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Parents' Insights into Pediatric Oncology Phase I Clinical Trials: Experiences from Their Child's Participation.家长对儿科肿瘤 I 期临床试验的看法:来自孩子参与的经验。
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利用智能手机支持的微时间数据收集来提高癌症照护研究的可接受性、可行性和有效性的初步研究。

An initial investigation of using smartphone-enabled micro-temporal data collection to increase acceptability, feasibility, and validity of research on cancer caregiving.

机构信息

Department of Cancer Prevention and Control, Roswell Park Comprehensive Cancer Center, Buffalo, New York, USA.

Department of Community Health and Health Behavior, University at Buffalo, Buffalo, New York, USA.

出版信息

Pediatr Blood Cancer. 2022 Oct;69(10):e29886. doi: 10.1002/pbc.29886. Epub 2022 Jul 23.

DOI:10.1002/pbc.29886
PMID:35869890
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10273258/
Abstract

PURPOSE

Smartphone-enabled micro-temporal data collection has potential to increase reliability, validity, and feasibility of participant-reported data and is a promising strategy for pediatric oncology supportive care and quality-of-life research. Given the demands of pediatric cancer caregiving, we sought to understand the feasibility and acceptability of smartphone data collection that included short surveys administered daily for 14 days via text message link.

METHODS

We recruited pediatric cancer caregivers, whose children (ages 0-18 years) were on active treatment, to complete a 14-day daily survey study via smartphone. We implemented our study procedures and examined feasibility through study enrollment rates, reasons for refusal, retention rates, number of reminders and number of completed surveys. We examined acceptability using caregiver ratings of survey length, burden, and ease of completion on a smartphone.

RESULTS

We recruited (N = 75) caregivers to the study and had an 84% enrollment rate. Reasons for declining participation included passive refusal (n = 13) and too busy (n = 1). The participant retention rate was 100% and compliance with daily survey completion was 99%. Most surveys were completed following two prompts and took participants 5 minutes or less to complete. Caregivers rated the surveys as easy to complete, low burden, and just right in length.

CONCLUSION

A daily self-report, using a brief (≤5 minutes) survey administered on a smartphone via text message prompt, is a feasible and acceptable method. Future research should extend these findings to understand the generalizability across pediatric cancer caregiving contexts.

摘要

目的

智能手机支持的微时间数据收集有可能提高参与者报告数据的可靠性、有效性和可行性,是儿科肿瘤支持性护理和生活质量研究的有前途的策略。鉴于儿科癌症护理的需求,我们试图了解通过短信链接每天进行 14 天的简短调查来进行智能手机数据收集的可行性和可接受性。

方法

我们招募了正在接受积极治疗的儿童(0-18 岁)的儿科癌症护理人员,以通过智能手机完成为期 14 天的日常调查研究。我们实施了我们的研究程序,并通过研究登记率、拒绝原因、保留率、提醒次数和完成调查次数来检查可行性。我们使用护理人员对调查长度、负担和在智能手机上完成的容易程度的评分来检查可接受性。

结果

我们招募了 75 名护理人员参与研究,登记率为 84%。拒绝参与的原因包括被动拒绝(n=13)和太忙(n=1)。参与者保留率为 100%,每日调查完成率为 99%。大多数调查在两次提示后完成,参与者完成调查需要 5 分钟或更短的时间。护理人员认为调查易于完成、负担低且长度适中。

结论

使用简短(≤5 分钟)的智能手机调查,通过短信提示进行每日自我报告是一种可行且可接受的方法。未来的研究应该扩展这些发现,以了解在儿科癌症护理环境中的普遍性。