Being autonomous in dialysis: association with occupational status, social activity level, quality of life, and physical activity level.

Fabrice Huré, Éric Laruelle, Thibault Dolley-Hitze, Charles Chazot, Sahar Bayat, Cécile Couchoud
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Abstract

Introduction: End-stage kidney disease radically alters the patients' lives. The aim of this pilot study was to describe this impact in patients treated with autonomous dialysis modality in France: Long Nocturnal Hemodialysis (LNHD), Daily Home Hemodialysis (DHHD), Automated Peritoneal Dialysis (APD), and hemodialysis in a self-care unit (SCHD).

Methods: French voluntary patients (n = 182) treated with an autonomous dialysis modality completed an anonymous e-questionnaire that included items on type of paid employment, voluntary work and leisure activities, and three self-report questionnaires (SONG-Fatigue, RPAQ, and EQ-5D-5L).

Results: Overall, 33% of patients had a remunerated activity, 10% of patients were considered as sedentary and 39.6% reported an important physical activity. The SONG-Fatigue median score was 3 (IQR 2-5). 54%, 89% and 56% of patients did not report any problem with mobility, self-care, and usual activities, respectively. 35% of patients did not complain about pain or discomfort and 59% had no anxiety or depression symptoms. Patients estimated their global health status at 60 (IQ 50-80). Compared to SCHD, the LNHD group had more often a remunerated activity and the DHHD group reported fewer problems with usual activities. The APD and LNHD groups experienced pain more often.

Conclusion: This pilot survey of middle-aged patients with autonomous dialysis showed that dialysis affected their professional status, social activities, fatigue, quality of life and energy expenditure with few differences according to dialysis modality.

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自主透析:与职业地位、社会活动水平、生活质量和身体活动水平相关。
终末期肾病从根本上改变了患者的生活。这项初步研究的目的是描述在法国接受自主透析方式治疗的患者的影响:长夜间血液透析(LNHD)、每日家庭血液透析(DHHD)、自动腹膜透析(APD)和自我护理单元血液透析(SCHD)。方法:接受自主透析治疗的法国自愿患者(n = 182)完成了一份匿名电子问卷,包括有偿就业类型、志愿工作和休闲活动项目,以及三份自我报告问卷(SONG-Fatigue、RPAQ和EQ-5D-5L)。结果:总体而言,33%的患者有有偿活动,10%的患者被认为是久坐不动,39.6%的患者报告有重要的身体活动。SONG-Fatigue中位评分为3分(IQR 2-5)。54%、89%和56%的患者分别报告在行动能力、自我保健和日常活动方面没有任何问题。35%的患者没有抱怨疼痛或不适,59%的患者没有焦虑或抑郁症状。患者估计他们的整体健康状况为60(智商50-80)。与SCHD相比,LNHD组有更多的有偿活动,而DHHD组在日常活动中报告的问题较少。APD和LNHD组更频繁地经历疼痛。结论:对中年自主透析患者进行的初步调查显示,透析对其职业地位、社会活动、疲劳、生活质量和能量消耗的影响在不同的透析方式下差异不大。
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