The experience of patients with early-stage testicular cancer during the transition from active treatment to follow-up surveillance

Issues experienced and support provided to adolescents and young adults at the end of active treatment for cancer: A rapid review of the literature

“…The review identified significant ongoing physical issues that permeated a young person's life after cancer treatment. Adolescents and young adults (AYA) reported that the ongoing side effects of their cancer treatment were worse and lasted longer than they anticipated (May et al, ; Shen et al, ). They also reported feeling concerned about the unpredictability of their physical issues (Decker, Haase, & Bell, ) and how these may affect their future (Thompson et al, ).…”

“…They wanted honest, thorough and jargon‐free information to be provided regarding ongoing physical and health issues (Moody et al, ). Adolescent and young adults wanted more information about fertility and issues surrounding sexual function (Moody et al, ; Shen et al, ). It was identified that fertility was one of the most challenging issues to deal with post‐treatment (Moody et al, ) and AYA needed more timely support and information around fertility (Thompson et al, ).…”

“…Some AYA struggled to get appointments with their medical teams when they needed to see them (Hauken et al, ; Moody et al, ; Thompson et al, ). They felt that healthcare providers often did not have enough time to answer their questions (May et al, ; Moody et al, ; Shen et al, ) and that oncologists lacked the time to discuss emotional/relationship issues in consultations (Shen et al, ). Moreover, AYA expressed that healthcare providers lacked knowledge around some of the issues that they faced at the end of treatment, for example professionals were reported to have “no knowledge of late effects” (Hauken et al, , p. E23).…”

“…It has previously been recognised that transition at the end of active treatment into survivorship for AYA is complex and requires support through a multitude of tailored services (CanTeen, ). Findings of this review have shown that AYA experience difficulty in accessing the survivorship support they need, wanting more time for consultations with doctors, and more targeted, age‐appropriate and accessible support and information compared to older adults (Brédart et al, ; Shen et al, ). Adolescents and young adults wanted honest communication in these early stages post‐treatment about what the long‐term implications of their cancer treatment could be (Decker et al, ; May et al, ).…”

“…The majority of the included papers studied a range of cancer diagnoses (n = 12), with some papers looking at specific diagnoses (n = 4) (Brédart, Kop, Fiszer, Sigal-Zafrani, & Dolbeault, 2015;Roper, Cooley, McDermott, & Fawcett, 2013;Shen et al, 2016;Smorti, 2012), for example young men with testicular cancer (Shen et al, 2016; Table 2). Most of the included studies focussed on AYA specifically (n = 14); however, papers were also included that reported the experiences of young people as a portion of a wider cohort of adult participants (n = 2) (Brédart et al, 2015;Shen et al, 2016). The studies were from a range of countries and incorporated several different methods, predominantly semi-structured interviews and self-reported/online surveys ( Table 2).…”