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血栓性血小板减少性紫癜康复后长期存在的健康相关生活质量缺陷。

Long-term deficits in health-related quality of life after recovery from thrombotic thrombocytopenic purpura.

作者信息

Lewis Qurana F, Lanneau Marion S, Mathias Susan D, Terrell Deirdra R, Vesely Sara K, George James N

机构信息

Department of Biostatistics and Epidemiology, College of Public Health, University of Oklahoma Health Sciences Center, Oklahoma City, Oklahoma, USA.

出版信息

Transfusion. 2009 Jan;49(1):118-24. doi: 10.1111/j.1537-2995.2008.01938.x. Epub 2008 Oct 2.

DOI:10.1111/j.1537-2995.2008.01938.x
PMID:18954401
Abstract

BACKGROUND

After recovery from thrombotic thrombocytopenic purpura (TTP), patients commonly describe persistent problems with memory, concentration, and endurance.

STUDY DESIGN AND METHODS

The Oklahoma TTP-HUS Registry, an inception cohort of 364 patients, January 1, 1989, through June 30, 2007, has annually evaluated health-related quality-of-life since 1998 with the Short Form (SF)-36, a widely used questionnaire that assesses eight domains of physical and mental health.

RESULTS

A total of 128 patients were eligible for this study (age >or= 18 years, alive in January 1998 without prior relapse, survival and no relapse >or=1 year after recovery, no overt disability or additional disorders); 118 (92%) completed the SF-36. At their initial assessment, these patients had significantly worse functioning and well-being than the US population for all domains (p < 0.05). Forty-nine patients who had their initial assessment more than 2 years after recovery had better scores for three domains than 69 patients who had their initial assessment 2 years or less after recovery (p < 0.05). Among these 69 patients, there was no difference between subgroups: 1) idiopathic versus other categories of TTP, 2) the presence or absence of severe ADAMTS13 deficiency, 3) the presence or absence of severe neurologic abnormalities during the episode of TTP, and 4) less than 10 or 10 or more plasma exchange treatments required to achieve remission (p > 0.05). Analysis of serial assessments in 72 (61%) of the 118 patients who had two or more assessments within 5 years of recovery and no intervening relapses demonstrated no significant improvement in any of the domains.

CONCLUSION

After recovery from TTP, patients may have persistent cognitive and physical difficulties.

摘要

背景

血栓性血小板减少性紫癜(TTP)患者康复后,常描述存在记忆、注意力和耐力方面的持续问题。

研究设计与方法

俄克拉荷马TTP - HUS注册研究纳入了1989年1月1日至2007年6月30日期间的364例患者,自1998年起每年使用简短健康调查问卷(SF - 36)评估与健康相关的生活质量,该问卷广泛用于评估身心健康的八个领域。

结果

共有128例患者符合本研究条件(年龄≥18岁,1998年1月存活且无既往复发,康复后存活且无复发≥1年,无明显残疾或其他疾病);118例(92%)完成了SF - 36调查。在初次评估时,这些患者在所有领域的功能和幸福感均显著低于美国人群(p < 0.05)。康复后2年以上进行初次评估的49例患者在三个领域的得分高于康复后2年及以内进行初次评估的69例患者(p < 0.05)。在这69例患者中,各亚组之间无差异:1)特发性TTP与其他类型TTP,2)是否存在严重的ADAMTS13缺乏,3)TTP发作期间是否存在严重神经异常,4)缓解所需血浆置换治疗次数少于10次或10次及以上(p > 0.05)。对118例在康复后5年内进行了两次或更多次评估且无中间复发的患者中的72例(61%)进行的系列评估分析显示,任何领域均无显著改善。

结论

TTP患者康复后可能存在持续的认知和身体困难。

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