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

2010 ◽  
Vol 28 (32) ◽  
pp. 4862-4867 ◽  
Author(s):  
Brad Zebrack ◽  
Beth Mathews-Bradshaw ◽  
Stuart Siegel
Keyword(s):  
Young Adult ◽  
Health Care Professionals ◽  
Access To Health Care ◽  
Quality Care ◽  
Position Statement ◽  
Adolescent And Young Adult ◽  
Standards Of Care ◽  
Psychosocial Needs ◽  
Patients With Cancer ◽  
Care Guidelines

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 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. 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.

Adolescent and Young Adult Oncology Training for Health Professionals: A Position Statement

2010 ◽  
Vol 28 (32) ◽  
pp. 4858-4861 ◽  
Author(s):  
Brandon Hayes-Lattin ◽  
Beth Mathews-Bradshaw ◽  
Stuart Siegel
Keyword(s):  
Health Care ◽  
Young Adult ◽  
Health Care Professionals ◽  
Care Delivery ◽  
Medical Knowledge ◽  
Position Statement ◽  
Essential Elements ◽  
Adolescent And Young Adult ◽  
Patients With Cancer ◽  
Young Adult Oncology

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.

Psychosocial Care of Adolescent and Young Adult Patients With Cancer and Survivors

2012 ◽  
Vol 30 (11) ◽  
pp. 1221-1226 ◽  
Author(s):  
Brad Zebrack ◽  
Sinéad Isaacson
Keyword(s):  
Young Adult ◽  
Identity Development ◽  
Psychosocial Support ◽  
Clinical Care ◽  
Quality Care ◽  
Psychosocial Care ◽  
Adolescent And Young Adult ◽  
Patients With Cancer ◽  
Positive Effects ◽  
Future Goals

The delivery of quality care for adolescent and young adult (AYA) patients with cancer and survivors requires an understanding of the unique qualities of this group—the shared norms, attitudes, and beliefs that determine their behavior as well as the unique stresses they face on a day-to-day basis. All AYAs have typical concerns about being comfortable with who they are and who they want to become (identity development, including sexual identity), their bodies (body image), initiating intimate and emotional relationships, separating from parents, and making independent decisions about future goals such as career, higher education, and/or family (autonomy). Yet efforts of AYA patients with cancer and survivors to mature are often confounded by restrictions and limitations placed on them by their disease and treatment. This article promotes understanding of psychosocial challenges faced by AYAs when diagnosed with and treated for cancer. It reviews evidence-based psychosocial support interventions for AYAs with cancer and other life-threatening or chronic diseases, particularly the positive effects of peer support, technology-based interventions, and skill-based interventions. The article concludes with recommendations for clinical care that are intended to promote the ability of AYAs to cope with cancer.

scholarly journals Young Adult Cancer Survivorship: Recommendations for Patient Follow-up, Exercise Therapy, and Research

2020 ◽  
Author(s):  
Scott C Adams ◽  
Jennifer Herman ◽  
Iliana C Lega ◽  
Laura Mitchell ◽  
David Hodgson ◽  
...  
Keyword(s):  
Young Adult ◽  
Late Effects ◽  
Adolescent And Young Adult ◽  
Future Research ◽  
Evidence Based ◽  
Pediatric Cancer Survivors ◽  
Increased Risk ◽  
Care Guidelines ◽  
Young Adult Cancer ◽  
Evidence Based Guidelines

Abstract Survivors of adolescent and young adult cancers (AYAs) often live 50 to 60 years beyond their diagnosis. This rapidly growing cohort is at increased risk for cancer- and treatment-related late effects that persist for decades into survivorship. Recognition of similar issues in pediatric cancer survivors has prompted the development of evidence-based guidelines for late effects screening and care. However, corresponding evidence-based guidelines for AYAs have not been developed. We hosted an AYA survivorship symposium for a large group of multidisciplinary AYA stakeholders (approximately 200 were in attendance) at Princess Margaret Cancer Centre (Toronto, ON) to begin addressing this disparity. The following overview briefly summarizes and discusses the symposium’s stakeholder-identified high-priority targets for late effects screening and care, and highlights knowledge gaps to direct future research in the field of AYA survivorship. This overview, while not exhaustive, is intended to stimulate clinicians to consider these high-priority screening and care targets when seeing survivors in clinical settings and, ultimately, support the development of evidence-based ‘late effects’ screening and care guidelines for AYAs.

