Abstract
Background:
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.
Methods:
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.
Results:
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.
Interpretation:
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.
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.
With 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 disadvantaged and have lower quality of life.6 They can benefit from glycemic management, cardiovascular protection and screening for diabetes complications,7–9 but this means attending numerous medical appointments.10 Before developing patient-centred strategies to support these people, a necessary first step is to understand their health care struggles and needs.11
Patient-oriented research focuses on priorities and outcomes relevant to patients.12 In this study, we sought to answer 2 questions: (1) What is the burden of illness and the health care experience of those living with advanced kidney disease and diabetes? and (2) What are some patient solutions for supportive diabetes care? Herein, we report their health care experiences and proposed solutions.
Methods
Design and setting
We used a descriptive qualitative approach.13 We conducted focus groups and 1:1 semistructured interviews with patients from 2 academic centres (London Health Sciences Centre and St. Joseph’s Health Care London) in London, Ontario, Canada. We report this study using the Guidance for Reporting Involvement of Patients and Public,14 the Patient Engagement in Research Description Framework13 and the Consolidated Criteria for Reporting Qualitative Studies (COREQ) checklists.15
Recruitment
English-speaking adults 18 years and older with type 1 or type 2 diabetes and advanced chronic kidney disease (self-reported disease approaching the need for dialysis, chronic peritoneal or hemodialysis, kidney transplant recipient within the previous 2 yr) were eligible for inclusion. We posted recruitment materials in clinical areas and dialysis units. We also distributed the materials to diabetes and renal care providers and asked them to approach patients who might be eligible. If a patient provided consent to contact, team members (L.G., K.C., S.R.) recruited participants by telephone. Our team members also recruited participants from outpatient clinics and hemodialysis units. We purposefully sampled to encourage diversity in age, sex, ethnicity and dialysis status.
Data collection
Between October 2017 and March 2018, we conducted interview sessions moderated by qualitative researchers, physicians and our patient partner (S.R, K.C., L.G., J.O.). Our physician investigators (K.C., S.R.) had no therapeutic relationship with the participants they interviewed.
We initially planned to conduct 2-hour, in-person focus groups. Because of scheduling difficulties, we also conducted 1:1 semistructured interviews in person or by telephone. All sessions were guided by a semistructured interview guide, developed from a literature review (Appendix 1, available at www.cmajopen.ca/content/7/2/E258/suppl/DC1).
Interviews were audio-recorded, and the recordings were transcribed verbatim by an independent transcription service. Each interviewer then reviewed the entire transcript of each interview in which they had participated to ensure accuracy. Field notes captured interviewer perceptions and nuances of communications. Transcripts were deidentified.
Patient engagement
To ensure this study was centred around patients, we recruited 2 people (1 with advanced kidney disease [J.O.] and 1 using hemodialysis [P.D.]) to join our team as collaborators at the execution phase. They were recruited through recruitment posters and health care professionals. Interested patient partners were put in contact with our advisor-liaison (L.G.). She had them submit a curriculum vitae and then met with them in person to discuss the details of the project to make sure that it was a good fit. Our partners had no therapeutic relationship with the physician investigators. Through inperson meetings, phone calls and emails, they helped develop our protocol (J.O., P.D.) and aided with recruitment materials, participant interviews, analysis, manuscript preparation and knowledge translation (J.O.).16
Analysis
We completed thematic data analysis simultaneously and iteratively with data collection.17 We independently reviewed transcripts noting key themes, and as a group we built a coding template (S.R., K.C., J.O., B.R., T.R., L.G.). With subsequent transcripts, we modified our template and identified exemplar quotes. We ceased data collection when all agreed that data saturation had been achieved (i.e., no new themes were emerging). We used Microsoft Word to maintain our template. Two team members (T.R. and K.C.) then collapsed the codes into higher order themes and identified relationships between them. We (S.R., K.C., J.O., B.R., T.R., L.G.) then finalized the themes and relationships.
A patient (J.O.), providers (K.C., S.R.) and researchers (B.R., T.R., L.G.) conducted the analysis. For confirmability, we used independent and team analysis, verbatim transcripts and an audit of all analyses. For dependability, we followed the COREQ checklist to ensure our methods were systematic, articulated and replicable.
