Institute of Health & Biomedical Innovation @ Centre for Children's Health Research, Queensland University of Technology, 62 Graham Street, South Brisbane, Queensland, 4101, Australia.
School of Medicine and Menzies Health Institute Queensland, Griffith University, Gold Coast, Queensland, 4222, Australia.
BMC Health Serv Res. 2019 Aug 13;19(1):561. doi: 10.1186/s12913-019-4414-5.
Bronchiectasis in children is an important, but under-researched, chronic pulmonary disorder that has negative impacts on health-related quality of life. Despite this, it does not receive the same attention as other chronic pulmonary conditions in children such as cystic fibrosis. We measured health resource use and health-related quality of life over a 12-month period in children with bronchiectasis.
We undertook a prospective cohort study of 85 children aged < 18-years with high-resolution chest computed-tomography confirmed bronchiectasis undergoing management in three pediatric respiratory medical clinics in Darwin and Brisbane, Australia and Auckland, New Zealand. Children with cystic fibrosis or receiving cancer treatment were excluded. Data collected included the frequency of healthcare attendances (general practice, specialists, hospital and/or emergency departments, and other), medication use, work and school/childcare absences for parents/carers and children respectively, and both parent/carer and child reported quality of life and cough severity.
Overall, 951 child-months of observation were completed for 85 children (median age 8.7-years, interquartile range 5.4-11.3). The mean (standard deviation) number of exacerbations was 3.3 (2.2) per child-year. Thirty of 264 (11.4%) exacerbation episodes required hospitalization. Healthcare attendance and antibiotic use rates were high (30 and 50 per 100 child-months of observation respectively). A carer took leave from work for 53/236 (22.5%) routine clinic visits. Absences from school/childcare due to bronchiectasis were 24.9 children per 100 child-months. Quality of life scores for both the parent/carer and child were highly-correlated with one another, remained stable over time and were negatively associated with cough severity.
Health resource use in this cohort of children is high, reflecting their severe disease burden. Studies are now needed to quantify the direct and societal costs of disease and to evaluate interventions that may reduce disease burden, particularly hospitalizations.
儿童支气管扩张症是一种重要但研究不足的慢性肺部疾病，对健康相关生活质量有负面影响。尽管如此，它并没有像儿童其他慢性肺部疾病（如囊性纤维化）那样受到同样的关注。我们在 12 个月的时间内测量了患有支气管扩张症的儿童的健康资源利用和健康相关生活质量。
我们对澳大利亚达尔文和布里斯班以及新西兰奥克兰的三个儿科呼吸医学诊所接受管理的 85 名年龄<18 岁的高分辨率胸部计算机断层扫描确诊支气管扩张症的儿童进行了前瞻性队列研究。排除了囊性纤维化或接受癌症治疗的儿童。收集的数据包括医疗保健就诊的频率（全科医生、专科医生、医院和/或急诊部门以及其他）、药物使用、父母/照顾者的工作和儿童的学校/儿童保育缺勤率，以及父母/照顾者和儿童分别报告的生活质量和咳嗽严重程度。
总体而言，为 85 名儿童完成了 951 个儿童月的观察（中位数年龄为 8.7 岁，四分位距为 5.4-11.3）。每名儿童年的平均（标准差）恶化次数为 3.3（2.2）次。264 次恶化事件中有 30 次（11.4%）需要住院治疗。医疗保健就诊和抗生素使用率很高（分别为每 100 个儿童月 30 次和 50 次）。由于支气管扩张症，照顾者有 53/236（22.5%）次常规诊所就诊缺勤。因支气管扩张症导致儿童缺课/缺勤率为每 100 个儿童月 24.9 人。父母/照顾者和儿童的生活质量评分彼此高度相关，随着时间的推移保持稳定，与咳嗽严重程度呈负相关。
该队列儿童的健康资源利用量很高，反映了他们严重的疾病负担。现在需要研究来量化疾病的直接和社会成本，并评估可能减轻疾病负担的干预措施，特别是住院治疗。
