用PROMIS®计算机化适应性测试测量外周血管畸形患者的健康相关生活质量

IF 2 3区医学 Q2 SURGERY

Journal of Plastic Reconstructive and Aesthetic Surgery Pub Date : 2025-06-05 DOI:10.1016/j.bjps.2025.05.036

Delano J. de Oliveira Marreiros , Max M. Lokhorst , Danny A. Young-Afat , Merel L.E. Stor , Sophie E.R. Horbach , Leo D. Roorda , Michiel A.J. Luijten , Lotte Haverman , Chantal M.A.M. van der Horst , Phyllis I. Spuls

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引用次数: 0

摘要

患者报告结果测量信息系统（PROMIS）计算机化适应性测试（CATs）已被推荐用于测量罕见疾病的健康相关生活质量（HRQoL）。目的评估PROMIS CATs是否可靠地测量成人血管畸形患者HRQoL核心结果域，如果可靠，为该人群建立参考值。方法在这项前瞻性队列研究中，我们的三级转诊中心邀请血管畸形的成年患者完成PROMIS CATs测量HRQoL核心结果域，然后在完成第一次问卷后7天再次进行测试。患者完成了疼痛干扰、身体功能、焦虑、抑郁、参与社会角色和活动能力的PROMIS CATs测试，以及疼痛强度的PROMIS数字评定量表（NRS）。通过计算类内相关系数（ICC）、测量标准误差（SEM）和最小可检测变化（SDC）来量化重测信度。ICC≥0.7被认为是适当的。此外，还计算了每个CAT的描述性统计数据，并与荷兰一般人口进行了比较。结果123例患者完成了至少一项CAT检查，55例患者完成了至少一项CAT复查。ICCs均在0.85以上，SEMs均在5分以下，sdc均在10分左右，说明重测信度和测量误差较好。与荷兰普通人群的PROMIS参考值相比，血管畸形患者的所有平均CAT评分均在正常范围内。结论promis猫能够可靠地测量血管畸形成人的生理、心理和社会HRQoL。建立了该种群中PROMIS猫的参考值。

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Measuring health-related quality of life in patients with peripheral vascular malformations with PROMIS® computerized adaptive tests

Background

The Patient-Reported Outcomes Measurement Information System (PROMIS) computerized adaptive tests (CATs) have been recommended for measuring health-related quality of life (HRQoL) in rare diseases.

Objective

To assess whether PROMIS CATs reliably measure HRQoL core outcome domains in adults with vascular malformations, and if so, to establish reference values for this population.

Methods

In this prospective cohort study, adult patients with vascular malformations at our tertiary referral center were invited to complete PROMIS CATs measuring HRQoL core outcome domains, followed by a retest seven days after completing the first questionnaires. Patients completed PROMIS CATs on pain interference, physical function, anxiety, depression, ability to participate in social roles and activities, and the PROMIS numeric rating scale (NRS) on pain intensity. Test-retest reliability was quantified by calculating intraclass correlation coefficients (ICC), standard errors of measurement (SEM) and smallest detectable changes (SDC). An ICC ≥0.7 was considered adequate. Moreover, descriptive statistics for each CAT were calculated and compared against the Dutch general population.

Results

One-hundred-twenty-three patients completed at least one CAT and 55 patients completed the retest of at least one CAT. All ICCs were above 0.85, SEMs were under 5 points and SDCs were around 10 points, indicating adequate test-retest reliability and measurement errors. All average CAT scores of patients with vascular malformations were within normal limits compared to PROMIS reference values for the Dutch general population.

Conclusion

PROMIS CATs reliably measure physical, mental and social HRQoL in adults with vascular malformations. Reference values for PROMIS CATs in this population were established.

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来源期刊

Journal of Plastic Reconstructive and Aesthetic Surgery 医学-外科

CiteScore

3.10

自引率

11.10%

发文量

578

审稿时长

3.5 months

期刊介绍： JPRAS An International Journal of Surgical Reconstruction is one of the world''s leading international journals, covering all the reconstructive and aesthetic aspects of plastic surgery. The journal presents the latest surgical procedures with audit and outcome studies of new and established techniques in plastic surgery including: cleft lip and palate and other heads and neck surgery, hand surgery, lower limb trauma, burns, skin cancer, breast surgery and aesthetic surgery.