For every guideline topic there are five key issues that need to be addressed:

  • Who needs surveillance?
  • At what age or time from exposure should surveillance be initiated?
  • At what frequency should surveillance be performed?
  • What surveillance modality should be used?
  • What effective treatment options are available if health problems are identified?

The guideline development process consists of five steps.

Step 1: Determine concordances and discordances among existing guidelines

The first step of the process it to extract the recommendations as formulated in the published long-term follow-up guidelines of the COG, DCOG, UKCCLG, and SIGN and to determine concordances and discordances. According to the Institute of Medicine, clinical practice guidelines are defined as “statements that include recommendations intended to optimize patient care that are informed by a systematic review of evidence and an assessment of the benefits and harms of alternative care options”. This effort encompassed published guidelines that were developed following systematic evaluation of the quality of the late effects literature, linking therapeutic interventions with adverse outcomes. At the initiation of the harmonization process in 2010, four societies (COG, DCOG, SIGN, UKCCLG) had published health screening recommendations for childhood cancer survivors and disseminated these recommendations beyond their institutional, national and cooperative groups.

Step 2: Formulate clinical questions

Focused clinical questions are formulated based on the discordant guideline areas to identify the underlying evidence. For the concordant guideline areas no new search for evidence is performed.

Step 3: Identify available evidence

For every clinical question the supporting evidence is identified. Electronic databases, such as PubMed/MEDLINE and the Cochrane Central Library of Controlled Trials are searched.
The evidence available in existing guidelines and provided by experts in the field is also considered.

Step 4: Summarize evidence

The identified studies are summarized in evidence tables.
When evidence is lacking for childhood and young adult cancer survivors, evidence may be extrapolated from other populations.

Step 5: Formulate recommendations

The IGHG group discusses the evidence and formulates recommendations considering the quality of the evidence, the benefits versus harms of the surveillance intervention, and the need to maintain flexibility of application across health care systems.
The quality of the evidence and the strength of the recommendations are categorized according to a 4-level color grading system adapted from existing level of evidence criteria.