Psychosocial service use and unmet need among recently diagnosed adolescent and young adult cancer patients

Abstract

BACKGROUND: Adolescents and young adults (AYAs) with cancer demonstrate biomedical risks and psychosocial issues distinct from those of children or older adults. In this study, the authors examined and compared the extent to which AYAs treated in pediatric or adult oncology settings reported use of, and unmet need for, psychosocial support services. METHODS: Within 4 months of initial cancer diagnosis, 215 AYAs ages 14 to 39 years (99 from pediatric care settings and 116 from adult care settings; 75% response rate) were assessed for reporting use of information resources, emotional support services, and practical support services. Statistical analyses derived odds ratios and 95% confidence intervals for service use and unmet needs after controlling for race, employment/ school status, sex, relationship status, severity of cancer, treatment, and treatment-related side effects. RESULTS: AYAs ages 20 to 29 years were significantly less likely than teens and older patients ages 30 to 39 years to report using professional mental health services and were significantly more likely to report an unmet need with regard to cancer information, infertility information, and diet/ nutrition information. Compared with teens who were treated in pediatric facilities, AYAs who were treated in adult facilities were more likely to report an unmet need for age-appropriate Internet sites, professional mental health services, camp/retreats programs, transportation assistance, and complementary and alternative health services. CONCLUSIONS: Substantial proportions of AYAs are not getting their psychosocial care needs met. Bolstering psychosocial support staff and patient referral to community-based social service agencies and reputable Internet resources may enhance care and improve quality of life for AYAs.

Assessing the psychosocial needs and program preferences of adolescents and young adults with cancer

“…The needs of AYA with cancer are unique and diverse, resulting from interactions of the AYA development period with the demands of cancer and its treatment [1,2,5,6,19,27]. The extent to which these needs are not met through current psychosocial services programming in both pediatric and adult cancer centers can further limit AYA HRQL [4,6,7,[20][21][22].…”

“…In addition, in research and clinical care, AYA with cancer are not distinguished from younger children or adults, and it is uncommon for AYA to participate in clinical research trials [3]. Many AYA treated in adult facilities report a lack of ageappropriate psychosocial services [4,5], which can negatively impact their physical and psychosocial health-related quality of life (HRQL) [6,7]. An important implication of these unique factors is that services provided for AYA with cancer should better address the specific challenges and goals of the AYA age group.…”

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

“…8 AYA patients also face unique developmental and psychosocial issues that make adjustment to their disease, health-maintenance, and financial hardships more challenging. 6,[9][10][11][12] The biology, epidemiology, and clinical outcomes affecting AYA patients are usually different than those of younger and older patients with cancer. 13,14 In addition, the genetic, physiologic, and pharmacologic changes associated with AYA patients may impact their ability to tolerate cancer therapy and their response to treatment.…”

“…Diet/nutrition information has been reported as an unmet need among AYA patients. 10 Nutritional requirements and potential deficits should be evaluated based on the patient's age. • For those who desire to receive complementary and alternative medicine, refer them to reputable providers of these services.…”

Patient Navigation Preferences for Adolescent and Young Adult Cancer Services by Distance to Treatment Location

“…1 AYA cancer patients and survivors experience barriers to accessing information and support services, because they often receive care in oncology settings that may not provide targeted AYA services. [2][3][4] AYAs are often uninsured, have limited healthcare access, and experience delays in cancer diagnosis. 1,5,6 These challenges may be exacerbated for AYAs living far from their cancer treatment center.…”