Development of Risk-Based Guidelines for Pediatric Cancer Survivors: The Children's Oncology Group Long-Term Follow-Up Guidelines From the Children's Oncology Group Late Effects Committee and Nursing Discipline

Abstract

The Children's Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers are risk-based, exposure-related clinical practice guidelines intended to promote earlier detection of and intervention for complications that may potentially arise as a result of treatment for pediatric malignancies. Developed through the collaborative efforts of the Children's Oncology Group Late Effects Committee, Nursing Discipline, and Patient Advocacy Committee, these guidelines represent a statement of consensus from a multidisciplinary panel of experts in the late effects of pediatric cancer treatment. The guidelines are both evidence-based (utilizing established associations between therapeutic exposures and late effects to identify high-risk categories) and grounded in the collective clinical experience of experts (matching the magnitude of risk with the intensity of screening recommendations). They are intended for use beginning 2 or more years following the completion of cancer therapy; however, they are not intended to provide guidance for follow-up of the survivor's primary disease. A complementary set of patient education materials ("Health Links") was developed to enhance follow-up care and broaden the application of the guidelines. The information provided in these guidelines is important for health care providers in the fields of pediatrics, oncology, internal medicine, family practice, and gynecology, as well as subspecialists in many fields. Implementation of these guidelines is intended to increase awareness of potential late effects and to standardize and enhance follow-up care provided to survivors of pediatric cancer throughout the lifespan. The Guidelines, and related Health Links, can be downloaded in their entirety at www.survivorshipguidelines.org.

Long-term results of the Japanese Childhood Cancer and Leukemia Study Group studies 811, 841, 874 and 911 on childhood acute lymphoblastic leukemia

“…27 Therefore, establishment of a long-term, follow-up care system based on collaboration between clinical and laboratory investigators is our most urgent issue. 31,32 …”

Survivors of childhood cancer and their guardians

“…The need to promote and encourage healthy behaviors and lifestyles among survivors of childhood cancer was recently identified by a delphi panel of healthy policy experts, 43 and also is documented in risk-based guidelines for survivors of pediatric cancer established by the Children's Oncology Group. 44 The time has come to aggressively address this need with interventions that are acceptable and bear optimal potential for success.…”

The Management of Patients with Limited-Stage Classical Hodgkin Lymphoma

“…The optimal follow-up protocols for patients with early stage Hodgkin lymphoma have been achieved by consensus rather than being based directly on evidence from randomized trials. 32 Given the tremendous difficulty in conducting randomized trials, clinicians may benefit from regularly referring to well-conducted consensus studies that include updates and referencing websites such as the Children's Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers 33 (http://www.survivorshipguidelines.org/).…”