Abstract
BackgroundIn recent years, there has been an increased research focus on adolescent and young adult (AYA) cancer patients. Few longitudinal studies have taken into consideration the specifics of their life situation and the status of psychosocial care services for this population. Our ongoing study aims to determine the psychosocial life and supportive care situation of AYA cancer patients, to describe risk groups, and to develop recommendations for their psycho-oncological care and support.MethodsThe AYA-Leipzig study (AYA-LE) is a German prospective, longitudinal, study examining AYAs´ life situation (e.g. psychological distress, quality of life) and psychosocial care (e.g. evaluation and preferences, support needs) using two measurement points, namely, upon acute treatment completion (baseline) and 12 months later. N = 577 AYA cancer patients aged between 18 and 39 years at diagnosis, and representing all major tumor entities fill out a standardized questionnaire (online or by post), mainly based on validated instruments. AYA-specific concerns (e.g. family planning, sexual and reproductive health, social support, health behavior) will explicitly be considered. Participants are recruited in 16 German acute care hospitals, four rehabilitation clinics, and from two German state tumor registries.DiscussionIn summary, our longitudinal study will create a large database encompassing all malignant tumor entities and including detailed information about the distress and quality of life, specific problems, and specific support needs of AYA cancer patients at two different points in time post-diagnosis. The information we gather about existing psychosocial care and patient preferences and desires concerning psycho-oncological care will be used to develop recommendations for psycho-oncological care providers.
Highlights
In recent years, there has been an increased research focus on adolescent and young adult (AYA) cancer patients
While there are a number of studies on the psychosocial life of cancer patients who are either children or further into adulthood, so far, little empirical data has been collected on patients between the ages of 15 and 39 years old [8,9,10]
The majority of the existing studies have shown that adolescent cancer patients have increased anxiety, depression, and distress compared to their healthy peers and the general public [10, 17, 18]
Summary
There has been an increased research focus on adolescent and young adult (AYA) cancer patients. The majority of the existing studies have shown that adolescent cancer patients have increased anxiety, depression, and distress compared to their healthy peers and the general public [10, 17, 18]. Those concerns often result in impaired quality of life (QoL). Warner et al [16] have highlighted the need for AYA-studies with more heterogeneous cancer samples that would allow for comparing subgroups
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