X-连锁低磷酸盐血症(XLH)是一种罕见的,多系统,需要多学科方法的无效疾病。在XLH没有具体的行动,既没有发现患者的具体需求,也没有发现评估这些需求的方法。因此,为了确定XLH患者及其护理人员的需求,我们在参考中心组织了焦点小组,以期建立教育会议。焦点小组包括XLH儿童,XLH成人,或者看护人平行跑。每组由一名接受过治疗教育培训的人领导(护士,儿科肾脏病学家)与另一家专门从事XLH的医疗保健提供者(风湿病学家,肾脏病学家)。另外一名具有XLH知识的人(临床研究助理,儿科住院医师)花了几分钟。每个疗程的持续时间为1.5小时;要求XLH患者/护理人员回答他们日常生活和生活质量的年龄适应的“开放性问题”。最后,全球归还。后来对确定的需求进行了分组和分析,这让我们能够建立教育会议。XLH儿童组包括5名儿童,XLH成人组包括10名成人,照顾者组包括6名父母或伴侣。确定了主要需求:对XLH的了解,治疗,牙科护理和适应的身体活动,关于成人社会职业适应和经济支持的其他问题。还确定了伙伴患者共同建立支持计划。该研究使我们能够使用焦点小组方法确定XLH患者及其护理人员的需求,然后,利用这些需求,为XLH患者建立教育会议和治疗教育计划。
X-linked hypophosphatemia (
XLH) is a rare, multi-systemic, invalidating disease requiring a multi-disciplinary approach. No specific action in
XLH, neither for the patients\' specific needs nor for the methodology for the evaluation of these were found. Thus, to identify the needs of XLH patients and their caregivers, we organised focus groups in our reference centre with a view to build educational sessions. Focus groups including either
XLH children,
XLH adults, or caregivers ran in parallel. Each group was led by a person trained in therapeutic education (nurse, paediatric nephrologist) with another healthcare provider specialised in XLH (rheumatologist, nephrologist). One additional person with knowledge of XLH (clinical research associate, paediatric resident) took minutes. The duration of each session was 1.5h;
XLH patients/caregivers were asked to answer age-adapted \"open questions\" on their daily life and quality of life. At the end, a global restitution was made. The needs identified were later grouped and analysed, which allowed us to build the educational sessions. The
XLH children group included 5 children, the
XLH adults group included 10 adults, and the caregivers group included 6 parents or partners. Major needs were identified: knowledge of XLH, treatment, dental care and adapted physical activity, with additional questions on socio-professional adaptations and financial support in adults. Partner patients were also identified to co-build the support programme. The study allowed us to identify the needs of XLH patients and their caregivers using the focus group method and then, using these needs, to build educational sessions and a therapeutic education programme for XLH patients.