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International Guideline Harmonization Group for late effects of childhood cancer
Three countries wrote three different sets of follow-up rules for the same survivors, and the rules disagreed about who to screen, how and how often. Since 2010 this group has been settling those disagreements one organ at a time, in public, with the evidence graded and the disagreement named.
Also called: IGHGInternational Late Effects of Childhood Cancer Guideline Harmonization Group
Overview
The problem the group was formed to solve is stated in each of its papers: surveillance recommendations "vary considerably" between the existing long-term follow-up guidelines, which "impedes the implementation of screening". A survivor of the same treatment could be told to have a yearly echocardiogram in one country, one every five years in another, and nothing in a third. The International Late Effects of Childhood Cancer Guideline Harmonization Group was initiated in 2010 with the aim of establishing "a common vision and integrated strategy for the surveillance of late effects in childhood and young adult cancer survivors".
The method is consistent across topics: an international multidisciplinary panel, a systematic review of the evidence for the late effect and for the surveillance test, grading of each recommendation by the strength of the underlying evidence and the potential benefit from early detection, and transparent reporting of where the panel had to rely on consensus. Panels have run from 25 to 33 experts across as many as ten countries, often jointly with PanCare.
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The published topics include cardiomyopathy surveillance (2015), breast cancer surveillance after chest radiation (2013), premature ovarian insufficiency (2016), male gonadotoxicity (2017), thyroid cancer (2018), ototoxicity (2019) and fertility preservation for female and male patients (2021), alongside recommendations on bone mineral density, central nervous system neoplasms, coronary artery disease, dexrazoxane cardioprotection, education and employment, fatigue, hepatic toxicity, hypothalamic-pituitary dysfunction, mental health, metabolic syndrome, nephrotoxicity, obstetric care and pulmonary dysfunction, and anthracycline dose equivalence ratios. The group's site also lists topics still in development, among them colorectal cancer, dyslipidaemia, growth hormone treatment, neurocognitive problems, osteonecrosis, overweight and obesity, splenic dysfunction, thyroid dysfunction and underweight.
Two honest features are worth a reader's attention. The guidelines frequently conclude that the evidence is thin: the male gonadotoxicity paper states that the recommendations "reveal the paucity of high-quality evidence, highlighting the need for further targeted research". And where two screening strategies are equally unproven, the group says so rather than choosing: for thyroid cancer, "Of the two available surveillance strategies, thyroid ultrasound and neck palpation, neither was shown to be superior", so the panel produced a decision aid for a shared decision rather than a recommendation to screen.
Holds
Harmonised, evidence-graded surveillance recommendations for the late effects of childhood, adolescent and young adult cancer, each developed by an international multidisciplinary panel.
Licence
Published in the peer-reviewed literature; summaries free on the group's site
Maintainer
International Guideline Harmonization Group, with PanCare and the Children's Oncology Group
Notes
top- The group harmonises surveillance, not treatment. What to do about a late effect once found is left to the relevant specialty.
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