Survivorship Transitions Following Childhood and Adolescent Cancer

Developmental stage

Key developmental features [3]

Implications for survivorship transition care

Preschool (2–5 years)

Acquisition of language and motor skills

Direct anticipatory guidance about late effects toward the parents

Formation of simple concepts of reality

Mention to parents that eventual transition to adult-focused providers will occur

Emotional connection with other people

Cognitive features of magical thinking, egocentrism, and dominance of perception

Middle childhood (6–12 years)

Expansion of child’s world outside the home

Provide simple explanation to child relating prior illness to the need for continued follow-up

Ability to get along with other children

Continue to educate parents on late effects, health, and wellness

Development of concrete operational thinking

Revisit eventual planned transition to adult-focused providers

Acquisition of adult concepts and communication (writing, reading, calculating)

Advise parents against overprotectiveness and encourage normal discipline

Encourage parents to allow children to have increasing responsibilities at home and an increasing role in personal and medical decisions

Early adolescence (10–13 years)

Development of formal logical operations

Provide straightforward but more detailed explanations to survivor about follow-up care

Awareness of changing body and interest in opposite sex

Encourage increased participation in medical decision making and personal health choices

Reduced interest in family-centric activities

Initiate discussions with survivor about eventual transition to adult providers

Increasing peer identification

Middle adolescence (14–16 years)

Importance of physical attractiveness, popularity, and self-esteem

Direct the conversation toward the adolescent with active involvement in decision making

New understanding of abstract concepts and consequences

Reserve “alone time” with teen for a portion of each clinic visit

Reorientation of primary relationships from family to peer groups

Discuss prevention of high-risk behaviors (smoking, alcohol, drug use, unprotected sex)

Start of dating

Discuss targets for transition readiness and provide rationale for transition to adult-focused providers

Late adolescence and young adulthood (17–20 years and beyond)

Development of personal independence, core values, ethical principles, and philosophy of life

Encourage a primary role for older adolescent during clinic visits

Attainment of emotional independence

Provide information related to reproductive health and sexuality

Development of intimate relationships

Continue education about importance and rationale for lifelong follow-up

Emerging importance of career decisions as related to self-concept and emerging societal role

Encourage pursuit of higher education and provide information on survivor-focused scholarships and resources (as appropriate)

Preparation for occupation

Emphasize importance of preparing for employment with insurance benefits to cover continued follow-up care (see Fig. 23.2, the “Golden Triangle” of survivorship)

Help them understand insurance options available for cancer survivors

Assess transition readiness (see Fig. 23.1) and coordinate transition to adult setting

Adapted from Venkatramani and Freyer [46]

23.3 The Transition to Long-Term Follow-Up Care

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.

23.3.1 Late Effects and the Need for Survivorship Care

Due to the significantly increased risk for late effects, impaired health status, and premature death [46], there is expert consensus that most childhood cancer survivors should remain in structured, lifelong follow-up to facilitate risk-based monitoring and health promotion [3]. To assist in this task, the Children’s Oncology Group (COG) has developed risk-adapted clinical practice guidelines for late effects surveillance [7]. The guidelines are intended to increase awareness about potential late effects and to standardize the follow-up care of survivors provided by pediatric oncology, subspecialty, and primary care clinicians. Individual guidelines are updated regularly and, along with corresponding patient/family educational materials, may be downloaded from the COG website [8]. Research is underway to validate these guidelines and determine their clinical utility [9]. Similar guidelines have been developed by other international cooperative pediatric oncology groups [1012].

23.3.2 Role of the Cancer Survivorship Clinic

The American Academy of Pediatrics has recommended that pediatric cancer treatment centers offer a mechanism for long-term follow-up of successfully treated patients, either at the original treatment center or through referral to a dedicated childhood cancer survivorship program [13]. The main services of cancer survivorship clinic are to provide surveillance for late effects, identify and address medical and psychosocial issues, provide health education and health promotion interventions to modify risk, and conduct longitudinal research in this population (Table 23.2). Various effective models exist for delivering such care [14]. Most cancer survivorship clinics are staffed by physicians, nurse practitioners, and social workers with expertise in childhood cancer survivorship. Referral access should also be available to other specialists such as psychologists, nutritionists, genetic counselors, cardiologists, endocrinologists, fertility specialists, and orthopedic surgeons. However, given that a recent survey of COG centers found that only 59 % have dedicated cancer survivorship clinics, many institutions provide long-term follow-up care by the treating oncologist [15]. Comprehensive survivorship evaluation is resource intensive, beginning with generating a detailed cancer treatment history, performing a complete physical assessment, preparing a treatment summary and survivorship care plan, and educating the survivor and family to improve health-related knowledge, attitudes, and behaviors.