scholarly journals Adolescent and young adult neuro-oncology: a comprehensive review

2021 ◽  
Author(s):  
Kee Kiat Yeo ◽  
Darcy E Burgers ◽  
Katelynn Brodigan ◽  
Karen Fasciano ◽  
A Lindsay Frazier ◽  
...  
Keyword(s):  
Young Adult ◽  
Reproductive Health ◽  
Tumor Biology ◽  
Psychosocial Care ◽  
Health Needs ◽  
Adolescent And Young Adult ◽  
Molecular Testing ◽  
Psychosocial Needs ◽  
Clinical Trials Enrollment ◽  
Diagnostic Work

Abstract Adolescent and young adult (AYA; ages 15-39) patients represent a population that experiences significant challenges in cancer care and research, exemplified by poorer clinical outcomes as well as unmet psychosocial and reproductive health needs. Despite central nervous system (CNS) tumors being one of the most common malignancies diagnosed in the age group, there is a clear paucity of AYA CNS tumor-specific publications, especially those related to the unique psychosocial and reproductive health needs of this population of patients. In this review, we examine various aspects of AYA oncological care including tumor biology, clinical outcome, clinical trials enrollment rate, site of care, unique psychosocial needs, and oncofertility. We assess the current state of these issues, highlight areas of deficiencies, and outline the steps needed to address these concerns. We emphasize the importance of comprehensive molecular testing as part of the diagnostic work-up, expansion of clinical trial availability, access to psychosocial care and oncofertility expertise, and the development of AYA-specific clinical research to define best practices and advancing care for this population.

scholarly journals Satisfaction and perceptions of research participants in clinical and translational studies: An urban multi-institution with CTSA

2020 ◽  
Vol 4 (4) ◽  
pp. 317-322
Author(s):  
Priscilla Adler ◽  
Jane Otado ◽  
John Kwagyan
Keyword(s):  
Clinical Trials ◽  
Health Care Professionals ◽  
Access To Health Care ◽  
Quality Care ◽  
Delivery Of Care ◽  
Participant Satisfaction ◽  
Research Participants ◽  
Care Access ◽  
Degree Of Satisfaction ◽  
Research Volunteers

AbstractPurpose:To examine research participants’ levels of satisfaction and perceptions and aid researchers to better engage research volunteers from all racial and ethnic populations in clinical trials. A participant satisfaction survey was developed that focused on three domains to reflect satisfaction with delivery of care, environment, and center operations. In addition, the survey contained open-ended questions to reflect overall experiences and perceptions. Two hundred and seventy-eight participants (55% African American and 29% non-Hispanic Whites) with an average age of 52 years completed the survey.Results:The results indicated that the majority of the participants rated their satisfaction very highly across all domains. Ninety percent stated they were very satisfied/satisfied or very strongly agreed/agreed in the three domains. Obtaining high-quality care/access to health care professionals (60%), learning more about their illness/disease (60%), and helping others (57%) were noted as important factors in choosing to participate in a trial. Regarding overall experience, majority of respondents stated that friendliness, expertise of staff, learning more about their disease, and contributing to science were important. Further, financial compensation was not a primary motivation for participation. A majority of participants stated that they would participate in future studies and would recommend a friend or a family member to participate in clinical trials.Conclusions:The findings indicate that the degree of satisfaction with the research staff and with the specific trial itself are important determinants for enrolling, completing a study, and for participating in future trials.

416: UNDERSTANDING RESILIENCE IN BEREAVED CAREGIVERS OF ADOLESCENT AND YOUNG ADULT PATIENTS WITH CANCER

2020 ◽  
Vol 48 (1) ◽  
pp. 189-189
Author(s):  
Jenny Kingsley ◽  
Mallory Taylor ◽  
Krysta Barton ◽  
R Watson ◽  
Abby Rosenberg
Keyword(s):  
Young Adult ◽  
Adult Patients ◽  
Adolescent And Young Adult ◽  
Patients With Cancer

scholarly journals The importance of assessing priorities of reproductive health concerns among adolescent and young adult patients with cancer

