Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers

New! Version 3.0 of Long-Term Follow-Up Guidelines


Long-Term Follow-Up Program
Resource Guide

This comprehensive guide to establishing and enhancing long-term follow-up programs for childhood cancer survivors was developed collaboratively by the Children’s Oncology Group Nursing Discipline and Late Effects Committee. Over 50 individuals from multiple disciplines contributed to this Long-Term Follow-Up Program Resource Guide, providing a broad perspective from a variety of long-term follow-up programs within the Children’s Oncology Group.

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The Children’s Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers were developed as a collaborative effort of the Nursing Discipline and the Late Effects Committee and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces. The purpose of these guidelines is to provide recommendations for screening and management of late effects that may potentially arise as a result of therapeutic exposures used during treatment for pediatric malignancies. These guidelines represent a statement of consensus from a panel of experts in the late effects of pediatric cancer treatment. The recommendations are based on a thorough review of the literature as well as the collective clinical experience of the task force members, panel of experts, and multidisciplinary review panel (including nurses, physicians, behavioral specialists and patient/parent advocates). 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 malignancies throughout the lifespan.

The Long-Term Follow-Up Guidelines were developed as a resource for clinicians who provide ongoing healthcare to survivors of pediatric malignancies. A basic knowledge of ongoing issues related to the long-term follow-up needs of this patient population is assumed. The screening recommendations in these guidelines are appropriate for asymptomatic survivors of childhood, adolescent, or young adult cancer presenting for routine exposure-based medical follow-up. More extensive evaluations are presumed, as clinically indicated, for survivors presenting with signs and symptoms suggesting illness or organ dysfunction.

The current version of these Guidelines is Version 3.0 – October 2008. As new information becomes available, the guidelines will be updated periodically to reflect those changes. We recommend that clinicians check this website periodically for the latest updates and revisions. Healthcare professionals who do not regularly care for survivors of pediatric malignancies are encouraged to consult with a pediatric oncology long-term follow-up center if any questions or concerns arise when reviewing or using these guidelines. These guidelines are not intended to replace clinical judgment or to exclude other reasonable alternative follow-up procedures. The Children’s Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider.

Although the information within the guidelines will certainly prove valuable to the survivors themselves, at this time the only version available is targeted to healthcare professionals. Therefore, survivors who choose to review these guidelines are strongly encouraged to do so with the assistance of a healthcare professional knowledgeable about long-term follow-up care for survivors of childhood, adolescent, and young adult cancers. This is important in order to put the recommendations in perspective, avoid over-testing, address potential anxieties, and provide a comprehensive evaluation of the survivor’s health status. The Children’s Oncology Group itself does not provide individualized treatment advice to patients or their families, and strongly recommends discussing this information with a qualified medical professional.

In addition to the PDF files available below, which are downloadable free of charge, the COG Long-Term Follow-Up Guidelines are also available for purchase in a printed, spiral-bound format. Click here to order.


Click below to download the Guidelines:
Long-Term Follow-Up Guidelines

Click below to download Appendix I (Materials for Clinical Application of the LTFU Guidelines):
Long-Term Follow-Up Guidelines Appendix I

Click below to download the following Materials for Clinical Application of the LTFU Guidelines:
Patient-Specific Guideline Identification Tool
Radiation Reference Guide

Click below to download Appendix II (Entire set of Health Links):
Long-Term Follow-Up Guidelines Appendix II

Click below to download individual Health Links:
Introduction to Long-Term Follow-Up
Introduction to Long-Term Follow-Up (Spanish)
Emotional Issues
Emotional Issues (Spanish)
Educational Issues
Educational Issues (Spanish)
Finding and Paying for Healthcare
Finding and Paying for Healthcare (Spanish)
Diet and Physical Activity
Diet and Physical Activity (Spanish)
Eye Health
Cataracts
Hearing Loss
Growth Hormone Deficiency
Central Adrenal Insufficiency
Hyperprolactinemia
Hypopituitarism
Dental Health
Osteoradionecrosis
Thyroid Problems
Heart Health
Heart Health (Spanish)
Pulmonary Health
Bleomycin Alert
Gastrointestinal Health
Liver Health
Hepatitis
Splenic Precautions
Kidney Health
Single Kidney Health
Bladder Health
Cystectomy
Neurogenic Bladder
Female Health Issues
Male Health Issues
Precocious Puberty
Bone Health
Osteonecrosis
Amputation
Limb Sparing Procedures
Scoliosis and Kyphosis
Peripheral Neuropathy
Raynaud's Phenomenon
Chronic Pain
Skin Health
Breast Cancer
Colorectal Cancer
Reducing the Risk of Second Cancers
Reducing the Risk of Second Cancers (Spanish)


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All content posted above are the property of the Children's Oncology Group. All rights reserved.


The Children’s Oncology Group grants permission to download the Children's Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers (including Appendices, Materials for Clinical Application, and Health Links) from www.survivorshipguidelines.org and to print copies for individual and institutional use, as long as the following conditions are met: (1) Copies are not sold or distributed for commercial advantage, and (2) the Children's Oncology Group copyright and its date appear on the printed copies.

Disclaimer and Notice of Proprietary Rights:
Introduction to Late Effects Guidelines and Health Links: The "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancers" and accompanying "Health Links" were developed by the Children's Oncology Group as a collaborative effort of the Late Effects Committee and Nursing Discipline and are maintained and updated by the Children’s Oncology Group’s Long-Term Follow-Up Guidelines Core Committee and its associated Task Forces.

For Informational Purposes Only: The information and contents of this website (including all text and graphics), the information and contents of each document or series of documents posted on this website or containing the title "Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancers " or the title "Health Link", whether available in print or electronic format (including any digital format, e-mail transmission, or download from the website), shall be known hereinafter as "Site Content". All Site Content is for informational purposes only. The Site Content is not intended to substitute for medical advice, medical care, diagnosis or treatment obtained from a physician or health care provider.

To cancer patients (if children, their parents or legal guardians): Please seek the advice of a physician or other qualified health provider with any questions you may have regarding a medical condition and do not rely on the Site Content. The Children's Oncology Group is a research organization and does not provide individualized medical care or treatment.

To physicians and other healthcare providers: The Site Content is not intended to replace your independent clinical judgment, medical advice, or to exclude other legitimate criteria for screening, health counseling, or intervention for specific complications of childhood cancer treatment. Neither is the Site Content intended to exclude other reasonable alternative follow-up procedures. The Site Content is provided as a courtesy, but not intended as a sole source of guidance in the evaluation of childhood cancer survivors. The Children's Oncology Group recognizes that specific patient care decisions are the prerogative of the patient, family, and healthcare provider.

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