Clinical care gaps and solutions in diabetes and advanced chronic kidney disease: a patient-oriented qualitative research study

Abstract

Plain language summary: Diabetes care can benefit people with both diabetes and advanced kidney disease, but getting this care can be an ordeal. In this study, we explored the health care experiences of these patients and reviewed how to better support their diabetes care. We partnered with 2 patients with advanced kidney disease and diabetes by inviting them to join our study team as full research partners. They were involved in all aspects of this study from its beginnings. We then interviewed 12 patients with diabetes and advanced kidney disease including those using dialysis. Patients reported being burdened by too many medical appointments, noted communication issues between their care providers and felt each of their providers addressed only 1 aspect of their disease. They faced challenges caring for their diabetes and found therapies difficult to afford. Patients suggested that coordinated diabetes care, self-management support and diabetes education might help them manage their diabetes. In this project, we learned of many challenges that patients with diabetes and kidney disease face in our health care system. Researchers and policy-makers should consider patient suggestions when developing new diabetes care strategies. W ith better treatments and improved survival, patients with diabetes often live longer than in the past, but with other medical conditions. 1 A common comorbidity, affecting 25%-50% of patients with diabetes, is chronic kidney disease. 2 Patients with diabetes and kidney disease are at high risk of diabetes-related complications, 3-5 are often socioeconomically

Exploring health literacy in patients with chronic kidney disease: a qualitative study

“…Fragmentation and inconsistency in health recommendations and the challenges of deciding which healthcare provider to contact with different health issues have also been reported to be challenges by earlier qualitative research with patients with CKD [44,45]. In a recently published study, patients' suggestions to minimize the consequences of fragmentation included the use of coordinated care, patient education, and self-management support [44]. However, our results show that the desire to be educated varies and that some patients prefer not to know everything about their disease.…”

“…Compared with coherent care, fragmented care in terms of seeing different healthcare providers with different specialties is associated with higher use of emergency departments, rates of hospitalization, disease progression, and healthcare costs [ 41 – 43 ]. Fragmentation and inconsistency in health recommendations and the challenges of deciding which healthcare provider to contact with different health issues have also been reported to be challenges by earlier qualitative research with patients with CKD [ 44 , 45 ]. In a recently published study, patients’ suggestions to minimize the consequences of fragmentation included the use of coordinated care, patient education, and self-management support [ 44 ].…”

Cultivating Innovative Pragmatic Cluster-Randomized Registry Trials Embedded in Hemodialysis Care: Workshop Proceedings From 2018

“…The trial idea was informed by a qualitative patient-oriented research study, where persons with diabetes and advanced kidney disease identified several challenges with their health care. 30…”

“…This care burden can make it financially and logistically impractical for persons with diabetes and chronic kidney disease to meet all their needs, which lead to gaps in their health care and decreased overall quality of care. 30…”

How point‐of‐care HbA1c testing changes the behaviour of people with diabetes and clinicians – a qualitative study

“…Diabetes is a growing healthcare burden with implications for healthcare budgets globally , and it imposes a major personal burden on the lives of people managing their condition and attending clinic appointments . Monitoring diabetes control involves measuring HbA 1c and management with glucose‐lowering medications to reduce the risk of developing complications .…”