Children's Hearing Centre, St Michael's Hospital, University Hospitals Bristol NHS Foundation Trust, Bristol, UK.
Life and Health Sciences, Aston University, Birmingham, UK.
Clin Otolaryngol. 2019 Jan;44(1):32-38. doi: 10.1111/coa.13228. Epub 2018 Oct 8.
To scope current service provision across England for management of otitis media with effusion and hearing loss in children with Down syndrome; to explore professional decision-making about managing otitis media with effusion and hearing loss; and to explore patient and public views on the direction of future research.
Mixed methods including a service evaluation of NHS clinical practice through a structured telephone survey; a qualitative study of professional decision-making with in-depth interviews collected and analysed using grounded theory methods; patient/public involvement consultations.
Twenty-one audiology services in England took part in the evaluation; 10 professionals participated in the qualitative study; 21 family members, 10 adults with Down syndrome and representatives from two charities contributed to the consultations.
There was variation across services in the frequency of routine hearing surveillance, approaches to managing conductive hearing loss in infancy and provision of hearing aids and grommets. There was variation in how professionals describe their decision-making, reflecting individual treatment preferences, differing approaches to professional remit and institutional factors. The consultations identified that research should focus on improving practical support for managing the condition and supporting decision-making about interventions.
There is system-level variation in the provision of services and individual-level variation in how professionals make clinical decisions. As a consequence, there is inequity of access to hearing health care for children with Down syndrome. Future research should focus on developing core outcomes for research and care, and on improving decision support for families.
调查英格兰目前在管理唐氏综合征儿童分泌性中耳炎和听力损失方面的服务提供情况；探讨管理分泌性中耳炎和听力损失的专业决策；并探讨患者和公众对未来研究方向的看法。
混合方法，包括通过结构化电话调查对英国国民保健制度临床实践进行服务评估；通过深入访谈进行专业决策的定性研究，并使用扎根理论方法进行收集和分析；患者/公众参与咨询。
英格兰的 21 家听力学服务机构参与了评估；10 名专业人员参与了定性研究；21 名家庭成员、10 名唐氏综合征成年人和来自两个慈善机构的代表参与了咨询。
在常规听力监测的频率、婴儿期管理传导性听力损失的方法以及助听器和鼓膜切开术的提供方面，服务之间存在差异。专业人员描述其决策的方式存在差异，反映了个体治疗偏好、不同的专业职权处理方法和机构因素。咨询确定，研究应侧重于改善管理该疾病的实际支持，并支持干预措施的决策。
服务的提供存在系统层面的差异，专业人员做出临床决策的方式存在个体层面的差异。因此，唐氏综合征儿童获得听力保健的机会不平等。未来的研究应侧重于为研究和护理制定核心结果，并改善家庭的决策支持。
