Abstract：
BACKGROUND: Caregivers of a child with a Developmental and Epileptic Encephalopathy (DEE) often report challenges accessing relevant and understandable information regarding their child\'s condition. We developed GenE Compass, an information linker service where caregivers are invited to submit questions and receive high-quality, personalised reports. We conducted a pilot evaluation to determine the feasibility and acceptability of GenE Compass.
METHODS: We invited eligible caregivers to complete a baseline questionnaire (Q1) prior to receiving three months access to submit an unlimited number of questions to GenE Compass. We then invited caregivers to complete a follow-up questionnaire (Q2) and optional interview. Caregivers also had the opportunity to share report-specific feedback at the time of receiving each report.
RESULTS: Seventy-two caregivers completed Q1, of which 41 submitted at least one question (range = 1-7). We received a total of 76 questions. The median turnaround time was 12 working days for our information linker (range = 1-28). Thirty-seven caregivers completed Q2, of whom 32 submitted at least one question (87 %). Overall, caregivers were highly satisfied with GenE Compass and their reports, and indicated that they would use it in the future if they had another question. Caregivers\' qualitative data from Q1 and interviews highlighted the ongoing need for an information linker service like GenE Compass due to a lack of understandable information and limited resources, and the benefit in reducing burden of constant information searching.
CONCLUSIONS: Our study shows that GenE Compass is feasible with the appropriate allocation of resources and highly acceptable to caregivers who have a child with a DEE.
METHODS: We invited eligible caregivers to complete a baseline questionnaire (Q1) prior to receiving three months access to submit an unlimited number of questions to GenE Compass. We then invited caregivers to complete a follow-up questionnaire (Q2) and optional interview. Caregivers also had the opportunity to share report-specific feedback at the time of receiving each report.
RESULTS: Seventy-two caregivers completed Q1, of which 41 submitted at least one question (range = 1-7). We received a total of 76 questions. The median turnaround time was 12 working days for our information linker (range = 1-28). Thirty-seven caregivers completed Q2, of whom 32 submitted at least one question (87 %). Overall, caregivers were highly satisfied with GenE Compass and their reports, and indicated that they would use it in the future if they had another question. Caregivers\' qualitative data from Q1 and interviews highlighted the ongoing need for an information linker service like GenE Compass due to a lack of understandable information and limited resources, and the benefit in reducing burden of constant information searching.
CONCLUSIONS: Our study shows that GenE Compass is feasible with the appropriate allocation of resources and highly acceptable to caregivers who have a child with a DEE.
摘要：
背景：患有发育性和癫痫性脑病（DEE）的儿童的看护人经常报告在获取有关其儿童状况的相关和可理解的信息时遇到的挑战。我们开发了GenECompass,一种信息链接服务，邀请护理人员提交问题并获得高质量的信息，个性化报告。我们进行了试点评估，以确定GenECompass的可行性和可接受性。
方法：我们邀请符合条件的护理人员在接受三个月访问之前完成基线问卷（Q1），向GenECompass提交无限数量的问题。然后，我们邀请护理人员完成随访问卷（Q2）和可选的访谈。护理人员在收到每份报告时也有机会分享针对具体报告的反馈。
结果：72名护理人员完成了Q1，其中41人提交了至少一个问题（范围=1-7）。我们总共收到了76个问题。我们的信息链接的平均周转时间为12个工作日(范围=1-28)。37名护理人员完成了第二季度，其中32人提交了至少一个问题(87%)。总的来说,护理人员对GenECompass及其报告非常满意，并表示如果他们有另一个问题，他们将来会使用它。来自第一季度的看护者定性数据和访谈强调了由于缺乏可理解的信息和有限的资源，对像GenECompass这样的信息链接服务的持续需求，以及减轻持续信息搜索负担的好处。
结论：我们的研究表明，GenECompass在适当分配资源的情况下是可行的，并且对于有DEE孩子的照顾者来说是高度可接受的。
方法：我们邀请符合条件的护理人员在接受三个月访问之前完成基线问卷（Q1），向GenECompass提交无限数量的问题。然后，我们邀请护理人员完成随访问卷（Q2）和可选的访谈。护理人员在收到每份报告时也有机会分享针对具体报告的反馈。
结果：72名护理人员完成了Q1，其中41人提交了至少一个问题（范围=1-7）。我们总共收到了76个问题。我们的信息链接的平均周转时间为12个工作日(范围=1-28)。37名护理人员完成了第二季度，其中32人提交了至少一个问题(87%)。总的来说,护理人员对GenECompass及其报告非常满意，并表示如果他们有另一个问题，他们将来会使用它。来自第一季度的看护者定性数据和访谈强调了由于缺乏可理解的信息和有限的资源，对像GenECompass这样的信息链接服务的持续需求，以及减轻持续信息搜索负担的好处。
结论：我们的研究表明，GenECompass在适当分配资源的情况下是可行的，并且对于有DEE孩子的照顾者来说是高度可接受的。
