16177University of Utah College of Nursing, Salt Lake City, UT, USA.
NYU School of Medicine, New York, NY, USA.
Am J Hosp Palliat Care. 2021 Oct;38(10):1242-1249. doi: 10.1177/1049909120986121. Epub 2021 Jan 13.
The ideal clinical model to deliver palliative care to patients with advanced kidney disease is currently unknown. Internationally, ambulatory kidney palliative care clinics have emerged with positive outcomes, yet there is limited data from the United States (US). In this exploratory study we report perceptions of a US-based ambulatory kidney palliative care clinic from the perspective of patient and caregiver attendees. The objective of this study was to inform further improvement of our clinical program.
Semi-structured interviews were conducted to elicit the patient and caregiver experience. Eleven interviews (8 patients with chronic kidney disease stage IV or V and 3 caregivers) were analyzed using qualitative description design.
We identified 2 themes: "Communication addressing the emotional and physical aspects of disease" and "Filling gaps in care"; Subthemes include perceived value in symptom management, assistance with coping with disease, engagement in advance care planning, program satisfaction and patient activation.
Qualitative analysis showed that attendees of an ambulatory kidney palliative care clinic found the clinic enhanced the management of their kidney disease and provided services that filled current gaps in their care. Shared experiences highlight the significant challenges of life with kidney disease and the possible benefits of palliative care for this population. Further study to determine the optimal model of care for kidney palliative care is needed. Inclusion of the patient and caregiver perspective will be essential in this development.
目前尚不清楚为晚期肾病患者提供姑息治疗的理想临床模式。在国际上，流动肾脏姑息治疗诊所已取得积极成果，但美国（US）的数据有限。在这项探索性研究中，我们从患者和护理人员的角度报告了美国基于门诊的肾脏姑息治疗诊所的看法。本研究的目的是为进一步改善我们的临床方案提供信息。
采用半结构式访谈法，从患者和护理人员的角度了解其体验。采用定性描述设计对 11 次访谈（8 名慢性肾脏病 4 或 5 期患者和 3 名护理人员）进行了分析。
我们确定了 2 个主题：“沟通解决疾病的身心方面”和“填补护理空白”；亚主题包括对症状管理、应对疾病协助、参与预先护理计划、对计划的满意度和患者积极性的感知价值。
定性分析表明，门诊肾脏姑息治疗诊所的就诊者发现该诊所增强了他们对肾脏疾病的管理，并提供了满足他们当前护理需求的服务。共同的经验突显了肾病患者生活中面临的巨大挑战，以及姑息治疗对这一人群可能带来的益处。需要进一步研究确定肾脏姑息治疗的最佳护理模式。在这一发展过程中，纳入患者和护理人员的观点至关重要。
