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Patient and caregiver perspectives on blood pressure in children with chronic kidney disease

机译:患者和照料者对慢性肾病患儿血压的看法

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Background More than 50 of children with chronic kidney disease (CKD) have uncontrolled hypertension, increasing their long-term risk of cardiovascular disease and progression to kidney failure. Children receiving medications or dialysis may also experience acute blood pressure fluctuations accompanied by debilitating symptoms. We aimed to describe the perspectives of children with CKD and their parental caregivers on blood pressure to inform patient-centered care. Methods Secondary thematic analysis was conducted on qualitative data from the Standardized Outcomes in Nephrology-Children and Adolescents initiative, encompassing 16 focus groups, an international Delphi survey and two consensus workshops. We analyzed responses from children with CKD (ages 8-21 years) and caregivers (of children ages 0-21 years) pertaining to blood pressure. Results Overall, 120 patients and 250 caregivers from 22 countries participated. We identified five themes: invisibility and normalization (reassured by apparent normotension, absence of symptoms and expected links with CKD), confused by ambiguity (hypertension indistinguishable from cardiovascular disease, questioning the need for prophylactic intervention, frustrated by inconsistent messages and struggling with technical skills in measurement), enabling monitoring and maintaining health (gaging well-being and preventing vascular complications), debilitating and constraining daily living (provoking anxiety and agitation, helpless and powerless and limiting life activities) and burden of medications (overwhelmed by the quantity of tablets and distress from unexpected side effects). Conclusions For children with CKD and their caregivers, blood pressure was an important heath indicator, but uncertainty around its implications and treatment hampered management. Providing educational resources to track blood pressure and minimizing symptoms and treatment burden may improve outcomes in children with CKD.
机译:背景 超过 50% 的慢性肾脏病 (CKD) 患儿患有未控制的高血压,增加了他们患心血管疾病和进展为肾衰竭的长期风险。接受药物治疗或透析的儿童也可能会出现急性血压波动,并伴有使人衰弱的症状。我们旨在描述CKD患儿及其父母照顾者对血压的看法,以便为以患者为中心的护理提供信息。方法 对肾脏病学-儿童和青少年标准化结果倡议的定性数据进行二次主题分析,包括 16 个焦点小组、一项国际德尔菲调查和两个共识研讨会。我们分析了CKD患儿(8-21岁)和照料者(0-21岁儿童)对血压的反应。结果 共有来自22个国家的120名患者和250名护理人员参与。我们确定了五个主题:隐形和正常化(通过明显的正常血压、无症状和预期的与CKD的联系来保证)、因模棱两可而感到困惑(高血压与心血管疾病无法区分、质疑预防性干预的必要性、因信息不一致而感到沮丧以及在测量技术技能方面遇到困难)、能够监测和维持健康(测量健康和预防血管并发症)、衰弱和限制日常生活(引起焦虑和激动,无助和无能为力,限制生活活动)和药物负担(被药片的数量和意外副作用带来的痛苦所淹没)。结论 对于CKD患儿及其照料者来说,血压是一个重要的健康指标,但其意义和治疗的不确定性阻碍了管理。提供教育资源来跟踪血压并尽量减少症状和治疗负担可能会改善 CKD 患儿的预后。

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