating the age range they intended to address.(2-7) Perhaps the best example of this was in the article by Veal et al,(8) who described epidemiologic data consistently beginning at age 15 years but with varying cutoffs at ages 24, 29, and 39 years of age....

    [...]

References
More filters
Journal ArticleDOI
TL;DR: The findings of this study 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.
Abstract: Purpose: To compare pediatric and adult therapeutic practices in the treatment of acute lymphoblastic leukemia (ALL) in adolescents. Patients and Methods: 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). Results: 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 × 109 cells/L v 16 × 109 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 s...

563 citations


"Adolescent and young adult oncology..." refers result in this paper

  • ...Furthermore, recent studies have found differences in outcomes for AYAs in certain cancers depending on whether they were treated on pediatric or adult protocols.(1,2,4,5) Thus far, the clearest examples of this treatment outcome disparity are the recent retrospective analyses that found better outcomes for AYA patients with acute lymphoblastic leukemia treated on pediatric protocols compared with those reported for adult protocols....

    [...]

  • ...Thus far, the clearest examples of this treatment outcome disparity are the recent retrospective analyses that found better outcomes for AYA patients with acute lymphoblastic leukemia treated on pediatric protocols compared with those reported for adult protocols.(2,4,5) In addition to knowledge of tumor biology, an understanding of the dynamic developmental period from adolescence through the reproductive adult years is a necessary component of the care of AYA patients with cancer....

    [...]

Journal ArticleDOI
TL;DR: Translational and clinical research should not assume that the biology of cancers and patients is the same as in other age groups, and treatment strategies should be tailored to the differences.
Abstract: One explanation for the relative lack of progress in treating cancer in adolescents and young adults is that the biology of malignant diseases in this age group is different than in younger and older persons, not only in the spectrum of cancers but also within individual cancer types and within the patient (host). Molecular, epidemiological and therapeutic outcome comparisons offer clues to this distinctiveness in most of the common cancers of adolescents and young adults. Translational and clinical research should not assume that the biology of cancers and patients is the same as in other age groups, and treatment strategies should be tailored to the differences.

551 citations


"Adolescent and young adult oncology..." refers result in this paper

  • ...Furthermore, recent studies have found differences in outcomes for AYAs in certain cancers depending on whether they were treated on pediatric or adult protocols.(1,2,4,5) Thus far, the clearest examples of this treatment outcome disparity are the recent retrospective analyses that found better outcomes for AYA patients with acute lymphoblastic leukemia treated on pediatric protocols compared with those reported for adult protocols....

    [...]

  • ...Thus far, the clearest examples of this treatment outcome disparity are the recent retrospective analyses that found better outcomes for AYA patients with acute lymphoblastic leukemia treated on pediatric protocols compared with those reported for adult protocols.(2,4,5) In addition to knowledge of tumor biology, an understanding of the dynamic developmental period from adolescence through the reproductive adult years is a necessary component of the care of AYA patients with cancer....

    [...]

Journal ArticleDOI
01 Sep 2008-Blood
TL;DR: Comparison of the regimens showed that CCG AYAs received earlier and more intensive central nervous system prophylaxis and higher cumulative doses of nonmyelosuppressive agents and there were no differences in outcomes of those who reached maintenance therapy on time compared with those who were delayed.

450 citations

Journal ArticleDOI
TL;DR: Whereas the 15‐ to 29‐year age group once had a better overall survival rate than either younger or older patients, a relative lack of progress has resulted in the majority of cancers in the age group having a worse overall survival rates than in younger patients, and several of theseHaving a worse prognosis than in older patients.
Abstract: One in every 168 Americans develops invasive cancer between age 15 to 30 years. During this age interval, cancer is unique in the distribution of types that occur and rarely related to either environmental carcinogens, a recognizable inherited predisposition, or a family cancer syndrome. Patients in this age group have the lowest rate of health insurance coverage, frequent delays in diagnosis, and the lowest accrual to clinical trials. Their psychosocial needs are unique and generally less well attended to than in any other age group. Despite an intrinsically equal ability to tolerate chemotherapy, older adolescents and young adults frequently receive lower dose intensities than do younger patients, and at times less than in older patients. Whereas the 15- to 29-year age group once had a better overall survival rate than either younger or older patients, a relative lack of progress has resulted in the majority of cancers in the age group having a worse overall survival rate than in younger patients, and several of these having a worse prognosis than in older patients. Against this background, young adults with cancer have unique survival challenges--medically, psychosocially, and economically--that are now beginning to be appreciated and addressed with a national initiative.

249 citations


"Adolescent and young adult oncology..." refers background in this paper

  • ...These transitions bring additional considerations into cancer treatment decisions, such as lack of insurance, fertility preservation, and logistical challenges that can contribute to delays in diagnosis and lack of adherence to care plans, that are often not issues for older or younger patient populations.(1,6,7) Generating and delivering treatment care JOURNAL OF CLINICAL ONCOLOGY S P E C I A L A R T I C L E VOLUME 28 NUMBER 32 NOVEMBER 10 2010...

    [...]

Journal ArticleDOI
TL;DR: Recommendations offered 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.
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 position 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 ultima...

194 citations