Retel Helmrich Isabel Rosalie Arianne, van Klaveren David, Andelic Nada, Lingsma Hester, Maas Andrew, Menon David, Polinder Suzanne, Røe Cecilie, Steyerberg Ewout W, Van Veen Ernest, Wilson Lindsay
Department of Public Health, Center for Medical Decision Making, Erasmus Medical Center, Rotterdam, Zuid-Holland, The Netherlands
Department of Public Health, Center for Medical Decision Making, Erasmus Medical Center, Rotterdam, Zuid-Holland, The Netherlands.
J Neurol Neurosurg Psychiatry. 2022 May 10;93(7):785-96. doi: 10.1136/jnnp-2021-326615.
Following traumatic brain injury (TBI), the clinical focus is often on disability. However, patients' perceptions of well-being can be discordant with their disability level, referred to as the 'disability paradox'. We aimed to examine the relationship between disability and health-related quality of life (HRQoL) following TBI, while taking variation in personal, injury-related and environment factors into account.
We used data from the Collaborative European NeuroTrauma Effectiveness Research in Traumatic Brain Injury study. Disability was assessed 6 months post-injury by the Glasgow Outcome Scale-Extended (GOSE). HRQoL was assessed by the SF-12v2 physical and mental component summary scores and the Quality of Life after Traumatic Brain Injury overall scale. We examined mean total and domain HRQoL scores by GOSE. We quantified variance in HRQoL explained by GOSE, personal, injury-related and environment factors with multivariable regression.
Six-month outcome assessments were completed in 2075 patients, of whom 78% had mild TBI (Glasgow Coma Scale 13-15). Patients with severe disability had higher HRQoL than expected on the basis of GOSE alone, particularly after mild TBI. Up to 50% of patients with severe disability reported HRQoL scores within the normative range. GOSE, personal, injury-related and environment factors explained a limited amount of variance in HRQoL (up to 29%).
Contrary to the idea that discrepancies are unusual, many patients with poor functional outcomes reported well-being that was at or above the boundary considered satisfactory for the normative sample. These findings challenge the idea that satisfactory HRQoL in patients with disability should be described as 'paradoxical' and question common views of what constitutes 'unfavourable' outcome.
创伤性脑损伤（TBI）后，临床关注焦点通常是残疾情况。然而，患者对幸福感的认知可能与他们的残疾程度不一致，这被称为“残疾悖论”。我们旨在研究TBI后残疾与健康相关生活质量（HRQoL）之间的关系，同时考虑个人、损伤相关和环境因素的差异。
我们使用了欧洲创伤性脑损伤协作有效性研究的数据。在受伤6个月后，通过扩展格拉斯哥预后量表（GOSE）评估残疾情况。通过SF - 12v2身体和心理成分汇总得分以及创伤性脑损伤后生活质量总体量表评估HRQoL。我们根据GOSE检查了HRQoL的平均总分和领域得分。我们通过多变量回归量化了由GOSE、个人、损伤相关和环境因素解释的HRQoL方差。
2075例患者完成了6个月的结局评估，其中78%为轻度TBI（格拉斯哥昏迷量表13 - 15分）。严重残疾患者的HRQoL高于仅基于GOSE预期的水平，尤其是在轻度TBI之后。高达50%的严重残疾患者报告的HRQoL得分在正常范围内。GOSE、个人、损伤相关和环境因素解释的HRQoL方差有限（高达29%）。
与差异不常见的观点相反，许多功能结局较差的患者报告的幸福感处于或高于正常样本认为满意的界限。这些发现挑战了残疾患者中令人满意的HRQoL应被描述为“矛盾”的观点，并质疑了构成“不良”结局的常见观点。
