Learning from long‐term adolescent and young adult (AYA) cancer survivors regarding their age‐specific care needs to improve current AYA care programs

Abstract

Background Despite growing (inter)national awareness and appreciation, age‐specific care is still not always self‐evident and accepted as standard of care for adolescent and young adult (AYA) cancer patients. It is unknown whether long‐term AYA cancer survivors have missed age‐specific care, and if so, which survivors missed it and regarding which topics. Methods The Netherlands Cancer Registry (NCR) identified all long‐term AYA cancer survivors (aged 18–39 years at initial cancer diagnosis, 5–20 years past diagnosis) in the Netherlands, who were invited to participate in a population‐based, observational, cross‐sectional questionnaire study (SURVAYA study), including questions on care needs. Results In total, 3.989 AYAs participated (35.3% response rate). One‐third of them had a need for age‐specific care (33.5%), 41.2% had no need and 25.3% did not know whether they had a need. Those who had a need for age‐specific care were significantly more often female, higher educated, diagnosed at a younger age, and treated with chemotherapy, radiotherapy or hormone therapy. Most frequent topics were disease and treatment (29.7%), emotions (24.1%), friends (22.6%), family and children (15.6%), fertility and pregnancy (14.8%), work and reintegration (10.5%), care not tailored (13.8%), and overarching care and life (27.7%). Palliative care (0.0%), spirituality (0.2%), death (0.7%), complementary care (0.7%), and late effects (1.3%) were mentioned least. Conclusions A substantial proportion of long‐term AYA cancer survivors showed a need for age‐specific care, varying by sociodemographic and clinical factors, on a wide variety of topics, which could be targeted to improve current AYA care services.

Sexual quality of life of adolescents and young adult breast cancer survivors

“…Sexuality and intimacy are important aspects of AYA health care and sexual health should be discussed early in the treatment process. 35 , 78 The results of this study demonstrated that AYA breast cancer survivors experience significantly more sexual QoL challenges compared to (female) AYA survivors of other cancer types. While discussing that sexual health is important for all AYA cancer survivors, those facing challenges related to sexuality, particularly breast cancer patients, might benefit from specialized interventions such as consultations with a sexologist.…”

Peer2Me – evaluation of a peer supported program for adolescent and young adult (AYA) cancer patients: study protocol of a randomised trial using a comprehensive cohort design

“…Young adults with cancer are exposed to disease- and treatment-related stressors as well as various psychosocial stressors [ 27 , 70 ]. Existing psycho-oncological research shows that AYA have unmet needs for information and support [ 71 , 72 ]. Social support is crucial for this patient group, and in addition to family and friends, social interactions with peers play an important role [ 73 , 74 ].…”

Adapting an Adolescent and Young Adult Program Housed in a Quaternary Cancer Centre to a Regional Cancer Centre: Creating Equitable Access to Developmentally Tailored Support

“…With continued professional development and recruitment of additional interdisciplinary team members; the current “domains” of AYA supportive care include fertility preservation, sexual health, spirituality, finances, school, work, symptom management, diet, exercise, sleep, relationships, parenting, coping, peer connection, and practical support. The flow of patients through the AYA program, including which actions are carried out by specific team members is shown in ( Figure 1 ) [ 38 ].…”