哮喘联盟

   摘要
   背景：与电子健康记录（EHR）连接的患者门户网站在促进慢性疾病患儿家庭和儿科医生共同决策上具有良好前景。MyAsthma，作为一个支持小儿哮喘患者共同决策的、与电子健康病例相连接的患者门户网站，本文评估了其可行性，可接受性及其影响。
   方法：我们在3家初级医疗机构针对MyAsthma进行了6个月的随机对照研究。受试家庭随机分为MyAsthma组和标准治疗组，MyAsthma可跟踪家庭哮喘治疗的关注点和目标、儿童哮喘症状、药物副反应和依从性，并提供决策支持。研究结果包括MyAsthma用于家庭的可行性和可接受性，儿童保健使用程度和哮喘控制程度以及家长和儿童的上学上班请假天数。运用描述性统计和纵向回归模型评价研究组之间的结果差异。
   结果：本次研究纳入了60个家庭，每组30个（平均年龄8.3岁）；研究共计6个月，57%的干预组家长在至少5个月中使用过MyAsthma。患有中度至重度持续性哮喘的儿童家长使用门户高于其他家长；92%对MyAsthma感到满意。家长报告指出，使用MyAsthma可以增进其与官方的沟通并提高哮喘管理能力，认识持续性关注治疗的重要性。干预组家长报告显示儿童哮喘发作频率较低，家长因哮喘请假的天数较少。
   结论：家庭运用与电子健康记录（EHR）连接的门户网站是可行的及可被接受的，并且能够改善具有临床意义的结果。
 

（苏欣 审校）
Pediatrics. 2015 Mar 9. pii: peds.2014-3167. [Epub ahead of print]
 

Parent-Reported Outcomes of a Shared Decision-Making Portal in Asthma: A Practice-Based RCT.
 

Fiks AG1, Mayne SL2, Karavite DJ3, Suh A2, O'Hara R3, Localio AR4, Ross M4, Grundmeier RW5.

Author information
 

ABSTRACT
BACKGROUND:Electronic health record (EHR)-linked patient portals are a promising approach to facilitate shared decision-making between families of children with chronic conditions and pediatricians. This study evaluated the feasibility, acceptability, and impact of MyAsthma, an EHR-linked patient portal supporting shared decision-making for pediatric asthma.
METHODS:We conducted a 6-month randomized controlled trial of MyAsthma at 3 primary care practices. Families were randomized to MyAsthma, which tracks families' asthma treatment concerns and goals, children's asthma symptoms, medication side effects and adherence, and provides decision support, or to standard care. Outcomes included the feasibility and acceptability of MyAsthma for families, child health care utilization and asthma control, and the number of days of missed school (child) and work (parent). Descriptive statistics and longitudinal regression models assessed differences in outcomes between study arms.
RESULTS:We enrolled 60 families, 30 in each study arm (mean age 8.3 years); 57% of parents in the intervention group used MyAsthma during at least 5 of the 6 study months. Parents of children with moderate to severe persistent asthma used the portal more than others; 92% were satisfied with MyAsthma. Parents reported that use improved their communication with the office, ability to manageasthma, and awareness of the importance of ongoing attention to treatment. Parents in the intervention group reported that children had a lower frequency of asthma flares and intervention parents missed fewer days of work due to asthma.
CONCLUSIONS:Use of an EHR-linked asthma portal was feasible and acceptable to families and improved clinically meaningful outcomes.
 

Pediatrics. 2015 Mar 9. pii: peds.2014-3167. [Epub ahead of print]