Welch Center for Prevention, Epidemiology and Clinical Research, Johns Hopkins Medical Institutions, Baltimore, MD 21205, USA.
BMC Nephrol. 2013 Jan 14;14:9. doi: 10.1186/1471-2369-14-9.
Little is known regarding the types of information African American and non-African American patients with chronic kidney disease (CKD) and their families need to inform renal replacement therapy (RRT) decisions.
In 20 structured group interviews, we elicited views of African American and non-African American patients with CKD and their families about factors that should be addressed in educational materials informing patients' RRT selection decisions. We asked participants to select factors from a list and obtained their open-ended feedback.
Ten groups of patients (5 African American, 5 non-African American; total 68 individuals) and ten groups of family members (5 African American, 5 non-African American; total 62 individuals) participated. Patients and families had a range (none to extensive) of experiences with various RRTs. Patients identified morbidity or mortality, autonomy, treatment delivery, and symptoms as important factors to address. Family members identified similar factors but also cited the effects of RRT decisions on patients' psychological well-being and finances. Views of African American and non-African American participants were largely similar.
Educational resources addressing the influence of RRT selection on patients' morbidity and mortality, autonomy, treatment delivery, and symptoms could help patients and their families select RRT options closely aligned with their values. Including information about the influence of RRT selection on patients' personal relationships and finances could enhance resources' cultural relevance for African Americans.
对于非裔美国人和非裔美国慢性肾脏病 (CKD) 患者及其家属在告知肾脏替代治疗 (RRT) 决策时需要了解哪些信息,知之甚少。
在 20 次结构化小组访谈中,我们了解了 CKD 患者及其家属对告知患者 RRT 选择决策的教育材料中应涉及的因素的看法。我们要求参与者从清单中选择因素,并获得他们的开放式反馈。
共有 10 组患者(5 名非裔美国人,5 名非裔美国人;共 68 人)和 10 组家属(5 名非裔美国人,5 名非裔美国人;共 62 人)参与。患者和家属在各种 RRT 方面的经验各不相同(从没有到广泛)。患者确定了发病率或死亡率、自主性、治疗提供和症状作为需要解决的重要因素。家属确定了类似的因素,但也提到了 RRT 决策对患者心理幸福感和财务状况的影响。非裔美国人和非裔美国参与者的观点基本相似。
解决 RRT 选择对患者发病率和死亡率、自主性、治疗提供和症状影响的教育资源可以帮助患者及其家属选择与他们的价值观密切相关的 RRT 方案。包括 RRT 选择对患者人际关系和财务状况影响的信息,可以增强资源对非裔美国人的文化相关性。