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多发性骨软骨瘤患者的健康相关生活质量及相关危险因素:一项横断面研究。

Health-related quality of life and associated risk factors in patients with Multiple Osteochondromas: a cross-sectional study.

作者信息

Boarini Manila, Tremosini Morena, Di Cecco Alessia, Gnoli Maria, Brizola Evelise, Mordenti Marina, Pedrini Elena, Locatelli Manuela, Lanza Marcella, Antonioli Diego, Gallone Giovanni, Rocca Gino, Staals Eric L, Trisolino Giovanni, Sangiorgi Luca

机构信息

Department of Rare Skeletal Disorders, IRCCS Istituto Ortopedico Rizzoli, Via di Barbiano 1/10, 40136, Bologna, Italy.

Unit of Pediatric Orthopedics and Traumatology, IRCCS Istituto Ortopedico Rizzoli, Bologna, Italy.

出版信息

Qual Life Res. 2024 May;33(5):1323-1334. doi: 10.1007/s11136-024-03604-4. Epub 2024 Mar 8.

Abstract

PURPOSE

To evaluate the health-related quality of life and associated risk factors for Multiple Osteochondromas patients.

METHODS

A cross-sectional, observational study was conducted from May to December 2022 during the routine visit to the referral center for rare skeletal disorders. All patients with Multiple Osteochondromas aged ≥ 3 years were included. EuroQol 5-dimension questionnaires, and demographic, clinical, and surgical history data were collected. Descriptive statistics, Fisher's exact test, One-sample t-test, Spearman's correlation, and multiple linear and logistic regression were performed to analyze the data. Results are reported following STROBE guidelines.

RESULTS

A total of 128 patients were included in the study, with a mean age of 14 [SD, 10] years. The mean EQ-5D Index Value was 0.863 [SD, 0.200] and the EQ-VAS was 84 [SD, 19] with a positive correlation between two scores [r = 0.541, p < 0.001]. Patients frequently referred problems in pain/discomfort [78.8%], anxiety/depression [50%], and usual activities [38.8%] dimensions. Increasing age was the common risk factor for health-related quality of life [p < 0.000], as well as Index Value and VAS scores were significantly lower in surgical patients [p = 0.001 and p < 0.001, respectively].

CONCLUSION

Increasing age and surgical procedures were found highly associated with reduced health-related quality of life in Multiple Osteochondromas patients. Our findings provide relevant information to support the establishment of patient-centered healthcare pathways and pave the way for further research into medical and non-medical therapeutic strategies for these patients.

摘要

目的

评估多发性骨软骨瘤患者的健康相关生活质量及相关危险因素。

方法

于2022年5月至12月在罕见骨骼疾病转诊中心的常规就诊期间进行了一项横断面观察性研究。纳入所有年龄≥3岁的多发性骨软骨瘤患者。收集欧洲五维健康量表问卷以及人口统计学、临床和手术史数据。进行描述性统计、Fisher精确检验、单样本t检验、Spearman相关性分析以及多元线性和逻辑回归分析数据。结果按照STROBE指南报告。

结果

本研究共纳入128例患者,平均年龄为14岁[标准差,10岁]。平均EQ-5D指数值为0.863[标准差,0.200],EQ视觉模拟量表评分为84分[标准差,19分],两个评分之间呈正相关[r = 0.541,p < 0.001]。患者在疼痛/不适[78.8%]、焦虑/抑郁[50%]和日常活动[38.8%]维度中经常提及问题。年龄增长是健康相关生活质量的常见危险因素[p < 0.000],手术患者的指数值和视觉模拟量表评分也显著较低[p分别为0.001和p < 0.001]。

结论

发现年龄增长和手术与多发性骨软骨瘤患者健康相关生活质量下降高度相关。我们的研究结果提供了相关信息,以支持建立以患者为中心的医疗保健途径,并为进一步研究这些患者的医学和非医学治疗策略铺平道路。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/b351/11045590/092d009d1529/11136_2024_3604_Fig1_HTML.jpg

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