Table 23.2
Components and tasks of survivorship care

Components of ideal system of survivorship care

 1. Provide a range of direct services to survivors to identify, prevent, treat, and manage late effects

 2. Bridge the realms of primary and specialty health care with education and outreach

 3. Coordinate medical care with educational and occupational services

 4. Conduct research to better understand late effects and their prevention

Specific tasks of survivorship program

 1. Risk-based monitoring for late complications of cancer treatment

 2. Coordinating specialized care for established late complications of cancer treatment

 3. Educating and counseling survivors regarding the specific conditions to which they are susceptible and guidance of self-monitoring of late effects

 4. Applying preventive approaches known to be effective for the general population, including encouragement of abstinence from tobacco, limited exposure to alcohol, sun protection, physical activity, maintenance of a healthy weight, consumption of fruits and vegetables

 5. Providing psychosocial support services to survivors and their families

 6. Providing reproductive and sexuality counseling

 7. Providing genetic counseling for individuals with a hereditary cancer and their family members

 8. Assistance with identifying and meeting financial challenges

Referral to cancer survivorship clinic generally represents the “official” transition to long-term follow-up care. When this should be initiated is a matter of varying practice and some debate. A survey of 24 comprehensive pediatric survivorship programs found that most patients were referred to long-term follow-up clinics when they reached 5 years post-diagnosis and 2 years off therapy, whichever was later [16]. The rationale for this relatively late time point is that the risk for relapse is minimal for most pediatric cancers. One concern about such a late time point is that for cancers treated with relatively brief therapy (e.g., Wilms’ tumor and Hodgkin’s lymphoma), the duration of time between end of treatment and survivorship referral is relatively long and may result in attrition of survivors. Consequently, some programs are experimenting with earlier referral while patients are still in disease-directed follow-up in order to improve sustained engagement of survivors.

Challenges may be encountered in launching this transition. Even well-established pediatric survivorship clinics within large cancer treatment programs at prominent hospitals report capturing only a portion of eligible survivors. The reasons for this have not been studied extensively, but one survey of survivorship programs suggests that factors related to both the institution (such as inadequate resources, low institutional commitment, and lack of capacity to care for the growing population of survivors) and the survivor (including lack of awareness of health risks) may contribute [16]. Patients/families may be reluctant to relinquish their trusted treating oncologist in order to see the survivorship team. Treating oncologists may need to confront their own reluctance to “let go” of established patients. Some patients may find it difficult to come to the same clinic where they experienced the trauma of cancer treatment; thus, it is ideal, though not always feasible, to hold survivorship clinic in a separate setting. Survivors and their families may lack financial resources or face geographical barriers in traveling to the treatment center. Lack of health insurance coverage for surveillance tests may be an issue, although most states in the United States (US) provide catastrophic health insurance programs that cover follow-up services up to 21 years of age. The Patient Protection and Affordable Care Act, passed in 2010 by the US Congress, now allows young adults to continue receiving health insurance coverage through their parents’ policy until 26 years of age and prohibit exclusions based on prior health conditions [17, 18]. All of these provisions benefit young adult survivors of childhood and adolescent cancer.

23.4 The Transition from Child-Oriented to Adult-Focused Care

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 [2022], 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.


Fig. 23.1
The “Golden Triangle” of childhood cancer survivorship indicating the interrelationship of the survivor’s formal education, employment, and obtaining of health insurance. The rationales for each point of the triangle as explained to the survivor are shown

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].

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Feb 18, 2017 | Posted by in ONCOLOGY | Comments Off on Survivorship Transitions Following Childhood and Adolescent Cancer
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