Boehmer Kasey R, Pine Kathleen H, Whitman Samantha, Organick Paige, Thota Anjali, Espinoza Suarez Nataly R, LaVecchia Christina M, Lee Alexander, Behnken Emma, Thorsteinsdottir Bjorg, Pawar Aditya S, Beck Annika, Lorenz Elizabeth C, Albright Robert C
Knoweldge and Evaluation Research (KER) Unit, Mayo Clinic, Rochester, Minnesota, United States of America.
College of Health Solutions, Arizona State University, Phoenix, Arizona, United States of America.
PLoS One. 2021 Dec 28;16(12):e0260914. doi: 10.1371/journal.pone.0260914. eCollection 2021.
Approximately 750,000 people in the U.S. live with end-stage kidney disease (ESKD); the majority receive dialysis. Despite the importance of adherence to dialysis, it remains suboptimal, and one contributor may be patients' insufficient capacity to cope with their treatment and illness burden. However, it is unclear what, if any, differences exist between patients reporting high versus low treatment and illness burden.
We sought to understand these differences using a mixed methods, explanatory sequential design. We enrolled adult patients receiving dialysis, including in-center hemodialysis, home hemodialysis, and peritoneal dialysis. Descriptive patient characteristics were collected. Participants' treatment and illness burden was measured using the Illness Intrusiveness Scale (IIS). Participants scoring in the highest quartile were defined as having high burden, and participants scoring in the lowest quartile as having low burden. Participants in both quartiles were invited to participate in interviews and observations.
Quantitatively, participants in the high burden group were significantly younger (mean = 48.4 years vs. 68.6 years respectively, p = <0.001). No other quantitative differences were observed. Qualitatively, we found differences in patient self-management practices, such as the high burden group having difficulty establishing a new rhythm of life to cope with dialysis, greater disruption in social roles and self-perception, fewer appraisal focused coping strategies, more difficulty maintaining social networks, and more negatively portrayed experiences early in their dialysis journey.
Patients on dialysis reporting the greatest illness and treatment burden have difficulties that their low-burden counterparts do not report, which may be amenable to intervention.
在美国，约有75万人患有终末期肾病（ESKD）；大多数患者接受透析治疗。尽管坚持透析治疗很重要，但目前仍未达到最佳状态，其中一个原因可能是患者应对治疗和疾病负担的能力不足。然而，目前尚不清楚报告高治疗和疾病负担的患者与低治疗和疾病负担的患者之间是否存在差异。
我们试图采用混合方法、解释性序列设计来了解这些差异。我们招募了接受透析的成年患者，包括中心血液透析、家庭血液透析和腹膜透析患者。收集了患者的描述性特征。使用疾病侵扰量表（IIS）测量参与者的治疗和疾病负担。得分处于最高四分位数的参与者被定义为高负担，得分处于最低四分位数的参与者被定义为低负担。邀请两个四分位数的参与者参加访谈和观察。
在定量方面，高负担组的参与者明显更年轻（平均年龄分别为48.4岁和68.6岁，p = <0.001）。未观察到其他定量差异。在定性方面，我们发现患者自我管理实践存在差异，例如高负担组在建立新的生活节奏以应对透析方面存在困难，社会角色和自我认知受到更大干扰，评估性应对策略较少，维持社交网络更困难，并且在透析初期的经历描述更负面。
报告疾病和治疗负担最重的透析患者存在低负担患者未报告的困难，这些困难可能适合进行干预。
