BACKGROUND Sensitive measures of early lung disease are being integrated into therapeutic trials and clinical practice in cystic fibrosis (CF). The impact of early disease surveillance (EDS) using these novel and often intensive techniques on young children and their families is not well researched. METHODS The Australian Respiratory Early Surveillance Team for Cystic Fibrosis (AREST CF) has operated a combined clinical and research early disease surveillance program, based around annual chest CT scan, bronchoscopy and lung function from newborn screening diagnosis until age 6 years, for over two-decades. To explore parental experiences of EDS in their child, a qualitative study was conducted using audio-recorded, semi-structured interviews in n=46 mothers and n=21 fathers of children (aged 3-months to six years) attending CF centres in Perth and Melbourne, Australia. Themes were developed iteratively using thematic analysis and assessed for validity and confirmability. RESULTS Parents' experiences were positive overall; affording a sense of control over CF, disease knowledge, and belief that EDS was in the best interests of their child. Challenges included poor understanding about EDS measures leading to anxiety and distress, self-blame surrounding adverse findings, and emotional burden of surveillance visits. Tailored information regarding the practical and psychosocial aspects of EDS were endorsed. CONCLUSION While experiences were generally positive there is need for information and psychosocial support for parents to mitigate anxiety and develop positive coping strategies surrounding surveillance procedures and results. Managing expectations regarding risks and benefits of disease surveillance in clinical and research settings are important aspects of care.

中文翻译：

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囊性纤维化幼儿的早期疾病监测：父母经验的定性分析

背景 早期肺病的敏感测量正被整合到囊性纤维化 (CF) 的治疗试验和临床实践中。使用这些新颖且通常是强化技术的早期疾病监测 (EDS) 对幼儿及其家庭的影响尚未得到很好的研究。方法 澳大利亚囊性纤维化呼吸早期监测小组 (AREST CF) 实施了一项综合临床和研究早期疾病监测计划，该计划基于从新生儿筛查诊断到 6 岁的年度胸部 CT 扫描、支气管镜检查和肺功能，为期超过 2-几十年。为了探索他们孩子的 EDS 父母经历，使用录音进行了定性研究，在澳大利亚珀斯和墨尔本的 CF 中心对 n = 46 名母亲和 n = 21 名孩子（3 个月至 6 岁）的父亲进行了半结构化访谈。使用主题分析迭代开发主题，并评估其有效性和可确认性。结果 父母的经历总体上是积极的；提供对 CF 的控制感、疾病知识，并相信 EDS 符合他们孩子的最大利益。挑战包括对导致焦虑和痛苦的 EDS 措施的理解不足、围绕不良发现的自责以及监测访问的情绪负担。批准了有关 EDS 的实际和社会心理方面的定制信息。结论 虽然经验普遍是积极的，但需要为父母提供信息和社会心理支持，以减轻焦虑，并围绕监测程序和结果制定积极的应对策略。在临床和研究环境中管理对疾病监测风险和收益的预期是护理的重要方面。