Cancer commonly affects growth and development, either directly in physical changes or through parenting and peer experiences. Physicians and other health care professionals taking care of childhood cancer survivors should have an understanding of major developmental tasks of childhood in order to normalize the cancer experience in an age-appropriate way [2, 3]. Providing appropriate support for those tasks differs somewhat according to the type of transition. As summarized in Table 1.1, during transitions associated with diagnosis and treatment, the focus for all age groups is to support patients and families through crises characterized by sudden and dramatic change, unfamiliar situations, uncertain outcomes and frightening possibilities.

In contrast, during transitions associated with survivorship, especially during late long-term follow-up, the focus switches to assisting patients and families with understanding and coming to terms with the persisting health problems and/or future risks resulting from cancer treatment. In both transitions, explanations should become more detailed, commensurate with the patient’s and the family’s cognitive capacity and degree of involvement in medical decision-making. In pediatric oncology, clinicians are faced with the interesting challenge of caring for older long-term survivors who were treated as young children, yet never developed insight into and understanding of their cancer and its treatment. They return year after year with little knowledge as to why they are in the cancer clinic. As these survivors mature into adolescence, it is essential they receive sufficient information about their cancer, its treatment, and the resulting health implications, in order to prepare them properly for health care transition.

This period encompasses the end of treatment until approximately 24 months after completion of treatment, during which most survivors are at the highest risk for relapse. The primary focus during this transition is to assist the patient in returning to baseline function. Ironically, toward the latter phases of treatment, many older patients develop a certain comfort level in receiving chemotherapy, especially if it is tolerated reasonably well and no relapse has occurred. The transition to end of therapy may elicit anxiety and fears related to relapse, for which many families feel unprepared [4].

One way to aid families in navigating this transition is to have a formal conference with them at the end of treatment [5]. This conference should involve at least the patient, parents and/ or significant others, the primary oncologist, and ideally the primary nurse and social worker. During this end of treatment conference, the team should briefly summarize the cancer diagnosis, the treatment received, immediate plan for follow-up, surveillance and other health recommendations. Many families are relieved to discover that they are not now “on their own,” but that cancer treatment is followed by a formal phase of surveillance with systematic monitoring initially for relapse, and then later for long-term health and well-being. Straightforward conversation about the risk and typical patterns, the timing and symptoms of relapse, when to call the oncology clinic and the specific plan for surveillance will help reduce anxiety. Parents and patients should be briefly re-educated about the relevant, major long-term effects of treatment and need for continued follow-up. This presents an excellent opportunity to introduce the concept of lifelong survivorship care and the long-term follow-up program, if such a program exists in the institution. Parents should be encouraged to re-establish their child’s care with the child’s primary care provider, whom they should now contact for any health issues except those clearly related to the cancer. Specifying when to resume childhood immunizations and normal activity should be discussed. A copy of the treatment summary and follow-up plans should be provided to the older patient, parents and the primary care provider as a roadmap or guideline for future healthcare. Names and updated contact information for organizations providing further information and support to survivors may be provided.

The transition period begins approximately 2 years post-cessation of cancer treatment and continues onwards. This transition is, for most patients, open-ended in the sense that life-long surveillance is recommended for most childhood cancer survivors. The separation between initial and subsequent periods of follow-up care is not uniformly distinct, as the risk for late relapse differs by cancer diagnosis. Indeed, for institutions where referral to cancer survivorship programs occurs relatively early, long-term follow-up services can overlap and should continue parallel with disease-directed surveillance for some period of time. The primary focus of this transition is to establish the practices for risk-based monitoring and to provide related health education to the survivor and family. Whereas the major risk during the initial period of follow-up is relapse, the major risk during this later period is disengagement from medical care and failure to remain in structured follow-up.