Effects Steering Committee to disseminate and implement follow-up guidelines, and (2) from sitting on the American Academy of Family Physicians’ Commission on Clinical Policy and Research, the body that reviews and collaboratively develops guidelines that are adopted by members of the American Academy of Family Physicians.
Evidence-based guidelines are useful in promoting high-quality care, standardizing and facilitating the care of complex patients, and providing a rubric or a set of accepted measures for process evaluation. While they are valuable, there are some pitfalls associated with the use of guidelines. First, the large number of published guidelines may overwhelm and confuse practicing physicians. Second, some physicians reject guidelines because they may not take into consideration the complexities facing their patients. Guidelines may also be perceived to be dictating clinical decisions.
The Children’s Oncology Group (COG) long-term follow-up guidelines were developed by a late effects committee cochaired by Melissa Hudson and Wendy Landier over the course of several years. COG is a 244-institution clinical trial consortium. The pediatric community has over the past 15 years wrestled with the issues under discussion at this workshop. Much has been learned from the pediatric experience, and it would be unfortunate if this experience were not applied productively to the challenges ahead in the adult survivor arena.
The goal of the COG guideline effort was to standardize and enhance follow-up care throughout the life span of the survivor. The focus has been on screening for late effects rather than screening for relapse or recurrence, as these were already embedded in ongoing protocols. The COG guidelines start to apply at 2 years following the completion of cancer therapy. The intended users of the guidelines are clinicians who provide health care for pediatric cancer survivors regardless of their age and their care setting.
To develop the guidelines, more than a year was spent conducting in-depth literature reviews, synthesizing the literature, achieving multidisciplinary group consensus, and submitting the guidelines to external review. Some refinements have been made following their initial dissemination in September 2003.
A hybrid approach was used in guideline development. The large body of evidence linking therapeutic exposures and late effects was reviewed and scored according to quality. There are very few studies that examine how surveillance affects outcomes, in part because of the relatively small numbers of pediatric cancer survivors. Consequently, expert clinical experience and principles of screening in the general population and other high-risk groups was relied on for the aspects of care considered as part of the guideline development process.
Version 2.0 of the long-term follow-up guidelines is available online at www.survivorshipguidelines.org. The guidelines are based on therapeutic