Cancer ◽  
2015 ◽  
Vol 121 (15) ◽  
pp. 2529-2536 ◽  
Author(s):  
Devin Murphy ◽  
James L. Klosky ◽  
Damon R. Reed ◽  
Amanda M. Termuhlen ◽  
Susan V. Shannon ◽  
...  
Keyword(s):  
Young Adult ◽  
Reproductive Health ◽  
Adult Patients ◽  
Adolescent And Young Adult ◽  
Health Concerns ◽  
Patients With Cancer

scholarly journals Fertility preservation knowledge, counseling, and actions among adolescent and young adult patients with cancer: A population-based study

Cancer ◽  
2015 ◽  
Vol 121 (19) ◽  
pp. 3499-3506 ◽  
Author(s):  
Margarett Shnorhavorian ◽  
Linda C. Harlan ◽  
Ashley Wilder Smith ◽  
Theresa H.M. Keegan ◽  
Charles F. Lynch ◽  
...  
Keyword(s):  
Young Adult ◽  
Fertility Preservation ◽  
Population Based ◽  
Adult Patients ◽  
Adolescent And Young Adult ◽  
Population Based Study ◽  
Patients With Cancer

Trajectories of Psychological Distress in Adolescent and Young Adult Patients With Cancer: A 1-Year Longitudinal Study

2013 ◽  
Vol 31 (17) ◽  
pp. 2160-2166 ◽  
Author(s):  
Minyoung Kwak ◽  
Brad J. Zebrack ◽  
Kathleen A. Meeske ◽  
Leanne Embry ◽  
Christine Aguilar ◽  
...  
Keyword(s):  
Psychological Distress ◽  
Young Adult ◽  
Symptom Burden ◽  
Brief Symptom Inventory ◽  
Adolescent And Young Adult ◽  
Cancer Type ◽  
Clinical Predictors ◽  
Population Norms ◽  
Patients With Cancer

Purpose To examine prevalence and changes in symptoms of psychological distress over 1 year after initial cancer diagnosis in adolescent and young adult (AYA) patients with cancer. Sociodemographic and clinical predictors of changes in distress were examined. Patients and Methods In this multisite, longitudinal, prospective study of an ethnically diverse sample, 215 patients age 14 to 39 years were assessed for psychological distress within the first 4 months of diagnosis and again 6 and 12 months later. Linear mixed models with random intercept and slope estimated changes in distress, as measured by the Brief Symptom Inventory-18 (BSI-18). Results Within the first 4 months of diagnosis, 60 respondents (28%) had BSI-18 scores suggesting caseness for distress. On average, distress symptoms exceeded population norms at the time of diagnosis, dipped at the 6-month follow-up, but increased to a level exceeding population norms at the 12-month follow-up. A statistically significant decline in distress over 1 year was observed; however, the gradient of change was not clinically significant. Multivariate analyses revealed that the reduction in distress over time was primarily a function of being off treatment and involved in school or work. Notably, cancer type or severity was not associated with distress. Conclusion Findings emphasize the importance of early psychosocial intervention for distress in AYAs as well as the need to manage treatment-related symptoms and facilitate AYAs' involvement in work or school to the extent possible. Continued research is needed to understand how distress relates to quality of life, functional outcomes, treatment, and symptom burden throughout the continuum of care.

Been There, Done That, Wrote the Blog: The Choices and Challenges of Supporting Adolescents and Young Adults With Cancer

2010 ◽  
Vol 28 (32) ◽  
pp. 4842-4849 ◽  
Author(s):  
Claire L. Treadgold ◽  
Aura Kuperberg
Keyword(s):  
Young Adults ◽  
Young Adult ◽  
Support Groups ◽  
Current Literature ◽  
Adolescent And Young Adult ◽  
Online Support ◽  
Age Group ◽  
Group Support ◽  
Patients With Cancer ◽  
Opportune Time

The purpose of this article is to review the current literature on the provision of support groups for adolescent and young adult (AYA) patients with cancer with a focus on the challenges that are faced by these initiatives. The value of group support to patients with cancer and particularly to this age group has been well documented. However, with the advent and increase in popularity of online support options, it is an opportune time to examine the options available to the AYA group and highlight areas that would benefit from further investigation. This article will review the literature on the need to provide support groups to this age group, the available options, and the challenges they face.

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