Clemens Kristin K, Getchell Leah, Robinson Tracy, Ryan Bridget L, O'Donnell Jim, Reichert Sonja M
Division of Endocrinology and Metabolism, Department of Medicine (Clemens), Department of Epidemiology and Biostatistics (Clemens, Ryan) and Centre for Studies in Family Medicine (Ryan, Reichert), Western University; St. Joseph's Health Care London (Clemens), London, Ont.; ICES (Clemens, Getchell), London, Ont.; Children's Hospital (Robinson), London Health Sciences Centre; patient partner (O'Donnell), St. Joseph's Health Care London, London, Ont.
CMAJ Open. 2019 Apr 23;7(2):E258-E263. doi: 10.9778/cmajo.20180177. Print 2019 Apr-Jun.
Patients with diabetes and advanced chronic kidney disease face a high health care burden. As part of a patient-oriented research initiative to identify ways to better support patients' diabetes care, we explored their health care experience and solutions for patient-centred diabetes care.
We engaged 2 patients with advanced kidney disease and diabetes to join our multidisciplinary team as full research partners. They were involved in our design and conduct of the study, the analysis of the results and knowledge translation. We conducted qualitative interviews (1:1 semistructured interviews and focus groups) with patients with a history of both diabetes (type 1 or 2) and advanced kidney disease including those using dialysis. We identified overarching themes using individual and team analysis and conducted interviews until data saturation was reached.
Twelve participants were interviewed between October 2017 and February 2018. Six people were interviewed in 2 separate focus groups (consisting of 4 and 2 participants) and 6 participated in 1:1 interviews with our team. Participants described being burdened by medical appointments, strict conflicting diets, costly diabetes therapies and fragmented, siloed health care. They indicated that self-management support, education and coordinated diabetes care might better support their diabetes care.
Patients with complex medical comorbidities face many challenges traversing a health care system organized around single diseases. Researchers and policy-makers should study and develop patient-centred diabetes care strategies to better support these high-risk patients.
糖尿病和晚期慢性肾病患者面临着沉重的医疗负担。作为一项以患者为导向的研究计划的一部分，旨在确定更好地支持患者糖尿病护理的方法，我们探索了他们的医疗体验以及以患者为中心的糖尿病护理解决方案。
我们邀请了2名患有晚期肾病和糖尿病的患者作为正式研究伙伴加入我们的多学科团队。他们参与了我们的研究设计与实施、结果分析以及知识转化。我们对有1型或2型糖尿病病史且患有晚期肾病（包括接受透析治疗的患者）进行了定性访谈（一对一的半结构化访谈和焦点小组访谈）。我们通过个人和团队分析确定了总体主题，并进行访谈直至达到数据饱和。
在2017年10月至2018年2月期间，我们对12名参与者进行了访谈。在2个单独的焦点小组中对6人进行了访谈（一个焦点小组有4名参与者，另一个有2名参与者），另外6人接受了我们团队的一对一访谈。参与者表示，医疗预约、严格且相互冲突的饮食、昂贵的糖尿病治疗以及碎片化、各自为政的医疗服务给他们带来了负担。他们指出，自我管理支持、教育以及协调一致的糖尿病护理可能会更好地支持他们的糖尿病护理。
患有复杂合并症的患者在围绕单一疾病组织的医疗体系中面临诸多挑战。研究人员和政策制定者应研究并制定以患者为中心的糖尿病护理策略，以更好地支持这些高危患者。
