Abstract：
OBJECTIVE: Limited evidence on home care and need for long-term individualized follow-up highlight the importance of developing an Internet-based follow-up platform to support caregivers of children with Bronchiolitis Obliterans (BO). This Study aims to explore and test the potential benefits of this platform by comparing family management, medication compliance and clinical systems.
METHODS: A two-arm, single-blind randomized controlled trial was conducted on 168 children with BO and their families from January 2022 to October 2022. Families were randomly divided into Internet-based follow-up group and conventional follow-up group with a ratio of 1:1. Scores of family management measures (FaMM), 8-item of Morisky Medication Adherence (8-MMAS) and BO clinical symptoms of both groups were collected at three points of time: the day of discharge (T1), 3 months after discharge (T2), and 6 months after discharge (T3). The changes of each group due to intervention were compared by repeated-measures ANOVA.
RESULTS: 90 families completed the trial, including 48 in the Internet-based follow-up group and 42 in the conventional follow-up group. The results showed a significant difference in the group-by-time interaction on the scores of Child\'s Daily Life, Condition Management Ability and Parental Mutuality (p < 0.05). No group-by-time effect was found on the scores of View of Condition Impact and Family Life Difficulty. Scores of BO clinical symptoms and MMAS-8 showed intra-group, inter-group, and group-by-time effects.
CONCLUSIONS: The Internet-based follow-up platform can empower caregivers in enhancing effective family management, improving medication compliance in children with BO, and relieving patients\' clinical symptoms.
BACKGROUND: Chinese Clinical Trials Registry of ChiCTR2200065121 (04/28/2022).
METHODS: A two-arm, single-blind randomized controlled trial was conducted on 168 children with BO and their families from January 2022 to October 2022. Families were randomly divided into Internet-based follow-up group and conventional follow-up group with a ratio of 1:1. Scores of family management measures (FaMM), 8-item of Morisky Medication Adherence (8-MMAS) and BO clinical symptoms of both groups were collected at three points of time: the day of discharge (T1), 3 months after discharge (T2), and 6 months after discharge (T3). The changes of each group due to intervention were compared by repeated-measures ANOVA.
RESULTS: 90 families completed the trial, including 48 in the Internet-based follow-up group and 42 in the conventional follow-up group. The results showed a significant difference in the group-by-time interaction on the scores of Child\'s Daily Life, Condition Management Ability and Parental Mutuality (p < 0.05). No group-by-time effect was found on the scores of View of Condition Impact and Family Life Difficulty. Scores of BO clinical symptoms and MMAS-8 showed intra-group, inter-group, and group-by-time effects.
CONCLUSIONS: The Internet-based follow-up platform can empower caregivers in enhancing effective family management, improving medication compliance in children with BO, and relieving patients\' clinical symptoms.
BACKGROUND: Chinese Clinical Trials Registry of ChiCTR2200065121 (04/28/2022).
摘要：
目的：关于家庭护理的有限证据和长期个性化随访的需求强调了开发基于互联网的随访平台以支持闭塞性细支气管炎（BO）患儿的看护人的重要性。本研究旨在通过比较家庭管理来探索和测试该平台的潜在收益，药物依从性和临床系统。
方法：双臂，本研究于2022年1月至2022年10月对168名BO儿童及其家庭进行了单盲随机对照试验.家庭随机分为网络随访组和常规随访组,比例为1:1。家庭管理措施(FaMM)的分数，在三个时间点收集两组的8项Morisky药物依从性（8-MMAS）和BO临床症状：出院当天（T1），出院后3个月（T2），出院后6个月（T3）。通过重复测量方差分析比较各组因干预引起的变化。
结果：90个家庭完成了试验，其中互联网随访组48人，常规随访组42人。结果显示，不同时间的群体互动对儿童日常生活得分有显著差异，病情管理能力与父母相互关系(p<0.05)。在“状况影响”和“家庭生活困难”的评分上没有发现按时间分组的影响。BO临床症状和MMAS-8评分显示组内，组间,和按时间分组的效果。
结论：基于互联网的随访平台可以授权护理人员加强有效的家庭管理，改善BO儿童的用药依从性，缓解患者的临床症状。
背景：ChiCTR2200065121（2022年4月28日）中国临床试验注册中心。
方法：双臂，本研究于2022年1月至2022年10月对168名BO儿童及其家庭进行了单盲随机对照试验.家庭随机分为网络随访组和常规随访组,比例为1:1。家庭管理措施(FaMM)的分数，在三个时间点收集两组的8项Morisky药物依从性（8-MMAS）和BO临床症状：出院当天（T1），出院后3个月（T2），出院后6个月（T3）。通过重复测量方差分析比较各组因干预引起的变化。
结果：90个家庭完成了试验，其中互联网随访组48人，常规随访组42人。结果显示，不同时间的群体互动对儿童日常生活得分有显著差异，病情管理能力与父母相互关系(p<0.05)。在“状况影响”和“家庭生活困难”的评分上没有发现按时间分组的影响。BO临床症状和MMAS-8评分显示组内，组间,和按时间分组的效果。
结论：基于互联网的随访平台可以授权护理人员加强有效的家庭管理，改善BO儿童的用药依从性，缓解患者的临床症状。
背景：ChiCTR2200065121（2022年4月28日）中国临床试验注册中心。
