Beyond Teenage and Young Adult Cancer Care: Care Experiences of Patients Aged 25–39 Years Old in the UK National Health Service

Abstract

Aims: Adolescents and young adults aged 15e39 years with cancer face unique medical, practical and psychosocial issues. In the UK, principal treatment centres and programmes have been designed to care for teenage and young adult patients aged 13e24 years in an age-appropriate manner. However, for young adults (YAs) aged 25e39 years with cancer, little access to age-specific support is available. The aim of this study was to examine this possible gap by qualitatively exploring YA care experiences, involving patients as research partners in the analysis to ensure robust results. Materials and methods: We conducted a phenomenological qualitative study with YAs diagnosed with any cancer type between ages 25 and 39 years old in the last 5 years. Participants took part in interviews or focus groups and data were analysed using inductive thematic analysis. Results were shaped in an iterative process with the initial coders and four YA patients who did not participate in the study to improve the rigor of the results. Results: Sixty-five YAs with a range of tumour types participated. We identified seven themes and 13 subthemes. YAs found navigating the healthcare system difficult and commonly experienced prolonged diagnostic pathways. Participants felt under-informed about clinical details and the long-term implications of side-effects on daily life. YAs found online resources overwhelming but also a source of information and treatment support. Some patients regretted not discussing fertility before cancer treatment or felt uninformed or rushed when making fertility preservation decisions. A lack of age-tailored content or agespecific groups deterred YAs from accessing psychological support and rehabilitation services. Conclusions: YAs with cancer may miss some benefits provided to teenagers and young adults in age-tailored cancer services. Improving services for YAs in adult settings should focus on provision of age-specific information and access to existing relevant support.

Symptom Profiles of Adolescents and Young Adults in Active Cancer Treatment by Diagnostic Groups

“…For example, because young adults 25 years and older are more likely to be managing career and childcare demands relative to younger AYAs and typically receive their cancer care in adult settings, their symptom experience and access to resources to support symptom management may differ. [19][20][21] Although our study sample was not large enough to support more robust comparisons, we did observe some differences based on age group to explore in future studies. Changes in how food tastes were more frequently reported by adolescents in the total sample and in those with brain tumors, HL, and sarcoma.…”

“…Although AYAs are recognized as a distinct, understudied group of individuals with cancer, the consequences of the developmental heterogeneity within this group 18 on their cancer symptom experience are underexplored. For example, because young adults 25 years and older are more likely to be managing career and childcare demands relative to younger AYAs and typically receive their cancer care in adult settings, their symptom experience and access to resources to support symptom management may differ 19–21 …”

Early-Onset Cancers in Adults: A Review of Epidemiology, Supportive Care Needs and Future Research Priorities

“…However, for adults aged over 24 years, cancer care is provided in adult centres where management is largely similar across all age groups, not taking into account differences in their specific care needs. Patients aged 25 to 39 years in the UK have reported a lack of guidance in navigating health and supportive care services and the need for more information regarding their diagnosis, side effects of treatment and lifestyle modification [ 39 ].…”

Frühes Auftreten von Krebs bei Erwachsenen: Ein Überblick über Epidemiologie, Unterstützungsbedarf und zukünftige Forschungsprioritäten

“…Für Erwachsene über 24 Jahre wird die Krebsbehandlung jedoch in Erwachsenenzentren durchgeführt, in denen die Behandlung für alle Altersgruppen weitgehend gleich ist, wobei die Unterschiede in den spezifischen Behandlungsbedürfnissen nicht berücksichtigt werden. Patienten aus Großbritannien im Alter von 25 bis 39 Jahren haben berichtet, dass sie nicht genug Anleitung bei der Auseinandersetzung mit Gesundheits- und Pflegediensten bekommen und mehr Informationen über ihre Diagnose, die Nebenwirkungen der Behandlung und die Änderung ihres Lebensstils benötigen [39].…”