Purtell Louise, Sowa P Marcin, Berquier Ilse, Scuderi Carla, Douglas Carol, Taylor Bernadette, Kramer Katrina, Hoy Wendy, Healy Helen, Bonner Ann
School of Nursing, Faculty of Health, Queensland University of Technology, Brisbane, Queensland, Australia
Kidney Health Service, Metro North Hospital & Health Service, Queensland Health, Brisbane, Queensland, Australia.
BMJ Support Palliat Care. 2018 Dec 4. doi: 10.1136/bmjspcare-2018-001630.
For many people with advanced kidney disease, their physical, psychological and emotional needs remain unmet. Kidney supportive care, fully integrating specialist kidney and palliative care teams, responds to the emotional and symptom distress in this cohort who may be on a non-dialysis care pathway or on dialysis and approaching end of life. We aimed to analyse and describe the operation and patient characteristics of a new kidney supportive care programme (KSCp).
A multidisciplinary KSCp was introduced through a tertiary hospital in Brisbane, Australia. Operational information and characteristics of referred patients were collected from internal databases and electronic medical records and analysed descriptively. Patient data were collected using validated instruments to assess symptom burden, health-related quality of life, health state, functional status and performance at clinic entry and analysed descriptively.
129 people with advanced kidney disease were referred to the KSCp within the first year (median age 74 (range 27.7-90.5), 48.1% female, median Charlson Comorbidity Index score 7 (IQR 6-8) and mean Integrated Palliative care Outcome Scale Renal score 19.6±9.8). 59% were currently receiving dialysis. The leading reason for referral was symptom management (37%). While quality of life and health state varied considerably among the cohort, in general, these parameters were well below population norms.
Results indicate that patients referred to the KSCp were those with a strong need for a patient-centred, integrated model of care. Shifting focus to co-ordinated, multidisciplinary care rather than discrete specialty silos appears key to addressing the challenging clinical problems in end-of-life care.
对于许多晚期肾病患者来说，他们的身体、心理和情感需求仍未得到满足。肾脏支持性护理充分整合了肾脏专科和姑息治疗团队，可应对这一队列中可能处于非透析护理路径或正在接受透析且接近生命末期患者的情感和症状困扰。我们旨在分析和描述一项新的肾脏支持性护理计划（KSCp）的运作情况及患者特征。
通过澳大利亚布里斯班的一家三级医院引入了一个多学科KSCp。从内部数据库和电子病历中收集转诊患者的操作信息和特征，并进行描述性分析。在患者就诊时，使用经过验证的工具收集患者数据，以评估症状负担、健康相关生活质量、健康状况、功能状态和表现，并进行描述性分析。
在第一年，有129名晚期肾病患者被转诊至KSCp（中位年龄74岁（范围27.7 - 90.5岁），48.1%为女性，中位查尔森合并症指数评分为7（四分位间距6 - 8），姑息治疗综合结果量表肾脏评分平均为19.6±9.8）。59%的患者目前正在接受透析。转诊的主要原因是症状管理（37%）。虽然该队列中的生活质量和健康状况差异很大，但总体而言，这些参数远低于人群标准。
结果表明，被转诊至KSCp的患者是那些强烈需要以患者为中心的综合护理模式的人。将重点转向协调的多学科护理而非分散的专科领域，似乎是解决临终护理中具有挑战性的临床问题的关键。
