Feijen, E.A.M.; Teepen, J.C.; Dulmen-den Broeder, E. van; Heuvel-Eibrink, M. van den; Heiden-van der Loo, M. van der; Pal, H.J.H. van der; ... ; Kremer, L.C.M. 2023
Background: Childhood cancer survivors face late health problems; despite advances in research, details on risk remain unclear. We describe the methodological aspects of the Dutch Childhood Cancer... Show moreBackground: Childhood cancer survivors face late health problems; despite advances in research, details on risk remain unclear. We describe the methodological aspects of the Dutch Childhood Cancer Survivor Study (DCCSS) cross-sectional clinical study (LATER 2 study). Procedure: From the multi-center DCCSS LATER cohort of 6165 five-year survivors diagnosed during 1963-2001, we invited 4735 eligible survivors in 2016, as well as siblings and parents of survivors. Gaps in evidence identified during development of surveillance guidelines were translated into clinical research questions for 16 outcome-specific subprojects. The regular care visit to the LATER outpatient clinic forms the backbone of outcome assessment complemented with research-defined measurements (physical examination, clinical tests, questionnaires). Furthermore, blood/saliva samples were taken for deoxyribonucleic acid (DNA) extraction. Results: In total, 2519 (53.2%) survivors participated in the LATER 2 study. When comparing participants with nonparticipants, we observed that males, CNS survivors, and those treated with surgery only were less likely to participate. Of the participating survivors, 49.3% were female. Median time since childhood cancer diagnosis was 26.9 years (range 14.8-54.7 years) and median attained age was 34.4 years (range 15.4-66.6 years). Conclusions: The high-quality data generated in the LATER 2 study will provide valuable insights into risks of and risk factors for clinical and physical and psychosocial health outcomes and factors for early recognition of those health outcomes in long-term childhood cancer survivors. This will contribute to fill in important gaps in knowledge and improve the quality of life and care for childhood cancer survivors. Show less
Introduction:Patient-reported outcome measures (PROMs) are used increasingly, but for young patients with hip complaints, traditional scoring systems have a ceiling effect that limits their... Show moreIntroduction:Patient-reported outcome measures (PROMs) are used increasingly, but for young patients with hip complaints, traditional scoring systems have a ceiling effect that limits their usability. We developed and validated the Super Simple Hip (SUSHI) score, a PROM specifically targeted at younger patients with hip complaints. Although the SUSHI measured hip problems adequately, the responsiveness of its activity rating component was considered inadequate. Consequently, we replaced the activity rating component by the University of California, Los Angeles (UCLA) activity scale. The aim of this study was to validate the resulting new 10-item SUSHI-UCLA score.Methods:A prospective multicentre observational cohort study was performed. Patients between 18 and 59 years, who visited the Orthopaedic Department with hip complaints, completed the SUSHI-UCLA and hip osteoarthritis outcome score (HOOS) twice before their 1st appointment, and once 16 months after.Results:142 patients were included (mean age 49 years; SD 8.8). The SUSHI-UCLA score correlated well with the HOOS, both before and after treatment (Spearman's rho = 0.739 and 0.847, respectively, both p < 0.001). The responsiveness of both the SUSHI-UCLA score and the UCLA activity scale was high (standardised response mean = 2.51 and 1.35 respectively). The reproducibility was good (interclass correlation coefficient for agreement = 0.962). The minimal important change was 21.2. No significant floor or ceiling effect was observed.Conclusion:The SUSHI-UCLA score is an adequate PROM to measure hip complaints in younger patients and includes a validated activity rating. Show less
