Goss C H, Edwards T C, Ramsey B W, Aitken M L, Patrick D L
Department of Medicine, University of Washington, Seattle, WA, USA.
J Cyst Fibros. 2009 Jul;8(4):245-52. doi: 10.1016/j.jcf.2009.04.003. Epub 2009 May 29.
Cystic fibrosis (CF) specific patient-derived and reported symptom tools are critical steps toward evaluating the outcomes of new therapies for CF.
We conducted 25 in-depth qualitative interviews using the Day Reconstruction Method and 9 cognitive interviews at two CF programs, the University of Washington and Seattle Children's Hospital and Regional Medical Center. The interviews were audio-recorded and transcribed, and then coded and analyzed for themes relating to pulmonary symptoms and related psychosocial impacts.
Six pulmonary symptoms were identified as central to CF: cough, sputum production, wheeze, chest tightness, difficulty breathing/shortness of breath, and fever. Emotional impacts included frustration, sadness/depression, irritability, worry, difficulty sleeping; while activity impacts included time spent sitting or lying down, reduction of usual activities, and missing school or work. In all, 8 symptom items, 4 emotional impacts items, and 4 activity impacts were selected for inclusion on a new daily diary. We also assessed triggers for seeking care.
Using a qualitative inductive methodology, we have obtained patient centered data regarding pulmonary symptoms and burdens and have created a novel patient reported outcome measure for CF. Future studies will assess the validity of the instruments.
囊性纤维化（CF）特定的患者源性和报告症状工具是评估CF新疗法疗效的关键步骤。
我们在华盛顿大学以及西雅图儿童医院和地区医疗中心的两个CF项目中，采用日重建法进行了25次深入的定性访谈，并进行了9次认知访谈。访谈进行了录音和转录，然后对与肺部症状及相关心理社会影响相关的主题进行编码和分析。
确定了六种肺部症状是CF的核心症状：咳嗽、咳痰、喘息、胸闷、呼吸困难/呼吸急促和发热。情绪影响包括沮丧、悲伤/抑郁、易怒、担忧、睡眠困难；而活动影响包括坐着或躺着的时间、日常活动减少以及缺课或旷工。总共选择了8个症状项目、4个情绪影响项目和4个活动影响项目纳入新的日常日记。我们还评估了寻求治疗的触发因素。
采用定性归纳方法，我们获得了以患者为中心的有关肺部症状和负担的数据，并为CF创建了一种新的患者报告结局指标。未来的研究将评估这些工具的有效性。
