与小儿麻痹后遗症肌肉功能相关的健康相关生活质量、自我报告的损伤及日常生活活动
Health-related quality of life, self-reported impairments and activities of daily living in relation to muscle function in post-polio syndrome.
作者信息
Gocheva Vanya, Hafner Patricia, Orsini Anna-Lena, Schmidt Simone, Schaedelin Sabine, Rueedi Nicole, Rubino-Nacht Daniela, Weber Peter, Fischer Dirk
机构信息
Division of Neuropediatrics and Developmental Medicine, University Children's Hospital of Basel (UKBB),University of Basel, Spitalstrasse 33, Postfach, 4056, Basel, Switzerland.
Division of Neurology, University Hospital Basel, Basel, Switzerland.
出版信息
J Patient Rep Outcomes. 2020 Jul 16;4(1):59. doi: 10.1186/s41687-020-00226-5.
BACKGROUND
The symptoms of post-polio syndrome (PPS) and its resulting disabilities can affect quality of life and the ability to perform daily activities. No study has comprehensively analysed how various patient-reported outcome measures (PROMs) are associated with objectively assessed physical function in patients with PPS.
AIM
To investigate health-related quality of life (HRQOL), self-reported impairments and activities of daily living during 6 months and evaluate their association with clinical muscle function outcomes in individuals with PPS.
METHODS
Twenty-seven patients with PPS were included in the study. At baseline and 6 months, patients were administered PROMs measuring HRQOL (WHOQOL-BREF), self-reported impairments related to PPS (SIPP-RS) and activities of daily living (IBM-FRS). Clinical muscle function outcomes included 6 min walking distance (6MWD) and motor function measure (MFM).
RESULTS
There were no changes in self-reported impairments (25.52 to 24.93, p = 0.40), activities of daily living (33.89 to 33.30, p = 0.20), 6MWD (391.52 to 401.85, p = 0.30) and MFM (83.87 to 85.46, p = 0.14) during 6 months, while the HRQOL psychological health decreased during this period (76.85 to 72.38, p = 0.05). A strong association was found between activities of daily living and clinical muscle function outcomes (6MWD: ß = 0.02, 95% CI: 0.02;0.03, t = 6.88, p < 0.01; MFM: ß = 0.25, 95% CI: 0.17;0.33, t = 6.69, p < 0.01). Self-reported impairments and HRQOL domains were not associated with the clinical muscle outcomes.
CONCLUSIONS
Study findings indicate that objectively measured walking and motor abilities do not reflect patient's perspectives of their HRQOL and impairment due to PPS. More research is needed to assess changes over time and capture clinically meaningful changes in individuals with PPS and to increase the understanding of how the patient's perspective of disability measured by PROMs is related to objectively measured walking and motor abilities.
TRIAL REGISTRATION
ClinicalTrials.gov Identifier ( NCT02801071 ) registered June 15, 2016.
背景
小儿麻痹后遗症（PPS）的症状及其导致的残疾会影响生活质量和日常活动能力。尚无研究全面分析各种患者报告结局指标（PROMs）与PPS患者客观评估的身体功能之间的关联。
目的
调查PPS患者6个月期间的健康相关生活质量（HRQOL）、自我报告的损伤和日常生活活动情况，并评估它们与临床肌肉功能结局的关联。
方法
27例PPS患者纳入本研究。在基线和6个月时，对患者进行测量HRQOL（世界卫生组织生活质量简表，WHOQOL-BREF）、与PPS相关的自我报告损伤（PPS自我报告量表修订版，SIPP-RS）和日常生活活动（改良巴氏指数，IBM-FRS）的PROMs评估。临床肌肉功能结局包括6分钟步行距离（6MWD）和运动功能测量（MFM）。
结果
6个月期间，自我报告的损伤（从25.52降至24.93，p = 0.40）、日常生活活动（从33.89降至33.30，p = 0.20）、6MWD（从391.52增至401.85，p = 0.30）和MFM（从83.87增至85.46，p = 0.14）均无变化，而在此期间HRQOL心理健康状况下降（从76.85降至72.38，p = 0.05）。发现日常生活活动与临床肌肉功能结局之间存在强关联（6MWD：β = 0.02，95%CI：0.02；0.03，t = 6.88，p < 0.01；MFM：β = 0.25，95%CI：0.17；0.33，t = 6.69，p < 0.01）。自我报告的损伤和HRQOL领域与临床肌肉结局无关。
结论
研究结果表明，客观测量的步行和运动能力不能反映PPS患者对其HRQOL和损伤的看法。需要更多研究来评估随时间的变化，并捕捉PPS患者临床上有意义的变化，以增进对PROMs测量的患者残疾观念与客观测量的步行和运动能力之间关系的理解。
试验注册
ClinicalTrials.gov标识符（NCT02801071），于2016年6月15日注册。
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