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BackgroundQuestionnaires are widely used in survey research, especially in cohort studies. However, participation in questionnaire studies has been declining over the past decades. Because high participation rates are needed to limit the risk of selection bias and produce valid results, it is important to investigate invitation strategies which may improve participation. ObjectivesThe purpose of this study is to investigate the effect of Web-based versus paper-based questionnaires on participation rates in a questionnaire survey on late effects among childhood cancer survivors (CCSs). MethodsA total of 750 CCSs were randomized across 3 study arms. The initial invitation in study arms 1 and 2 consisted of a Web-based questionnaire only, whereas in study arm 3 this invitation was complemented with a paper-based version of the questionnaire. The first postal reminder, sent to the nonresponding CCSs in all 3 study arms, consisted of either a reminder letter only (study arms 1 and 3) or a reminder letter complemented with a paper-based questionnaire (study arm 2). The second postal reminder was restricted to CCSs in study arms 1 and 2, with only those in study arm 1 also receiving a paper-based questionnaire. CCSs in study arm 3 received a second reminder by telephone instead of by mail. In contrast to CCSs in study arm 3, CCSs in study arms 1 and 2 received a third reminder, this time by telephone. ConclusionInvitation strategies offering a Web-based questionnaire without a paper-based alternative at first invitation can be used without compromising participation rates of CCS. Offering the choice between paper- and Web-based questionnaires seems to result in the highest accrual participation rate. Future research should look into the quality of the data delivered by both questionnaires filled in by respondents themselves. Trial RegistrationInternational Standard Randomized Controlled Trial Number (ISRCTN): 84711754; http://www.controlled-trials.com/ISRCTN84711754 (Archived by WebCite at http://www.webcitation.org/6c9ZB8paX)

Background: Pediatric oncology patients who require admission to the pediatric intensive care unit (PICU) have worse outcomes compared to their non-cancer peers. Although multi-organ dysfunction (MOD) plays a pivotal role in PICU mortality and morbidity, risk factors for MOD have not yet been identified. We aimed to identify risk factors at PICU admission for new or progressive MOD (NPMOD) during the first week of PICU stay. Methods: This retrospective cohort study included all pediatric oncology patients aged 0 to 18 years admitted to the PICU between June 2018 and June 2021. We used the recently published PODIUM criteria for defining multiorgan dysfunction and estimated the association between covariates at PICU baseline and the outcome NPMOD using a multivariable logistic regression model, with PICU admission as unit of study. To study the predictive performance, the model was internally validated by using bootstrap. Results: A total of 761 PICU admissions of 571 patients were included. NPMOD was present in 154 PICU admissions (20%). Patients with NPMOD had a high mortality compared to patients without NPMOD, 14% and 1.0% respectively. Hemato-oncological diagnosis, number of failing organs and unplanned admission were independent risk factors for NPMOD. The prognostic model had an overall good discrimination and calibration. Conclusion: The risk factors at PICU admission for NPMOD may help to identify patients who may benefit from closer monitoring and early interventions. When applying the PODIUM criteria, we found some opportunities for fine-tuning these criteria for pediatric oncology patients, that need to be validated in future studies. [ABSTRACT FROM AUTHOR]

Background: Childhood cancer survivors are at risk for developing long‐term adverse health outcomes. To identify the risk of and risk factors for specific health outcomes, well‐established cohorts are needed with detailed information on childhood cancer diagnosis, treatment, and health outcomes. We describe the design, methodology, characteristics, and data availability of the Dutch Childhood Cancer Survivor Study LATER cohort (1963–2001) part 1; questionnaire and linkage studies. Methods: The LATER cohort includes 5‐year childhood cancer survivors, diagnosed in the period 1963–2001, and before the age of 18 in any of the seven former pediatric oncology centers in the Netherlands. Information on health outcomes from survivors and invited siblings of survivors was collected by questionnaires and linkages to medical registries. Results: In total, 6165 survivors were included in the LATER cohort. Extensive data on diagnosis and treatment have been collected. Information on a variety of health outcomes has been ascertained by the LATER questionnaire study and linkages with several registries for subsequent tumors, health care use, and hospitalizations. Conclusion: Research with data of the LATER cohort will provide new insights into risks of and risk factors for long‐term health outcomes. This can enhance risk stratification for childhood cancer survivors and inform surveillance guidelines and development of interventions to prevent (the impact of) long‐term adverse health outcomes. The data collected will be a solid baseline foundation for future follow‐up studies. [ABSTRACT FROM AUTHOR]

