Department of Health Outcomes and Behavior, Moffitt Cancer Center, 12902 Magnolia Drive, Tampa, FL, 33612, USA.
University of Utah, Salt Lake City, USA.
Support Care Cancer. 2018 Dec;26(12):4199-4206. doi: 10.1007/s00520-018-4293-z. Epub 2018 Jun 12.
The goals of this study were to assess the feasibility of a web-based application-electronic Social Network Assessment Program (eSNAP)-to automate the capture and visualization of family caregiver social network data of neuro-oncology patients.
Caregivers were recruited from a neuro-oncology clinic at an NCI-designated comprehensive cancer center. Participants completed baseline questionnaires on a laptop in clinic assessing demographic characteristics. After baseline, participants were randomly assigned to either create a social network visualization using eSNAP (intervention) or to usual care (control) condition. Those who used eSNAP provided likeability/usability data. All participants were asked to complete follow-up questionnaires at 3 and 6 weeks after baseline to determine feasibility of longitudinal study.
We recruited 40 caregivers of patients with primary malignant brain tumor to participate in this study. Participants rated eSNAP usability and likeability highly, indicating that eSNAP would help them consider their available social support. At 3 weeks, 90% of participants completed questionnaires and 82.5% completed questionnaires at 6 weeks.
There is a need to encourage family caregivers of patients with primary malignant brain tumor to engage their existing social network resources to help alleviate caregiver burden. Our findings suggest that our web-based application to address this issue is feasible to implement with high usability and likeability. This pilot study identified minor changes to the intervention to improve effectiveness and has implications for future research in this understudied population.
clinicaltrials.gov, protocol number NCT03026699.
本研究的目的是评估基于网络的应用程序-电子社交网络评估程序（eSNAP）在自动获取和可视化神经肿瘤患者家庭照顾者社交网络数据方面的可行性。
从国家癌症研究所指定的综合癌症中心的神经肿瘤学诊所招募了照顾者。参与者在诊所使用笔记本电脑完成基线问卷，评估人口统计学特征。基线后，参与者被随机分配到使用 eSNAP 创建社交网络可视化（干预）或常规护理（对照）条件。使用 eSNAP 的参与者提供了可用性/易用性数据。所有参与者都被要求在基线后 3 周和 6 周完成随访问卷，以确定纵向研究的可行性。
我们招募了 40 名原发性恶性脑肿瘤患者的照顾者参加这项研究。参与者对 eSNAP 的可用性和易用性评价很高，表明 eSNAP 将帮助他们考虑自己现有的社会支持。在 3 周时，90%的参与者完成了问卷，82.5%在 6 周时完成了问卷。
需要鼓励原发性恶性脑肿瘤患者的家庭照顾者利用现有的社交网络资源来帮助减轻照顾者的负担。我们的研究结果表明，我们的网络应用程序在解决这个问题方面是可行的，具有很高的可用性和易用性。这项初步研究确定了干预措施的一些小改动，以提高效果，并对这一研究不足的人群的未来研究具有意义。
clinicaltrials.gov，方案编号 NCT03026699。