Ethics aproval
This study was approved by the Health Sciences Research Ethics Board at Western University, London, Ont. (REB no. 109561). Participants provided written and informed consent.
Results
Participants
We approached 37 eligible participants. Seven declined (lived remotely, subjectively unwell, uninterested). Eighteen expressed interest but did not consent (intercurrent illness, scheduling difficulty).
We conducted 2 focus groups of 4 and 2 participants that were 2 hours in duration (facilitated by S.R. on Nov. 22, 2017, at the London Health Sciences Centre and on Dec. 5, 2017, at St. Joseph’s Health Care London). We conducted 6 semistructured interviews that were 1 hour in duration, either in person or by phone: in-person interviews were conducted at the London Health Sciences Centre by L.G. on Jan. 12, 2018, and by K.C. on Feb. 2, 2018, and telephone interviews were conducted by K.C. on Feb. 22 (2 interviews), Feb. 23 and Mar. 2, 2018, after which we reached data saturation. The mean age of the participants was 60 (range 36–78) years, 41.6% were women, 83.3% were white and 58.3% were using dialysis (Table 1).
Table 1:
Participant characteristics (n = 12)
| Characteristic | No. (%)* |
|---|---|
| Age, mean (range), yr | 60.2 (36–78) |
| Female | 5 (41.6) |
| Ethnicity | |
| White | 10 (83.3) |
| Aboriginal | 1 (8.3) |
| Mediterranean | 1 (8.3) |
| Type 2 diabetes | 10 (83.3) |
| Duration of diabetes, mean (range), yr | 19.3 (5–30) |
| Current dialysis | 7 (58.3) |
| Hemodialysis | 5 (71.4) |
| Peritoneal dialysis | 2 (28.6) |
| Duration of dialysis, mean (range), yr | 2.5 (0.1–5.5) |
| Transplant recipient | 3 (25) |
Unless otherwise indicated.
Findings
We report participants’ comments on 2 topics: care challenges they faced and their solutions to improve care. Exemplar quotes are identified in Tables 2 and 3 by interview type (FG, focus group; INT, interview), type of diabetes (e.g., T1, type 1 diabetes), sex (e.g., F, female) and stage of kidney disease (advanced, dialysis).
Table 2:
Health care challenges described by study participants
| Theme | Quotations |
|---|---|
| Multiple medical appointments and care providers |
|
| Not enough time with health professionals |
|
| Care fragmentation and silos |
|
| Communication gaps |
|
| Not enough education |
|
| Cost of diabetes management |
|
| Access to technology |
|
| Diets |
|
Table 3:
Possible solutions suggested by study participants
| Theme | Quotations |
|---|---|
| Coordinated care |
|
| Self-management support |
|
| Education |
|
Care challenges
Participants described several health care challenges. We organized them into 8 themes: multiple medical appointments and care providers; not enough time with health professionals; care fragmentation and silos; communication gaps; not enough education; cost of diabetes management; access to technology; and diets (Table 2).
Participants reported that they often found it difficult to attend multiple medical appointments. This became especially challenging when they were juggling dialysis and their home life. Appointments often conflicted.
They also felt that their medical appointments were often too short and that providers did not have time to address their complex needs.
With many appointments, participants experienced care fragmentation and silos. Specialists focused on 1 of their diseases and did not have time to address others. There was complete care fragmentation when participants moved or when their kidney disease progressed, requiring new care teams. With each transition, they had to recount their medical history and build new provider relationships. For some, this felt like abandonment. Participants noted silos between providers. Management plans were not well summarized, documentation was not shared and notes were not accessed. They also felt like the “go-between” between providers. They kept records about their health, so they could share this information, and they felt responsible for care coordination. In addition, participants were frustrated by frequent, duplicated laboratory tests that arose from care silos.
Participants noted communication gaps with providers. In some instances, they felt their disease perspectives were not heard.
Some felt ill informed about diabetes complications and the complexities of their disease.
There was a cost burden associated with self-managing diabetes. Supplies were often not covered, and there were out-of-pocket expenses.
