Identifying and Addressing the Needs of Adolescents and Young Adults With Cancer: Summary of an Institute of Medicine Workshop

Abstract

Cancer is the leading disease‐related cause of death in adolescents and young adults (AYAs). This population faces many short‐ and long‐term health and psychosocial consequences of cancer diagnosis and treatment, but many programs for cancer treatment, survivorship care, and psychosocial support do not focus on the specific needs of AYA cancer patients. Recognizing this health care disparity, the National Cancer Policy Forum of the Institute of Medicine convened a public workshop to examine the needs of AYA patients with cancer. Workshop participants identified many gaps and challenges in the care of AYA cancer patients and discussed potential strategies to address these needs. Suggestions included ways to improve access to care for AYAs, to deliver cancer care that better meets the medical and psychosocial needs of AYAs, to develop educational programs for providers who care for AYA cancer survivors, and to enhance the evidence base for AYAs with cancer by facilitating participation in research.

Adolescent and Young Adult Oncology, Version 2.2018, NCCN Clinical Practice Guidelines in Oncology

“…15 The distinct biology of disease and age-related issues in AYA patients should be considered in the treatment decision-making process. 16 The AYA patient is generally defined as an individual 15 to 39 years of age at the time of initial cancer diagnosis. 6,17 Nearly 70,000 people in this age group are diagnosed with cancer each year in the United States, which is more than 7 times more people than are diagnosed at younger than 15 years of age.…”

“…[34][35][36] As mentioned earlier, the low rate of participation in clinical trials is one of the main reasons for the lack of improvement in outcomes in AYA patients with cancer. 1,3,4,22 A review of 30 studies of adolescents with cancer (ages [15][16][17][18][19] showed that 5% to 34% of these patients enrolled in clinical trials. 22 In 20 to 25 year olds, clinical trial enrollment further decreases to approximately 2%.…”

“…16,52,[101][102][103][104][105] The ASCO Clinical Practice Guidelines recommend that providers discuss the options for fertility preservation with all new patients with cancer at diagnosis. 106 Nevertheless, fertility preservation is currently one of the most underprescribed and least implemented services in AYA patients with cancer.…”

Symptom self-management strategies reported by adolescents and young adults with cancer receiving chemotherapy

“…Along with rising cancer incidence in this age group, this disparity has led to an increased interest in their unique needs. Independence, school, partner, family, and career choices are just a few of the milestones that occur during this developmental stage [2,3]. Cancer can disrupt these developmental tasks-necessitating dependence where independence was emerging, putting school and career goals on hold, dictating treatments that challenge intimacy and fertility-resulting in short and long-term effects.…”

Why Young Patients with Cancer Require Different Coping Tools?

“…Furthermore, cancer was the leading cause of death due to illness in the adolescent and young adult (18-39 year old) population [2]. Despite these figures, no one thinks he is close to suffering from cancer.…”