Life situation and psychosocial care of adolescent and young adult (AYA) cancer patients – study protocol of a 12-month prospective longitudinal study

Over the last decades, the incidence of cancer in “Adolescents and Young Adults” (AYAs) has increased both in Europe and North America [1–3]. The National Cancer Institute defined the age range of AYA as being 15 to 39 years at the time of diagnosis [4]. Each year about 15.000 young people in Germany are diagnosed with cancer [5]. AYA patients differ in terms of biological, epidemiological, and clinical characteristics from other patient groups both younger and older than them [6]. With a 10-year overall survival rate of around 80%, 20- to 39-year olds’ chances of recovery are well above average [7].

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 [8–10]. The few studies that do exist show that AYA cancer patients experience many specific sequelae after cancer diagnosis and treatment such as: loss of fertility [11, 12], hair loss, other changes in body image, and fatique [13, 14], as well as further difficulties related to social relationships, employment, educational attainment, and financial stability [15, 16]. Regarding mental health, 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). In a recent systematic review by Quinn et al. [19] about QoL in AYA cancer patients, nearly 35 studies (29 of which were mainly done in the USA and Canada) concluded, that AYA cancer survivors are more likely to have poorer QoL compared with the age-matched general population and older cancer survivors. In this review only 11 out of 35 studies included all cancer types, and only three of those 11 had satisfactory sample sizes (greater than 100) [11, 14, 20]. Consequently, Warner et al. [16] have highlighted the need for AYA-studies with more heterogeneous cancer samples that would allow for comparing subgroups.

Previous studies have found that AYA cancer patients have different psychosocial and medical needs during acute treatment than they do in subsequent phases of rehabilitation or after-care [17, 21]. Consequently, it is essential that well designed, prospective, controlled studies of QoL among AYAs be conducted to examine outcomes across the survivorship continuum in specific cancer types [8]. To our knowledge, only three longitudinal studies have been done so far to examine AYA cancer patients’ psychosocial situation [22–24].

Furthermore, in their recent report about the current state of science associated with cancer among AYAs, Smith et al. [8] as well as Nightingale et al. [25] state that the instruments that have been used, to date, neglect some important and unique concerns of AYA cancer survivors. Qualitative research has found the themes health behavior, reproductive and sexual health, and social support by family and friends to be issues that have a profound impact on AYA cancer patients’ QoL [26].

Our study aims to examine a large sample of AYA cancer patients diagnosed with a cross-section of malignant cancer types by focusing on their psychological distress, QoL, psychosocial living situation, and use of psychosocial support services. Within a longitudinal design, we will also consider AYA-specific concerns like health behavior, family planning and sexual and reproductive health.