Working beyond the patient and cancer for adolescents and young adults

This special issue of the European Journal of Cancer Care explores the experiences of cancer patients who are diagnosed or receive treatment while they are an adolescent or young adult (AYA). The need to consider AYAs as a distinct patient population with unique needs was first highlighted in the early 1990s (Zeltzer, 1993). Since then, the field has evolved from understanding the needs of patients (Haase & Phillips, 2004), to exploring the complexities of survivorship (Zebrack, Bleyer, Albritton, Medearis, & Tang, 2006) and developing AYA-specific interventions and services which address their needs (Richter et al., 2015). It is now understood that the concerns of AYAs differ from both older and younger cancer patients not only biologically, but also psychosocially, as their cancer experience is shaped by the developmental landscape of adolescence and young adulthood.

Kim, Patterson, and White (2018) explore how cancer can impact the AYA developmental trajectory, in particular identity formation and the establishment of independence. Through interviews with AYA cancer survivors, Lie, Larsen, and Hauken (2018) further stressed the challenges of coping with the pervasive change and uncertainty that characterises the experience of cancer as an AYA. A cancer diagnosis and treatment during adolescence and young adulthood often place those affected in a “state of suspension”: Uncertain prognoses and long-term outcomes complicate processes of identity development and future planning (Kim et al., 2018; Lie et al., 2018). Cancer can complicate efforts to establish independence, cause disruptions to education and employment, and challenge the development of financial independence and self-sufficiency, which coupled with disease and treatment burdens, often necessitate a renewed dependence on parents and relatives at a time when AYAs would typically be moving away from their childhood family (Kim et al., 2018). Subsequent shifts in family and peer relationships have flow-on implications not just for the AYAs diagnosed with cancer, but also for the people around them (Lie et al., 2018). For example, Hsiao et al. (2018) report that mothers of childhood cancer survivors have trouble planning for the future in light of uncertainties about what will be possible for their child.

Reviews by Galán, de la Vega, and Miró (2018) and Lea et al. (2018) summarise what is known about the developmental and psychosocial challenges for AYAs as they enter longer-term survivorship. In addition to the uncertainties for AYAs facing this transition: They recognise the need for honest, age-appropriate and individualised information especially regarding treatment details and what to expect from survivorship. For AYAs whose treatment has finished, follow-up care has predominantly emphasised the monitoring of cancer recurrence and second primaries while paying insufficient attention to psychosocial needs, late effects of cancer and treatment, and emergence and management of other chronic illnesses.

Hsiao et al. (2018) and Franklin, Patterson, Allison, Rosso-Buckton, and Walczak (2018) papers explore the impact of childhood and AYA cancers on mothers and siblings respectively. As young people are typically still embedded in their family, their diagnosis and treatment can disrupt family functioning and significantly impact family members. The mothers recruited by Hsiao and colleagues noted the ongoing impact of childhood cancer extending into survivorship and reported ongoing concerns about their children's health and future, including potential recurrences and late effects. Mothers’ efforts to maintain their children's health were contrasted to the limited availability of information and support for carers when planning longer-term follow-up care for childhood cancers. The needs of siblings of AYA cancer patients appear to be similarly overlooked, with the healthcare professionals’ interviews reporting that the needs and issues of this population often go unnoticed (Franklin et al., 2018). The lack of progress in this area is perhaps surprising given the cornerstone work carried out by Faulkner and colleagues (Faulkner, O'Keeffe, & Peace, 1995) in the 1990s which pointed to the very same issue.

Young people diagnosed with cancer do not exist in isolation. They are typically embedded within their childhood families or are in the process of building their own families and often have a network of friends and acquaintances from school, work or other social circles who may also provide them with support. However, the impact of an AYA's diagnosis cascades to their family, friends and the wider community; these people may find a cancer diagnosis in a young person distressing as it challenges the natural order of things. So, while young people with cancer emphasise the critical importance of support from family, friends and peers (Kim, White, & Patterson, 2016; Zebrack, 2011), it is also important to consider the impact of the diagnosis on them (Galán et al., 2018). The work by Hsiao et al. (2018) on the impact on mothers of cancer patients and the paper on siblings by Franklin and colleagues (2018) demonstrate the importance of this type of research.

The issues raised in several of these papers point to a growing understanding of the importance of supporting not only the patient, but also their families and friends, and continuing that support after treatment has ended. Acting on these issues will also require critical consideration of the role of primary care and community sectors in the provision of these supports rather than a focus on the often overburdened acute sector.

Great progress has been made in understanding and addressing the impact of cancer in young people, with recent research highlighting how this may extend beyond active treatment into survivorship, and beyond those diagnosed with cancer to their families and friends. While papers in this special issue highlight the resilience of AYA patients and their support networks in coping with cancer, they also clearly demonstrate the need for improved supportive care to supplement existing coping strategies (Lie et al., 2018), ease difficult transitions (Galán et al., 2018; Lea et al., 2018) and address the needs of parents and siblings (Franklin et al., 2018; Hsiao et al., 2018; Kim et al., 2018). Given current service limitations (Franklin et al., 2018; Hsiao et al., 2018), this may require an adjustment of how the healthcare system is perceived. Through better integration of hospital-based healthcare services with community-based services, it will be possible to provide more holistic care to young people encompassing family and friends, and life after treatment. Enabling and empowering impacted AYAs to contribute to any reform will be crucial (Patterson et al., 2018) and will ensure that services are developmentally appropriate and responsive to the needs of those they serve.