Department of Orthopaedic Surgery, Joint Research, OLVG, Amsterdam, The Netherlands
Department of Education, OLVG, Amsterdam, The Netherlands.
BMJ Open. 2021 Jul 5;11(7):e049418. doi: 10.1136/bmjopen-2021-049418.
Multiple osteochondromas (MO) is a rare hereditary disease characterised by numerous benign bone tumours. Its chronic aspect requires a well-organised transition from paediatric care to adult care; however, little is known on organising this care specific for patients with MO. This study aims to gain insight on this topic.
Convergent mixed-method study.
This study was conducted at the orthopaedic and paediatrics department of an MO-expertise centre in the Netherlands.
12 patients, 10 parents and 10 healthcare professionals were interviewed. An additional survey was completed by 2 young adults.
The (1) themes on transition, identified through template analysis and (2) transfer experience and satisfaction assessed by an 18-item On Your Own Feet-Transfer Experience Scale (OYOF-TES, range: 18-90) and by Numeric Rating Scale (NRS, range: 1-10).
The following three key themes were identified in the qualitative analysis: (1) patient and parent in the lead can be encouraged by self-management tools, (2) successful transfers need interprofessional collaboration and communication and (3) how can we prepare patients for the transitional process? Stakeholders' insights to improve transition were listed and divided into these three themes.Several important aspects were underlined, particularly within the first theme; speaking-up was difficult for patients especially when parents were not directly involved. Moreover, the high psychological impact of the disease requires coaching of self-management and psychological counselling to facilitate stakeholders in their changing roles.Twenty patients completed the quantitative survey. Mean satisfaction score with the transfer process was poor, which was assessed with the NRS (mean=5.7±2.1; range: 1-9) and the OYOF-TES (mean=56.3±14.2; range: 32-85). The OYOF-TES only showed a negative correlation (R=0.25; p=0.026) with the number of surgical interventions in the past.
Overall, the transfer process was found unsatisfactory. Improvement can be achieved by supporting and guiding the patients to be in the lead of their care. Moreover, preparation for transfer and a multidisciplinary approach may enhance successful transition.
多发性骨软骨瘤（MO）是一种罕见的遗传性疾病，其特征为大量良性骨肿瘤。由于其慢性特征，需要从儿科护理到成人护理进行良好的过渡；然而，对于 MO 患者的具体护理组织方式知之甚少。本研究旨在对此进行探讨。
收敛混合方法研究。
本研究在荷兰一家 MO 专业中心的骨科和儿科进行。
12 名患者、10 名家长和 10 名医疗保健专业人员接受了采访。另外有 2 名年轻人完成了一份额外的调查。
通过模板分析确定（1）过渡主题，通过 18 项“On Your Own Feet-Transfer Experience Scale”（OYOF-TES，范围：18-90）和数字评分量表（NRS，范围：1-10）评估转移经验和满意度。
在定性分析中确定了以下三个关键主题：（1）可以通过自我管理工具鼓励患者和家长发挥主导作用，（2）成功的转移需要跨专业的合作和沟通，（3）如何让患者为过渡过程做好准备？列出了利益相关者改善过渡的意见，并分为这三个主题。强调了几个重要方面，特别是在第一个主题中；患者尤其在父母未直接参与的情况下，难以主动表达意见。此外，该疾病的高心理影响需要进行自我管理和心理咨询的指导，以帮助利益相关者转变角色。20 名患者完成了定量调查。转移过程的满意度评分较低，NRS（均值=5.7±2.1；范围：1-9）和 OYOF-TES（均值=56.3±14.2；范围：32-85）评估结果均显示如此。OYOF-TES 仅与过去手术干预的次数呈负相关（R=0.25；p=0.026）。
总体而言，转移过程的满意度较低。通过支持和指导患者主导自己的护理，可以提高满意度。此外，为转移做好准备并采用多学科方法可能会促进成功过渡。
