The Importance of Integration of Stakeholder Views in Core Outcome Set Development: Otitis Media with Effusion in Children with Cleft Palate
The Importance of Integration of Stakeholder Views in Core Outcome Set Development: Otitis Media with Effusion in Children with Cleft Palate
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DOI：
10.1371/journal.pone.0129514
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发表时间：
2015-06-26
期刊：
影响因子：
3.7
通讯作者：
Williamson, Paula R.
中科院分区：
文献类型：
--
作者：
Harman, Nicola L.;Bruce, Iain A.;Williamson, Paula R.
背景大约 75% 的腭裂 (CP) 儿童有渗出性中耳炎 (OME) 病史。缺乏有效治疗这些儿童 OME 的证据。先前研究中结果测量的不一致导致人们呼吁开发核心结果集（COS）。尽管已发表的 COS 数量有所增加，但迄今为止，患者对 COS 开发过程的参与以及整合患者和卫生专业人员观点的方法仍然有限。方法和结果通过回顾文献确定了先前研究中测量的结果列表。然后，我们向关键利益相关者征求了对这些结果重要性的意见：耳鼻喉 (ENT) 外科医生、听力学家、唇腭裂外科医生、言语和语言治疗师、唇腭裂专科护士、心理学家、家长和儿童。在德尔福进行的三轮调查中征求了卫生专业人员的意见，参与者被要求使用定制的在线系统对每个结果进行评分。家长和孩子还被要求对一项调查的结果进行评分，并通过半结构化访谈深入了解 OME。德尔福调查、访谈和家长/患者调查的结果汇集在所有利益相关者代表参加的最终共识会议上。最终的十一项结果达成了“共识”的定义，形成了推荐的 COS：听证会；慢性中耳炎（COM）；奥梅；接受性语言能力；言语发展；心理社会发展；急性中耳炎（AOM）；胆脂瘤;治疗的副作用；倾听技巧；结论我们对 CP 儿童 OME 治疗研究中至少应测量的结果提出了建议。开发过程吸收了主要利益相关者的意见，并使用新颖的方法来整合医疗保健专业人员、家长和儿童的意见。
BackgroundApproximately 75% of children with cleft palate (CP) have Otitis Media with Effusion (OME) histories. Evidence for the effective management of OME in these children is lacking. The inconsistency in outcome measurement in previous studies has led to a call for the development of a Core Outcome Set (COS). Despite the increase in the number of published COS, involvement of patients in the COS development process, and methods to integrate the views of patients and health professionals, to date have been limited.Methods and FindingsA list of outcomes measured in previous research was identified through reviewing the literature. Opinion on the importance of each of these outcomes was then sought from key stakeholders: Ear, Nose and Throat (ENT) surgeons, audiologists, cleft surgeons, speech and language therapists, specialist cleft nurses, psychologists, parents and children. The opinion of health professionals was sought in a three round Delphi survey where participants were asked to score each outcome using a bespoke online system. Parents and children were also asked to score outcomes in a survey and provided an in-depth insight into having OME through semi-structured interviews. The results of the Delphi survey, interviews and parent/patient survey were brought together in a final consensus meeting with representation from all stakeholders. A final set of eleven outcomes reached the definition of "consensus in" to form the recommended COS: hearing; chronic otitis media (COM); OME; receptive language skills; speech development; psycho social development; acute otitis media (AOM); cholesteatoma; side effects of treatment; listening skills; otalgia.ConclusionsWe have produced a recommendation about the outcomes that should be measured, as a minimum, in studies of the management of OME in children with CP. The development process included input from key stakeholders and used novel methodology to integrate the opinion of healthcare professionals, parents and children.