Recommendations for the surveillance of education and employment outcomes in survivors of childhood, adolescent, and young adult cancer: A report from the International Late Effects of Childhood Cancer Guideline Harmonization Group

Abstract

Educational achievement and employment outcomes are critical indicators of quality of life in survivors of childhood, adolescent, and young adult (CAYA) cancer. This review is aimed at providing an evidence‐based clinical practice guideline (CPG) with internationally harmonized recommendations for the surveillance of education and employment outcomes in survivors of CAYA cancer diagnosed before the age of 30 years. The CPG was developed by a multidisciplinary panel under the umbrella of the International Late Effects of Childhood Cancer Guideline Harmonization Group. After evaluating concordances and discordances of 4 existing CPGs, the authors performed a systematic literature search through February 2021. They screened articles for eligibility, assessed quality, and extracted and summarized the data from included articles. The authors formulated recommendations based on the evidence and clinical judgment. There were 3930 articles identified, and 83 of them, originating from 17 countries, were included. On a group level, survivors were more likely to have lower educational achievement and more likely to be unemployed than comparisons. Key risk factors for poor outcomes included receiving a primary diagnosis of a central nervous system tumor and experiencing late effects. The authors recommend that health care providers be aware of the risk of educational and employment problems, implement regular surveillance, and refer survivors to specialists if problems are identified. In conclusion, this review presents a harmonized CPG that aims to facilitate evidence‐based care, positively influence education and employment outcomes, and ultimately minimize the burden of disease and treatment‐related late adverse effects for survivors of CAYA cancers. Lay Summary A multidisciplinary panel has developed guidelines for the surveillance of education and employment outcomes among survivors of childhood, adolescent, and young adult cancer. On the basis of evidence showing that survivors are at risk for lower educational achievement and unemployment, it is recommended that all survivors receive regular screening for educational and employment outcomes.

Generalizing approaches to surveillance for complex social outcomes in broad‐range patient populations—The cost in terms of lost information and subgroup utility

“…The review presented in Devine et al's IGHG report 18 not only confirms what is known from earlier reviews but also further specifies and, in certain detail, elaborates on the risks that childhood cancer survivors and CAYA‐CSs run. As in a prior review of childhood cancer–related studies by the Dutch Childhood Oncology Group 21 for its 2010 follow‐up guidelines, the findings from studies now reviewed by Devine et al are divergent with respect to the extent to which addressed EEAC outcomes are affected or not affected among survivors.…”

“…Devine et al 18 identify 4 areas where there are gaps in current knowledge: studies in countries outside Europe and North America, conflicting evidence for the association of the age at primary cancer and the risk of repeating a grade, the need for studies on health‐related unemployment, and the need for intervention studies. With reservations regarding the long‐term significance of the single factor of repeating a grade, the identified areas appear to be possible targets of forthcoming studies.…”

“…The CPG recommendations for steps in EEAC surveillance proposed in Devine et al's report 18 are based on their extensive review and efforts to grade evidence from studies involving CAYA‐CSs. Although the surveillance recommendations meant to apply at the entire CAYA‐CS group level remain rather broad and general as could be expected, the report comprehensively presents currently available research findings regarding the occurrence of EEAC outcomes and related risk factors.…”

“…For instance, recommendations for breast cancer and ototoxicity surveillance in survivors who have received treatment in young adulthood up to the age of 30 years have been included, 6,7 and recommendations concerning other health outcomes complete the list of IGHG guidelines. [8][9][10][11][12][13][14][15][16][17] In this issue of Cancer on behalf of the IGHG, Devine et al 18 present an extensive review of studies (2009-2021) investigating childhood, adolescent, and young adult cancer survivors (CAYA-CSs) with respect to long-term education and employment adverse consequences (EEACs) along with suggestions for harmonized general guidelines for surveillance regarding these outcomes. Their report is aimed at presenting clinical practice guidelines (CPGs) for the surveillance of CAYA-CSs with recommendations and measures to prevent or compensate for adverse EEACs related to the initial cancer and the cancer treatment.…”

“…In this issue of Cancer on behalf of the IGHG, Devine et al 18 present an extensive review of studies (2009‐2021) investigating childhood, adolescent, and young adult cancer survivors (CAYA‐CSs) with respect to long‐term education and employment adverse consequences (EEACs) along with suggestions for harmonized general guidelines for surveillance regarding these outcomes. Their report is aimed at presenting clinical practice guidelines (CPGs) for the surveillance of CAYA‐CSs with recommendations and measures to prevent or compensate for adverse EEACs related to the initial cancer and the cancer treatment.…”