{"title":"患者和护理人员对马德龙畸形影响的印象:CoULD登记分析。","authors":"","doi":"10.1016/j.jhsa.2024.01.019","DOIUrl":null,"url":null,"abstract":"<div><h3>Purpose</h3><p>This study seeks to investigate demographics of patients with Madelung deformity<span><span> in a large, geographically diverse sample and understand patient and caregiver perceptions of the impact of this condition. We hypothesized that patients with untreated Madelung deformity have greater pain and lower function compared to the normal population but are less affected than the chosen control group, namely, patients with proximal radioulnar </span>synostosis (PRUS).</span></p></div><div><h3>Methods</h3><p>This retrospective study queried the Congenital Upper Limb Differences (CoULD) Registry, a multicenter registry of patients treated in tertiary care pediatric hospitals. We searched patients enrolled as of July 2022 and identified 3,980 total patients and 66 (1.7%) with a diagnosis of Madelung deformity. We reviewed demographics and Patient-Reported Outcomes Measurement Information System (PROMIS; peer relations, depressive symptoms, pain interference, and upper extremity function domains) scores at time of enrollment. We used a matched cohort comparison with propensity scoring for 50 patients with Madelung deformity and 50 patients with PRUS (control cohort).</p></div><div><h3>Results</h3><p>Patients with Madelung deformity presented at an average age of 13.1 years (± 2.1 years). Ninety-eight percent were female, and 82% were White. Seventy-four percent had distal radius-only deformity. Upper extremity PROMIS scores in both the Madelung deformity and the PRUS groups were significantly “worse” than normal, confirming our hypothesis. The Madelung deformity and PRUS cohort scores were not consistently different from one another. PROMIS scores from all other domains, including pain interference, were similar to, or better than normal for both groups, disproving the second part of our hypothesis.</p></div><div><h3>Conclusions</h3><p>Patients with Madelung deformity averaged 13 years of age and were nearly all female, and the majority had only distal involvement of the radius. Patients with Madelung deformity had lower function based on PROMIS scores, similar to the control cohort, whereas all other PROMIS measures were similar to or better when compared to normal values. Pain interference scores in both cohorts were lower than normal values. Patients with Madelung deformity have decreased function, similar to the comparative cohort of patients with PRUS, but do not present with increased pain.</p></div><div><h3>Type of study/level of evidence</h3><p>Symptom Prevalence III.</p></div>","PeriodicalId":54815,"journal":{"name":"Journal of Hand Surgery-American Volume","volume":null,"pages":null},"PeriodicalIF":2.1000,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":"{\"title\":\"Patient and Caregiver Impressions of the Impact of Madelung Deformity: A CoULD Registry Analysis\",\"authors\":\"\",\"doi\":\"10.1016/j.jhsa.2024.01.019\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<div><h3>Purpose</h3><p>This study seeks to investigate demographics of patients with Madelung deformity<span><span> in a large, geographically diverse sample and understand patient and caregiver perceptions of the impact of this condition. We hypothesized that patients with untreated Madelung deformity have greater pain and lower function compared to the normal population but are less affected than the chosen control group, namely, patients with proximal radioulnar </span>synostosis (PRUS).</span></p></div><div><h3>Methods</h3><p>This retrospective study queried the Congenital Upper Limb Differences (CoULD) Registry, a multicenter registry of patients treated in tertiary care pediatric hospitals. We searched patients enrolled as of July 2022 and identified 3,980 total patients and 66 (1.7%) with a diagnosis of Madelung deformity. We reviewed demographics and Patient-Reported Outcomes Measurement Information System (PROMIS; peer relations, depressive symptoms, pain interference, and upper extremity function domains) scores at time of enrollment. We used a matched cohort comparison with propensity scoring for 50 patients with Madelung deformity and 50 patients with PRUS (control cohort).</p></div><div><h3>Results</h3><p>Patients with Madelung deformity presented at an average age of 13.1 years (± 2.1 years). Ninety-eight percent were female, and 82% were White. Seventy-four percent had distal radius-only deformity. Upper extremity PROMIS scores in both the Madelung deformity and the PRUS groups were significantly “worse” than normal, confirming our hypothesis. The Madelung deformity and PRUS cohort scores were not consistently different from one another. PROMIS scores from all other domains, including pain interference, were similar to, or better than normal for both groups, disproving the second part of our hypothesis.