The transition from an initial period of disease-directed to long-term follow-up commonly begins approximately 2 years post-cessation of treatment. For most patients, this phase is open-ended in the sense that lifelong surveillance is recommended for most childhood cancer survivors [3]. The demarcation between the initial and subsequent periods of follow-up care is not uniformly distinct, as the risk for late relapse differs by cancer diagnosis. Cancer survivorship and disease-directed follow-up need not be “either/or” services. At institutions where survivorship referral occurs relatively early, long-term follow-up services may overlap and should continue in parallel with disease-directed surveillance until released by the treating oncologist. The primary focus of this survivorship transition is to establish risk-based monitoring and to provide health-related education to the survivor and family. Whereas relapse is the principal risk during initial posttreatment follow-up, a major subsequent challenge becomes the survivor’s potential disengagement from and failure to remain in structured follow-up.

As developed by the Society for Adolescent Medicine, the now-classic definition of health-care transition is the planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health-care systems [19]. Its overarching purpose is to provide continuous, well-coordinated care that is both medically and developmentally appropriate. As mentioned previously, continuing needs for late effects surveillance, health promotion, and personal advocacy/empowerment provide the medical rationale for health-care transition of childhood cancer survivors. While health-care transition is a concept now being applied broadly across most chronic diseases or conditions originating in childhood [20–22], cancer survivorship is different in that patients are considered cured but remain at risk for developing late effects. Most are asymptomatic, leading many survivors to question why continued medical care is necessary. In order to ensure a successful transition, adolescents and young adults should be encouraged to take responsibility for their wellness. Communication should be directed toward the adolescent/young adult rather than the parent in order to address important issues such as sexuality, reproductive health, substance abuse, and other risk-taking behaviors [19]. Most adolescent cancer survivors undergo the same developmentally appropriate shifts as their peers, including educational advancement, change in residence, reorientation of primary relationships, need for employment and health insurance, and switching to an adult-focused health-care provider [23]. It is important for health-care transition to address these needs in a way that is relevant for childhood cancer survivors. In particular, adolescent survivors need to understand the interrelationship of education, employment, and health insurance—the “Golden Triangle” of childhood cancer survivorship (Fig. 23.1). In the United States, most health insurance for adults is provided through an employer-based benefits package. Thus, securing health insurance requires having a job with benefits, which is facilitated, in turn, by completing formal education and career planning. According to the US Department of Labor, among Americans aged 25 years and older in November 2012, unemployment rates by educational level, categorized as some high school, high school graduate, some college/associate’s degree, and bachelor’s degree or beyond, were 12.2 %, 8.1 %, 6.5 %, and 3.8 %, respectively [24]. Given that young adult cancer survivors already exhibit higher levels of nonemployment than their siblings [25] coupled with their need for health insurance, it becomes especially important to encourage postsecondary education leading to employable careers for adolescent and young adult survivors who have the potential to succeed.

Health-care transition generally occurs in the age range of 18–21 years. This is also the age when most pediatric hospitals are less able to serve the needs of adult patients, due to child-oriented facilities and lack of convenient access to adult-focused specialists. Recent studies have found there is considerable variation in timing of transition among pediatric oncology centers. In a recent survey of 220 COG institutions, 35 % of respondents reported having no formal transitional care mechanism, 31 % reported transition is carried out when the patient is deemed ready, and the remainder carries out transition at varying points between 18 and 30 years of age [15]. In a survey of 12 academic centers in New England, only 4 of the 11 with established survivorship clinics reported having an age-specific policy for transition, with their median age of transition being 32 years (range, 21–40) [26]. In a survey of Canadian pediatric oncology centers, 8 of 15 reported having formal programs for adult survivors, with 2 more in development; although age at transition was not reported, only 4 of these 10 centers estimated that 50 % or more of their adult survivors were being followed [27]. Some have drawn support for delaying transition until the mid- to late-twenties from recent evidence that neurobiological maturation in brain regions responsible for risk assessment, motivation, and choice is not complete until that time [28].

Relatively little is known about what factors contribute to successful health-care transition, particularly for childhood cancer survivors. Through focus group interviews of adolescents with special health-care needs, their parents, and providers, Reiss and Gibson identified the following factors as important: (1) having a future-focused orientation throughout care, (2) viewing transition positively as a normal milestone of late adolescence, (3) starting the transition process early, (4) fostering personal and medical independence by promoting early involvement of the child in medical decision making, and (5) maintaining continuous, uninterrupted health-care insurance if possible [29]. Inasmuch as the majority of childhood cancer patients become long-term survivors, it is appropriate to make first mention of health-care transition even as early as the initial family conference at diagnosis and to revisit the topic at the end of therapy and upon referral to survivorship clinic. In their model of transition for adolescent childhood cancer survivors, Schwartz and colleagues have described a “window of modifiability” between end of treatment and engagement in adult care during which transition readiness increases through the application of interventions targeted at variables including knowledge, skills/efficacy, beliefs/expectations, goals, relationships, and psychosocial functioning [30].