Beasant Lucy, Mills Nicola, Crawley Esther
1 School of Social & Community Medicine, Centre for Child & Adolescent Health, University of Bristol, Oakfield Grove, UK.
2 School of Social and Community Medicine, University of Bristol, Canynge Hall, 39 Whatley Road, UK.
Prim Health Care Res Dev. 2014 Apr;15(2):134-42. doi: 10.1017/S1463423613000121. Epub 2013 Apr 25.
Paediatric chronic fatigue syndrome or myalgic encephalopathy (CFS/ME) is relatively common and disabling. Current guidance recommends referral to specialist services, although some general practitioners believe the label of CFS/ME is harmful and many are not confident about diagnosing CFS/ME. Aim Explore whether or not adolescents and their mothers value referral to a specialist service for young people with CFS/ME.
A qualitative study nested within a feasibility study of interventions for CFS/ME [Specialist Medical Intervention and Lightning Evaluation (SMILE)]. In-depth interviews were undertaken with 13 mothers and 12 adolescents participating in the SMILE study. Transcripts were systematically assigned codes using the qualitative data organisation package NVivo and analysed thematically using techniques of constant comparison.
Gaining access to the specialist service was difficult and took a long time. Mothers felt that they needed to be proactive and persistent, partly because of a lack of knowledge in primary and secondary care. Having gained access, mothers felt the CFS/ME service was useful because it recognised and acknowledged their child's condition and opened channels of dialogue between health-care professionals and education providers. Adolescents reported that specialist medical care resulted in better symptom management, although some adolescents did not like the fact that the treatment approach limited activity.
Adolescents and their mothers value receiving a diagnosis from a specialist service and making progress in managing CFS/ME. General practitioners should support adolescents with CFS/ME in accessing CFS/ME specialist services, consistent with current guidance.
儿童慢性疲劳综合征或肌痛性脑脊髓炎（CFS/ME）相对常见且会导致残疾。当前指南建议转诊至专科服务机构，尽管一些全科医生认为CFS/ME这个标签有害，而且许多人对诊断CFS/ME缺乏信心。目的：探讨青少年及其母亲是否重视为患有CFS/ME的年轻人转诊至专科服务机构。
一项定性研究嵌套于针对CFS/ME的干预措施可行性研究[专科医学干预与快速评估（SMILE）]中。对参与SMILE研究的13名母亲和12名青少年进行了深入访谈。使用定性数据组织软件NVivo对访谈记录进行系统编码，并采用持续比较技术进行主题分析。
获得专科服务困难且耗时较长。母亲们觉得她们需要积极主动且坚持不懈，部分原因是初级和二级医疗保健机构缺乏相关知识。获得专科服务后，母亲们认为CFS/ME服务很有用，因为它认可并承认了孩子的病情，还打通了医疗保健专业人员与教育机构之间的对话渠道。青少年报告称，专科医疗护理使症状得到了更好的控制，尽管一些青少年不喜欢治疗方法限制活动这一事实。
青少年及其母亲重视从专科服务机构获得诊断，并在管理CFS/ME方面取得进展。全科医生应按照当前指南，支持患有CFS/ME的青少年获得CFS/ME专科服务。
