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.

Keywords: AYAs; adolescents and young adults; age-specific care needs; cancer; population-based data; survivorship.

FIGURE 1

Dutch AYA “Young & Cancer” Care Network's AYA anamnesis for clinical practice. Note: the AYA anamnesis tool for clinical practice is used to facilitate the discussion between the HCP and the AYA during the consultation. Each topic represents a need with questions and possible interventions.

FIGURE 2

(A) The need for age‐specific care per (sub) topic. * Friends subtopics include peers with cancer and social life. ** Illness and treatment subtopics include aftercare and rehabilitation, and short‐ and long‐term effects. *** Overarching care and life subtopics include information and guidance, and life after cancer. Note: As some terms did not fit into one topic only, they were included into multiple topics. This was done for physiotherapy (sport and movement, and aftercare and rehabilitation) and the governmental institute for employee‐specific insurances (mortgages and insurances, work and reintegration, and benefits and compensations). Some topics are very closely related (e.g., expressing a need for psychological support for one's children and partner. Although these needs were categorized within the family and children topic only, they also link with the topic emotion). To avoid over‐categorization, these answers were categorized at one topic only. Table 2 shows several quotes as examples. An open text response can be categorized for the topic itself, in addition to the subtopic. (B) The need for age‐specific care per subtopic of friends; illness and treatment; and overarching care and life.