Informal caregiver burden in dialysis care and how it relates to patients' health-related quality of life and symptoms.

IF 3.9 2区 医学 Q1 UROLOGY & NEPHROLOGY Clinical Kidney Journal Pub Date : 2024-10-07 eCollection Date: 2024-11-01 DOI:10.1093/ckj/sfae300
Esmee Driehuis, Roemer J Janse, Anneke J Roeterdink, Wanda S Konijn, Thomas S van Lieshout, Theodôr J F M Vogels, Namiko A Goto, Marjolein I Broese van Groenou, Friedo W Dekker, Brigit C van Jaarsveld, Alferso C Abrahams
{"title":"Informal caregiver burden in dialysis care and how it relates to patients' health-related quality of life and symptoms.","authors":"Esmee Driehuis, Roemer J Janse, Anneke J Roeterdink, Wanda S Konijn, Thomas S van Lieshout, Theodôr J F M Vogels, Namiko A Goto, Marjolein I Broese van Groenou, Friedo W Dekker, Brigit C van Jaarsveld, Alferso C Abrahams","doi":"10.1093/ckj/sfae300","DOIUrl":null,"url":null,"abstract":"<p><strong>Background: </strong>Informal caregivers play a crucial role in dialysis care but may experience significant burden, potentially affecting both caregiver and patient outcomes. Research on caregiver burden and health-related quality of life (HRQoL) and the relation to patient-reported outcomes (PROs) is lacking. Therefore, we aimed to (i) describe informal caregivers' experienced burden and HRQoL and (ii) investigate how these are related to dialysis patients' HRQoL and symptoms.</p><p><strong>Methods: </strong>We conducted a cross-sectional study at dialysis initiation with 202 adult informal caregiver-dialysis patient dyads. Caregiver burden was measured with the Self-Perceived Pressure from Informal Care (SPPIC) questionnaire, HRQoL with the 12-item Short Form Health Survey (SF-12), and symptom number and burden with the Dialysis Symptom Index (DSI). Data were analysed using linear and logistic ordinal regression.</p><p><strong>Results: </strong>Around 38% of caregivers experienced moderate to high burden. Patients' lower mental HRQoL [adjusted odds ratio (aOR) = 0.95, 95% confidence interval (CI) 0.92; 0.99], higher symptom number (aOR = 1.07, 95% CI 1.02; 1.12) and higher symptom burden (aOR = 1.03, 95% CI 1.01; 1.04) were associated with greater odds of higher caregiver burden. Patients' lower mental HRQoL (β = 0.30, 95% CI 0.15; 0.46), higher symptom number (β = -0.55, 95% CI -0.78; -0.31) and higher symptom burden (β = -0.17, 95% CI -0.25; -0.10) were also associated with a lower mental HRQoL in caregivers.</p><p><strong>Conclusion: </strong>We show that a third of caregivers feel moderate to high burden and that caregiver burden is associated with patients' mental HRQoL and symptoms. These findings highlight the importance of recognizing informal caregivers and the nature of their burden.</p>","PeriodicalId":10435,"journal":{"name":"Clinical Kidney Journal","volume":null,"pages":null},"PeriodicalIF":3.9000,"publicationDate":"2024-10-07","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11528300/pdf/","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Clinical Kidney Journal","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1093/ckj/sfae300","RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"2024/11/1 0:00:00","PubModel":"eCollection","JCR":"Q1","JCRName":"UROLOGY & NEPHROLOGY","Score":null,"Total":0}
引用次数: 0

Abstract

Background: Informal caregivers play a crucial role in dialysis care but may experience significant burden, potentially affecting both caregiver and patient outcomes. Research on caregiver burden and health-related quality of life (HRQoL) and the relation to patient-reported outcomes (PROs) is lacking. Therefore, we aimed to (i) describe informal caregivers' experienced burden and HRQoL and (ii) investigate how these are related to dialysis patients' HRQoL and symptoms.

Methods: We conducted a cross-sectional study at dialysis initiation with 202 adult informal caregiver-dialysis patient dyads. Caregiver burden was measured with the Self-Perceived Pressure from Informal Care (SPPIC) questionnaire, HRQoL with the 12-item Short Form Health Survey (SF-12), and symptom number and burden with the Dialysis Symptom Index (DSI). Data were analysed using linear and logistic ordinal regression.

