University of Amsterdam, The Netherlands.
Harvard Medical School, Boston, MA, USA.
Hand (N Y). 2023 Mar;18(2_suppl):24S-31S. doi: 10.1177/15589447211054133. Epub 2021 Nov 12.
Madelung deformity is a rare congenital hand difference with little known regarding the patient perspective. In this cross-sectional survey study, we harnessed the global reach of social media to understand the clinical spectrum of Madelung deformity and its impact on physical, mental, and social health.
A survey was developed based on a previously published protocol and multiple Patient-Reported Outcomes Measurement Information System (PROMIS) short forms. The survey was distributed on several Madelung deformity communities on Facebook and Instagram. -scores were calculated, interpreted, and compared between patients who underwent surgery and those who did not. Correlations between scores were calculated using the Spearman rank correlation coefficient.
Mean PROMIS scores for adults were as follows: pain intensity, 4.9 ± 2.8; pain interference, 57.6 ± 10.0; upper extremity, 35.2 ± 8.1; depression, 53.8 ± 11.1; anxiety, 55.4 ± 11.4; and ability to participate in social roles and activities, 42.5 ± 7.7. Mean scores for children were as follows: pain intensity, 5.0 ± 2.8; pain interference, 55.7 ± 11.3; upper extremity function, 24.6 ± 10.4; depressive symptoms, 57.7 ± 11.3; anxiety, 57.3 ± 11.9; and peer relationships, 42.2 ± 10.3.
Madelung deformity has significant effects on patients' physical, mental, and social well-being, even after surgical treatment. Using social media, we were able to compensate for Madelung deformity's rarity by engaging an international audience, demonstrating the feasibility to conduct research through it, and providing a global perspective of the disease entity.
Madelung 畸形是一种罕见的先天性手部畸形，患者视角的相关信息知之甚少。在这项横断面调查研究中，我们利用社交媒体的全球影响力，了解 Madelung 畸形的临床特征及其对身体、心理和社会健康的影响。
根据先前发表的方案和多个患者报告的结果测量信息系统（PROMIS）简表制定了调查。该调查在 Facebook 和 Instagram 上的多个 Madelung 畸形社区进行了分发。计算了评分，并对接受手术和未接受手术的患者之间的评分进行了比较。使用 Spearman 秩相关系数计算了评分之间的相关性。
成年人的 PROMIS 平均评分如下：疼痛强度，4.9±2.8；疼痛干扰，57.6±10.0；上肢，35.2±8.1；抑郁，53.8±11.1；焦虑，55.4±11.4；参与社会角色和活动的能力，42.5±7.7。儿童的平均评分如下：疼痛强度，5.0±2.8；疼痛干扰，55.7±11.3；上肢功能，24.6±10.4；抑郁症状，57.7±11.3；焦虑，57.3±11.9；同伴关系，42.2±10.3。
即使接受了手术治疗，Madelung 畸形也会对患者的身体、心理和社会健康产生重大影响。通过使用社交媒体，我们能够通过接触国际受众来弥补 Madelung 畸形的罕见性，展示通过它进行研究的可行性，并提供该疾病实体的全球视角。
