Driehuis Esmee, Janse Roemer J, Roeterdink Anneke J, Konijn Wanda S, van Lieshout Thomas S, Vogels Theodôr J F M, Goto Namiko A, Broese van Groenou Marjolein I, Dekker Friedo W, van Jaarsveld Brigit C, Abrahams Alferso C
Department of Nephrology and Hypertension, University Medical Center Utrecht, Utrecht, The Netherlands.
Department of Nephrology, Amsterdam UMC location Vrije Universiteit Amsterdam, Amsterdam, The Netherlands.
Clin Kidney J. 2024 Oct 7;17(11):sfae300. doi: 10.1093/ckj/sfae300. eCollection 2024 Nov.
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.
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.
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.
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.
非正式照护者在透析护理中发挥着关键作用，但可能承受巨大负担，这可能会对照护者和患者的结局产生影响。目前缺乏关于照护者负担与健康相关生活质量（HRQoL）以及与患者报告结局（PROs）之间关系的研究。因此，我们旨在：（i）描述非正式照护者所经历的负担和HRQoL；（ii）研究这些因素与透析患者的HRQoL和症状之间的关系。
我们在透析开始时对202对成年非正式照护者 - 透析患者进行了横断面研究。使用非正式照护自我感知压力（SPPIC）问卷测量照护者负担，使用12项简短健康调查（SF - 12）测量HRQoL，使用透析症状指数（DSI）测量症状数量和负担。使用线性和逻辑有序回归分析数据。
约38%的照护者经历了中度至高度负担。患者较低的心理HRQoL[调整优势比（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）与照护者负担加重的较高几率相关。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）也与照护者较低的心理HRQoL相关。
我们发现三分之一的照护者感到中度至高度负担，且照护者负担与患者的心理HRQoL和症状相关。这些发现凸显了认识非正式照护者及其负担性质的重要性。