Results: Around 38% of caregivers experienced moderate to high burden. Patients' lower mental HRQoL [adjusted odds ratio (aOR) = 0.95, 95% confidence interval (CI) 0.92; 0.99], higher symptom number (aOR = 1.07, 95% CI 1.02; 1.12) and higher symptom burden (aOR = 1.03, 95% CI 1.01; 1.04) were associated with greater odds of higher caregiver burden. Patients' lower mental HRQoL (β = 0.30, 95% CI 0.15; 0.46), higher symptom number (β = -0.55, 95% CI -0.78; -0.31) and higher symptom burden (β = -0.17, 95% CI -0.25; -0.10) were also associated with a lower mental HRQoL in caregivers.

Conclusion: We show that a third of caregivers feel moderate to high burden and that caregiver burden is associated with patients' mental HRQoL and symptoms. These findings highlight the importance of recognizing informal caregivers and the nature of their burden.

查看原文
分享 分享
微信好友 朋友圈 QQ好友 复制链接
本刊更多论文
透析护理中非正式护理人员的负担及其与患者健康相关的生活质量和症状的关系。
背景:非正规护理人员在透析护理中发挥着至关重要的作用,但他们可能会承受巨大的负担,从而可能影响护理人员和患者的治疗效果。目前还缺乏有关护理人员负担和健康相关生活质量(HRQoL)以及与患者报告结果(PROs)之间关系的研究。因此,我们的目标是:(i) 描述非正规护理人员所经历的负担和 HRQoL;(ii) 调查这些负担和 HRQoL 与透析患者的 HRQoL 和症状之间的关系:我们在开始透析时对 202 名成年非正规护理人员和透析患者进行了横断面研究。照顾者的负担通过 "自我感觉的非正式照顾压力(SPPIC)"问卷进行测量, HRQoL 通过 12 项简表健康调查(SF-12)进行测量,症状数量和负担通过 "透析症状指数(DSI)"进行测量。数据采用线性回归和逻辑序数回归进行分析:结果:约 38% 的护理人员有中度到高度的负担。患者较低的心理 HRQoL [调整赔率 (aOR) = 0.95,95% 置信区间 (CI) 0.92; 0.99]、较高的症状数量(aOR = 1.07,95% CI 1.02; 1.12)和较高的症状负担(aOR = 1.03,95% CI 1.01; 1.04)与较高的护理人员负担几率相关。患者较低的心理 HRQoL(β = 0.30,95% CI 0.15;0.46)、较高的症状数量(β = -0.55,95% CI -0.78;-0.31)和较高的症状负担(β = -0.17,95% CI -0.25;-0.10)也与护理人员较低的心理 HRQoL 有关:结论:我们的研究表明,三分之一的照顾者感到中度到高度的负担,照顾者的负担与患者的心理 HRQoL 和症状有关。这些发现强调了认识非正式护理人员及其负担性质的重要性。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
求助全文
约1分钟内获得全文 去求助
来源期刊
Clinical Kidney Journal
Clinical Kidney Journal Medicine-Transplantation
CiteScore
6.70
自引率
10.90%
发文量
242
审稿时长
8 weeks
期刊介绍: About the Journal Clinical Kidney Journal: Clinical and Translational Nephrology (ckj), an official journal of the ERA-EDTA (European Renal Association-European Dialysis and Transplant Association), is a fully open access, online only journal publishing bimonthly. The journal is an essential educational and training resource integrating clinical, translational and educational research into clinical practice. ckj aims to contribute to a translational research culture among nephrologists and kidney pathologists that helps close the gap between basic researchers and practicing clinicians and promote sorely needed innovation in the Nephrology field. All research articles in this journal have undergone peer review.
期刊最新文献
Correction to: The ERA Registry Annual Report 2021: a summary. Correction to: Reduction in kidney function decline and risk of severe clinical events in agalsidase beta-treated Fabry disease patients: a matched analysis from the Fabry Registry. Mid- and long-term renal outcomes after metabolic surgery in a multi-center, multi-ethnic Asian cohort with T2DM. Anti-phospholipid antibodies nephropathy is associated with an increased risk of kidney failure: a systematic literature review and meta-analysis. Informal caregiver burden in dialysis care and how it relates to patients' health-related quality of life and symptoms.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
现在去查看 取消
×
提示
确定
0
微信
客服QQ
Book学术公众号 扫码关注我们
反馈
×
意见反馈
请填写您的意见或建议
请填写您的手机或邮箱
已复制链接
已复制链接
快去分享给好友吧!
我知道了
×
扫码分享
扫码分享
Book学术官方微信
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术
文献互助 智能选刊 最新文献 互助须知 联系我们:info@booksci.cn
Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。
Copyright © 2023 Book学术 All rights reserved.
ghs 京公网安备 11010802042870号 京ICP备2023020795号-1