Department of Nephrology, Amsterdam UMC location Vrije Universiteit Amsterdam, Amsterdam, the Netherlands
Department of Internal Medicine, Northwest Clinics, Alkmaar, the Netherlands.
BMJ Open. 2022 Nov 10;12(11):e064172. doi: 10.1136/bmjopen-2022-064172.
Starting dialysis not only has a major impact on the life of patients but also on their informal caregivers. Previous research shows greater burden and lower quality of life among caregivers of dialysis patients compared with the general population. Unfortunately, the evidence on the course of both positive and negative experience in caregivers of incident dialysis patients is scarce. Furthermore, well-designed, prospective, multicentre studies comparing caregiving of home dialysis patients with in-centre dialysis patients are lacking. This paper proposes a protocol to assess the trajectory of experiences (both positive and negative) and quality of life of caregivers of home dialysis patients compared with caregivers of in-centre dialysis patients.
This paper presents a protocol for a prospective, observational, multicentre cohort study which extends the ongoing Dutch nOcturnal and hoME dialysis Study To Improve Clinical Outcomes (DOMESTICO). This study will include at least 200 adult caregivers of patients who start dialysis therapy and have been included in the DOMESTICO study. Positive experiences of the caregivers will be the primary outcome parameter of this study, and negative experiences and health-related quality of life the secondary outcome parameters. Required support will be investigated as an exploratory finding. Outcome parameters will be assessed at baseline, and at 6 and 12 months after start of dialysis using validated questionnaires.
Ethical approval for this study has been obtained from the Medical Research Ethics Committee of the Amsterdam University Medical Centre. The results of this study will be disseminated by publication in a peer-reviewed journal and through presentations at conferences and seminars.
开始透析不仅对患者的生活产生重大影响，对其非正规照护者也有影响。既往研究显示，与一般人群相比，透析患者的照护者负担更重，生活质量更低。不幸的是，关于初发透析患者照护者积极和消极体验过程的证据很少。此外，缺乏比较家庭透析患者和中心透析患者照护的精心设计的前瞻性多中心研究。本文提出了一项方案，以评估家庭透析患者照护者与中心透析患者照护者的经历（包括积极和消极经历）和生活质量的轨迹。
本文提出了一项方案，该方案是一项前瞻性、观察性、多中心队列研究，扩展了正在进行的荷兰 nocturnal 和 hoME 透析研究以改善临床结局（DOMESTICO）。本研究将包括至少 200 名开始透析治疗且已纳入 DOMESTICO 研究的患者的成年照护者。照护者的积极体验将是本研究的主要结局参数，消极体验和健康相关生活质量将是次要结局参数。所需支持将作为探索性发现进行调查。使用经过验证的问卷，在基线时以及透析开始后 6 个月和 12 个月评估结局参数。
该研究已获得阿姆斯特丹大学医学中心医学研究伦理委员会的批准。本研究的结果将通过发表在同行评议的期刊上以及通过会议和研讨会的演讲来传播。
