Abstract：
Patients with chronic kidney disease (CKD) are at an increased risk for premature death, cardiovascular disease, and burdensome symptoms that impair quality of life. We aimed to identify patient and caregiver priorities for outcomes in CKD.
Focus groups with nominal group technique.
Adult patients with CKD (all stages) and caregivers in the United States, Australia, and United Kingdom.
Participants identified, ranked, and discussed outcomes that were important during the stages of CKD before kidney replacement therapy. For each outcome, we calculated a mean importance score (scale, 0-1). Qualitative data were analyzed using thematic analysis.
67 (54 patients, 13 caregivers) participated in 10 groups and identified 36 outcomes. The 5 top-ranked outcomes for patients were kidney function (importance score, 0.42), end-stage kidney disease (0.29), fatigue (0.26), mortality (0.25), and life participation (0.20); and for caregivers, the top 5 outcomes were life participation (importance score, 0.38), kidney function (0.37), mortality (0.23), fatigue (0.21), and anxiety (0.20). Blood pressure, cognition, and depression were consistently ranked in the top 10 outcomes across role (patient/caregiver), country, and treatment stage. Five themes were identified: re-evaluating and reframing life, intensified kidney consciousness, battling unrelenting and debilitating burdens, dreading upheaval and constraints, and taboo and unspoken concerns.
Only English-speaking participants were included.
Patients and caregivers gave highest priority to kidney function, mortality, fatigue, life participation, anxiety, and depression. Consistent reporting of these outcomes in research may inform shared decision making based on patient and caregiver priorities in CKD.
Focus groups with nominal group technique.
Adult patients with CKD (all stages) and caregivers in the United States, Australia, and United Kingdom.
Participants identified, ranked, and discussed outcomes that were important during the stages of CKD before kidney replacement therapy. For each outcome, we calculated a mean importance score (scale, 0-1). Qualitative data were analyzed using thematic analysis.
67 (54 patients, 13 caregivers) participated in 10 groups and identified 36 outcomes. The 5 top-ranked outcomes for patients were kidney function (importance score, 0.42), end-stage kidney disease (0.29), fatigue (0.26), mortality (0.25), and life participation (0.20); and for caregivers, the top 5 outcomes were life participation (importance score, 0.38), kidney function (0.37), mortality (0.23), fatigue (0.21), and anxiety (0.20). Blood pressure, cognition, and depression were consistently ranked in the top 10 outcomes across role (patient/caregiver), country, and treatment stage. Five themes were identified: re-evaluating and reframing life, intensified kidney consciousness, battling unrelenting and debilitating burdens, dreading upheaval and constraints, and taboo and unspoken concerns.
Only English-speaking participants were included.
Patients and caregivers gave highest priority to kidney function, mortality, fatigue, life participation, anxiety, and depression. Consistent reporting of these outcomes in research may inform shared decision making based on patient and caregiver priorities in CKD.
摘要：
慢性肾脏病（CKD）患者过早死亡的风险增加，心血管疾病,以及严重影响生活质量的症状。我们旨在确定患者和护理人员对CKD结局的优先考虑。
采用名义分组技术的焦点分组。
在美国患有CKD（所有阶段）的成年患者和护理人员，澳大利亚,和英国。
确定的参与者，排名,并讨论了肾脏替代治疗前CKD阶段的重要结局。对于每个结果，我们计算了一个平均重要性得分(量表，0-1）。使用主题分析对定性数据进行分析。
67（54名患者，13名护理人员）参加了10组，并确定了36个结果。患者的5个最高结局是肾功能(重要性评分，0.42),终末期肾病（0.29），疲劳(0.26)，死亡率（0.25），和生活参与(0.20)；对于护理人员，前5名结果是生活参与(重要性得分，0.38),肾功能（0.37），死亡率（0.23），疲劳(0.21)，和焦虑（0.20）。血压,认知，和抑郁症在不同角色(患者/护理人员)的前10名结果中始终排名，国家,和治疗阶段。确定了五个主题:重新评估和重构生活，强化肾脏意识，与无情和令人衰弱的负担作斗争，害怕动荡和限制，禁忌和不言而喻的担忧。
只包括讲英语的参与者。
患者和护理人员最优先考虑的是肾功能，死亡率,疲劳,生活参与,焦虑,和抑郁症。研究中这些结果的一致报告可能会根据CKD中患者和护理人员的优先级为共同决策提供信息。
采用名义分组技术的焦点分组。
在美国患有CKD（所有阶段）的成年患者和护理人员，澳大利亚,和英国。
确定的参与者，排名,并讨论了肾脏替代治疗前CKD阶段的重要结局。对于每个结果，我们计算了一个平均重要性得分(量表，0-1）。使用主题分析对定性数据进行分析。
67（54名患者，13名护理人员）参加了10组，并确定了36个结果。患者的5个最高结局是肾功能(重要性评分，0.42),终末期肾病（0.29），疲劳(0.26)，死亡率（0.25），和生活参与(0.20)；对于护理人员，前5名结果是生活参与(重要性得分，0.38),肾功能（0.37），死亡率（0.23），疲劳(0.21)，和焦虑（0.20）。血压,认知，和抑郁症在不同角色(患者/护理人员)的前10名结果中始终排名，国家,和治疗阶段。确定了五个主题:重新评估和重构生活，强化肾脏意识，与无情和令人衰弱的负担作斗争，害怕动荡和限制，禁忌和不言而喻的担忧。
只包括讲英语的参与者。
患者和护理人员最优先考虑的是肾功能，死亡率,疲劳,生活参与,焦虑,和抑郁症。研究中这些结果的一致报告可能会根据CKD中患者和护理人员的优先级为共同决策提供信息。
