Kidney Research Institute, University of Washington, Seattle, Washington.
Division of Nephrology, Department of Medicine, Harborview Medical Center, University of Washington, Seattle, Washington.
Clin J Am Soc Nephrol. 2021 Apr 7;16(4):588-598. doi: 10.2215/CJN.15570920. Epub 2021 Mar 30.
The population of patients with kidney failure in the United States using home dialysis modalities is growing rapidly. Unlike for in-center hemodialysis, there is no patient-reported experience measure for assessment of patient experience of care for peritoneal dialysis or home hemodialysis. We sought to develop and establish content validity of a patient-reported experience measure for patients undergoing home dialysis using a mixed methods multiple stakeholder approach.
DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: We conducted a structured literature review, followed by concept elicitation focus groups and interviews among 65 participants, including 21 patients on home dialysis, 33 home dialysis nurses, three patient care partners, and eight nephrologists. We generated a list of candidate items for possible measure inclusion and conducted a national prioritization exercise among 91 patients on home dialysis and 39 providers using a web-based platform. We drafted the Home Dialysis Care Experience instrument and conducted cognitive debriefing interviews to evaluate item interpretability, order, and structure. We iteratively refined the measure on the basis of interview findings.
The literature review and concept elicitation phases supported 15 domains of home dialysis care experience in six areas: communication and education of patients, concern and helpfulness of the care team, proficiency of the care team, patient-centered care, care coordination, and amenities and environment. Focus groups results showed that domains of highest importance for measure inclusion were patient education and communication, care coordination, and personalization of care. Prioritization exercise results confirmed focus group findings. Cognitive debriefing indicated that the final measure was easily understood and supported content validity.
The Home Dialysis Care Experience instrument is a 26-item patient-reported experience measure for use in peritoneal dialysis and home hemodialysis. The Home Dialysis Care Experience instrument represents the first rigorously developed and content-valid English-language instrument for assessment of patient-reported experience of care in home dialysis.
美国接受家庭透析模式的肾衰竭患者人数迅速增长。与中心血液透析不同，腹膜透析或家庭血液透析患者的护理体验评估没有患者报告的体验测量。我们采用混合方法多利益相关者方法，旨在开发和建立用于接受家庭透析患者的患者报告体验测量工具，并确立其内容效度。
设计、设置、参与者和测量：我们进行了系统文献回顾，随后进行了概念提取焦点小组和访谈，共涉及 65 名参与者，包括 21 名家庭透析患者、33 名家庭透析护士、3 名患者护理伙伴和 8 名肾病医生。我们生成了一份可能包含的候选项目清单，并使用基于网络的平台对 91 名家庭透析患者和 39 名提供者进行了全国优先排序。我们起草了家庭透析护理体验量表，并进行了认知性访谈，以评估项目的可理解性、顺序和结构。我们根据访谈结果对该量表进行了迭代完善。
文献回顾和概念提取阶段支持家庭透析护理体验的 15 个领域，分为六个方面：患者的沟通和教育、护理团队的关注和帮助、护理团队的熟练程度、以患者为中心的护理、护理协调以及便利设施和环境。焦点小组的结果表明，纳入量表的最重要领域是患者教育和沟通、护理协调以及护理的个性化。优先排序的结果证实了焦点小组的结果。认知性访谈表明，最终的量表易于理解，并支持内容效度。
家庭透析护理体验量表是一种用于腹膜透析和家庭血液透析的 26 项患者报告体验测量工具。家庭透析护理体验量表是第一个经过严格开发和内容验证的英语语言工具，用于评估家庭透析患者的护理体验。
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