</p></div><div><h3>Conclusions</h3><p>Patients with Madelung deformity averaged 13 years of age and were nearly all female, and the majority had only distal involvement of the radius. Patients with Madelung deformity had lower function based on PROMIS scores, similar to the control cohort, whereas all other PROMIS measures were similar to or better when compared to normal values. Pain interference scores in both cohorts were lower than normal values. Patients with Madelung deformity have decreased function, similar to the comparative cohort of patients with PRUS, but do not present with increased pain.</p></div><div><h3>Type of study/level of evidence</h3><p>Symptom Prevalence III.</p></div>\",\"PeriodicalId\":54815,\"journal\":{\"name\":\"Journal of Hand Surgery-American Volume\",\"volume\":null,\"pages\":null},\"PeriodicalIF\":2.1000,\"publicationDate\":\"2024-08-01\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"Journal of Hand Surgery-American Volume\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://www.sciencedirect.com/science/article/pii/S0363502324000534\",\"RegionNum\":2,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q2\",\"JCRName\":\"ORTHOPEDICS\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Hand Surgery-American Volume","FirstCategoryId":"3","ListUrlMain":"https://www.sciencedirect.com/science/article/pii/S0363502324000534","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"ORTHOPEDICS","Score":null,"Total":0}
Patient and Caregiver Impressions of the Impact of Madelung Deformity: A CoULD Registry Analysis
Purpose
This study seeks to investigate demographics of patients with Madelung deformity in a large, geographically diverse sample and understand patient and caregiver perceptions of the impact of this condition. We hypothesized that patients with untreated Madelung deformity have greater pain and lower function compared to the normal population but are less affected than the chosen control group, namely, patients with proximal radioulnar synostosis (PRUS).
Methods
This retrospective study queried the Congenital Upper Limb Differences (CoULD) Registry, a multicenter registry of patients treated in tertiary care pediatric hospitals. We searched patients enrolled as of July 2022 and identified 3,980 total patients and 66 (1.7%) with a diagnosis of Madelung deformity. We reviewed demographics and Patient-Reported Outcomes Measurement Information System (PROMIS; peer relations, depressive symptoms, pain interference, and upper extremity function domains) scores at time of enrollment. We used a matched cohort comparison with propensity scoring for 50 patients with Madelung deformity and 50 patients with PRUS (control cohort).
Results
Patients with Madelung deformity presented at an average age of 13.1 years (± 2.1 years). Ninety-eight percent were female, and 82% were White. Seventy-four percent had distal radius-only deformity. Upper extremity PROMIS scores in both the Madelung deformity and the PRUS groups were significantly “worse” than normal, confirming our hypothesis. The Madelung deformity and PRUS cohort scores were not consistently different from one another. PROMIS scores from all other domains, including pain interference, were similar to, or better than normal for both groups, disproving the second part of our hypothesis.
Conclusions
Patients with Madelung deformity averaged 13 years of age and were nearly all female, and the majority had only distal involvement of the radius. Patients with Madelung deformity had lower function based on PROMIS scores, similar to the control cohort, whereas all other PROMIS measures were similar to or better when compared to normal values. Pain interference scores in both cohorts were lower than normal values. Patients with Madelung deformity have decreased function, similar to the comparative cohort of patients with PRUS, but do not present with increased pain.
期刊介绍:
The Journal of Hand Surgery publishes original, peer-reviewed articles related to the pathophysiology, diagnosis, and treatment of diseases and conditions of the upper extremity; these include both clinical and basic science studies, along with case reports. Special features include Review Articles (including Current Concepts and The Hand Surgery Landscape), Reviews of Books and Media, and Letters to the Editor.