Health-related problems in adult cancer survivors: development and validation of the Cancer Survivor Core Set

PURPOSE: Improved survival rates from cancer have increased the need to understand the health-related problems of cancer treatment. We aimed to develop and validate the “Cancer Survivor Core Set” representing the most relevant health-related problems in adult cancer survivors using the International Classification of Functioning, Disability, and Health (ICF). METHODS: First, a Delphi study was conducted to select ICF categories representing the most relevant health-related problems. There were three Dutch expert panels, one each for lung, colorectal, and breast cancer. Each panel comprised lay experts and professionals. The experts reached within- and between-panel consensus in two rounds (≥70 % agreement). Second, a validation study was performed. Generic cancer survivorship questionnaires assessing health-related problems or quality of life among cancer survivors were selected. Items of selected questionnaires were linked to the best-fitting ICF category and to the selected ICF categories from the Delphi study, respectively. RESULTS: In total, 101 experts were included, of which 76 participated in both rounds, reaching consensus on 18 ICF categories. The Distress Thermometer and Problem List, the Impact of Cancer (v2), and the Quality of Life in Adult Cancer Survivors questionnaires were selected for the validation study, which led to the inclusion of one additional ICF category. CONCLUSIONS: The developed Cancer Survivor Core Set consisted of 19 ICF categories representing the most relevant health-related problems in adult cancer survivors: five from the “body functions and structures” component, eight from the “activities and participation” component, and six from the “environmental factors” component. HIGHLIGHTS: • Many adult cancer survivors have persistent health-related problems. • The Cancer Survivor Core Set was developed using the Delphi method. • The patients’ perspectives were prioritized in this Delphi study • Content validity was confirmed by validated cancer survivorship questionnaires. • The Cancer Survivor Core Set may help optimize care for cancer survivors. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1007/s00520-016-3439-0) contains supplementary material, which is available to authorized users.