Ferguson Eric, Wright Marilyn, Carter Teresa, Van Halderen Cindy, Vaughan Renata, Otter Margaret
Children's Developmental Rehabilitation Programme, McMaster Children's Hospital, Hamilton;
Paediatr Child Health. 2011 Aug;16(7):395-8. doi: 10.1093/pch/16.7.395.
Ventilators for home use, manual and mechanically assisted coughing techniques, and the services of in-home respiratory therapists are options for youth with Duchenne muscular dystrophy (DMD). Evidence supports the use of these modalities, but there seems to be few youth who are receiving these therapies. Is there a knowledge transfer issue? Is there a lack of resources? What is the best way to discuss the issues? What do youth and parents want?
To determine practices, attitudes and beliefs regarding the timing and content of client/family communication related to ventilatory support decisions for individuals with DMD.
A questionnaire was sent to all 19 children's treatment centres in Ontario. The lead clinician responded on behalf of his or her centre. Another questionnaire was given to 11 families who attended a parent support meeting.
Respondents from the treatment centres who provide services for youth with DMD indicated that there are resources in terms of personnel and an obligation to provide information about ventilatory support, but provision of information is often late and/or inconsistent. The family respondents wanted more information and they wanted it earlier than they are currently receiving it.
Parents and youth dealing with DMD have many resources at their disposal in Ontario. The evidence is clear that there are long-term health benefits to providing ventilatory support as well as instruction in coughing assistance. Due to the classical nature of disease progression in DMD, information should be provided within reasonable timelines.
家用呼吸机、手动和机械辅助咳嗽技术以及家庭呼吸治疗师服务是杜氏肌营养不良症（DMD）青少年患者的选择。有证据支持使用这些方式，但似乎很少有青少年接受这些治疗。是存在知识传递问题吗？是缺乏资源吗？讨论这些问题的最佳方式是什么？青少年及其父母想要什么？
确定与DMD患者通气支持决策相关的客户/家庭沟通的时机和内容方面的实践、态度和信念。
向安大略省所有19个儿童治疗中心发送了问卷。首席临床医生代表其所在中心进行了回复。向参加家长支持会议的11个家庭发放了另一份问卷。
为DMD青少年患者提供服务的治疗中心的受访者表示，在人员方面有资源，并且有义务提供有关通气支持的信息，但信息提供往往较晚且/或不一致。家庭受访者希望获得更多信息，并且希望比目前更早得到这些信息。
在安大略省，应对DMD的父母和青少年可以利用许多资源。有明确证据表明，提供通气支持以及咳嗽辅助指导对长期健康有益。由于DMD疾病进展的典型性质，应在合理的时间范围内提供信息。