This multi-center cohort-study examined late mortality among 6,165 Dutch five-year childhood cancer survivors diagnosed 1963–2001. Clinical details and cause of death were based on medical records. Mortality was 12-fold that of the general population, with 51.3 additional deaths per 10,000 person-years (21.9 yrs median follow-up). Cumulative mortality 15 yrs post-diagnosis was 6.9%, predominantly from late recurrences; thereafter the absolute contribution of other health outcomes increased. Cumulative all-cause and recurrence-related mortality were highest for Central Nervous System and bone tumor survivors. All-cause, but not subsequent tumor and circulatory disease-related cumulative mortality, was highest for patients diagnosed 1963–1979 vs. later (p-trend <0.001). [ABSTRACT FROM AUTHOR]

Guidelines on cardiac rehabilitation (CR) state that a patient-tailored, comprehensive CR programme should be constructed for each patient based on a structured needs assessment procedure. We performed a usability evaluation with seven end-users of the MediScore CARDSS 2.0 system which implements such a procedure based on the Dutch guidelines. The analysis showed that users deviated strongly from the predefined data entry order; could not complete all subtasks for a complete needs assessment procedure, and needed more navigation actions than minimally required. We conclude that the design model of systems which implement guidelines requiring data entry should adapt to users' mental model concerning data entry to guarantee complete data collection. [ABSTRACT FROM AUTHOR]

The Dutch Childhood Oncology Group (DCOG) has developed evidence-based guidelines for screening childhood cancer survivors for possible late complications of treatment. These paper-based guidelines appeared to not suit clinicians' information retrieval strategies; it was thus decided to communicate the guidelines through a Computerized Decision Support (CDS) tool. To ensure high usability of this tool, an analysis of clinicians' cognitive strategies in retrieving information from the paper-based guidelines was used as requirements elicitation method. An information processing model was developed through an analysis of think aloud protocols and used as input for the design of the CDS user interface. Usability analysis of the user interface showed that the navigational structure of the CDS tool fitted well with the clinicians' mental strategies employed in deciding on survivors screening protocols. Clinicians were more efficient and more complete in deciding on patient-tailored screening procedures when supported by the CDS tool than by the paper-based guideline booklet. The think-aloud method provided detailed insight into users' clinical work patterns that supported the design of a highly usable CDS system. [ABSTRACT FROM AUTHOR]

Background: Pediatric oncology patients who require admission to the pediatric intensive care unit (PICU) have worse outcomes compared to their non-cancer peers. Although multi-organ dysfunction (MOD) plays a pivotal role in PICU mortality and morbidity, risk factors for MOD have not yet been identified. We aimed to identify risk factors at PICU admission for new or progressive MOD (NPMOD) during the first week of PICU stay., Methods: This retrospective cohort study included all pediatric oncology patients aged 0 to 18 years admitted to the PICU between June 2018 and June 2021. We used the recently published PODIUM criteria for defining multi-organ dysfunction and estimated the association between covariates at PICU baseline and the outcome NPMOD using a multivariable logistic regression model, with PICU admission as unit of study. To study the predictive performance, the model was internally validated by using bootstrap., Results: A total of 761 PICU admissions of 571 patients were included. NPMOD was present in 154 PICU admissions (20%). Patients with NPMOD had a high mortality compared to patients without NPMOD, 14% and 1.0% respectively. Hemato-oncological diagnosis, number of failing organs and unplanned admission were independent risk factors for NPMOD. The prognostic model had an overall good discrimination and calibration., Conclusion: The risk factors at PICU admission for NPMOD may help to identify patients who may benefit from closer monitoring and early interventions. When applying the PODIUM criteria, we found some opportunities for fine-tuning these criteria for pediatric oncology patients, that need to be validated in future studies., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2023 Soeteman, Fiocco, Nijman, Bollen, Marcelis, Kilsdonk, Nieuwenhuis, Kappen, Tissing and Wösten-van Asperen.)