Participants recognized the availability of technology to support diabetes. They often could not afford technologies and found them difficult to use.
Dietary challenges were commonly mentioned. Participants found diabetes and kidney diets conflicting. Diets changed as their kidney disease progressed. There were no experts knowledgeable in both kidney and diabetes diets.
Possible solutions
Recognizing the gaps in their health care, participants spoke about strategies that might better support their diabetes. We grouped their suggestions into 3 themes: coordinated care; self-management support; and education (Table 3).
Participants expressed a desire for coordinated care, even care provided at a single appointment. We asked participants about the possibility of providing diabetes care in the dialysis unit. They expressed openness to education and counselling, foot screening and glycemic management.
Participants valued self-management support. Some used applications to track blood glucose and dialysis parameters and wondered if this would be helpful to others. Others suggested that diabetes flow sheets might keep self-management on track.
Finally, participants valued opportunities for education. They wanted to learn about their diseases, diets and complications. They suggested websites, libraries and waiting room resources.
Interpretation
Participants in our study described several health care challenges. They faced conflicting and restrictive diets and communication gaps with providers. Their self-management was hindered by the cost of diabetes supplies and technology. With their multiple medical conditions they had frequent, short and fragmented medical appointments, which is consistent with what has been reported at a population level in Canada.10 Given their health care experience, participants suggested that coordinated care, self-management support and education might be helpful strategies to support their diabetes in a patient-centred manner.
There has been little research investigating the challenges of living with both diabetes and advanced kidney disease from the patient perspective. In Australian and American studies, patients expressed frustration with short appointments, duplicated tests and conflicting and segregated health care.18,19 They felt responsible for coordinating their care.18
Where care solutions have been studied, consistent with our research, self-management support was suggested to empower patients with complex disease.19 Targeted, culturally relevant education was also suggested to inform patients about their disease and treatments.19–21 Multidisciplinary clinics could promote communication between providers, reduce silos and make appointments more convenient.19 Patients also suggested that communication be mandatory between providers and that parking costs be covered for appointments.19
We followed a strong qualitative approach and interviewed patients who had advanced kidney disease through dialysis. Where most studies of patients with advanced kidney disease do not address patient priorities,12 we involved patients from the outset of our study to ensure that our work was centred around them.
Limitations
One of our patient partners (P.D.) passed away early in the study, when we were writing our protocol, and we lost the helpful partnership of a person using dialysis. Our study was small and recruited participants from 2 academic centres, so our findings may not resonate with teams in other jurisdictions. We cannot ensure that our findings represent a diversity of opinion because of the small number of participants. If we had included people who did not speak English they might have mentioned other barriers to care. As organizing focus groups was challenging, we changed to 1:1 interviews midway through the study. However, in reviewing transcripts we did not notice any substantive differences in how participants responded.
Lessons learned from patient involvement
Including patients as partners brought challenges but also immensely benefited our study and team members.
Because of the novelty of this research, there were new processes to explore (e.g., the ethics associated with including patients as partners in research). To facilitate learning, L.G. held a patient-oriented research workshop with investigators including patient partners. Occasionally, we had different timeline expectations. Investigators needed to follow several steps to conduct this study (e.g., funding, ethics approval), but patient partners wanted the research to be completed quickly and lead to better care immediately.22
In terms of benefits, as an interviewer, J.O. naturally connected with participants, resulting in candid conversations. He brought his lived experience to the analysis of the transcripts and interpreted nuances and themes that the other research team members did not capture. He encouraged adherence to timelines and suggested knowledge translation activities (e.g., an educational video for those newly diagnosed with diabetes). Our team members were also able to share and reflect upon the biases they had about each other. Physicians gained a clearer understanding of the burden of multimorbidity on patients, and our patient partner learned that investigators have a sincere interest in doing more to support patient care.
Conclusion
Living with diabetes and advanced kidney disease is difficult and patients face several challenges including gaps in their health care. Coordinated care, patient education and self-management support are patient-centred strategies to explore, develop and study.
Supplementary Material
Acknowledgement
The authors thank Emma Hahn for providing administrative assistance for this study.
Footnotes
Competing interests: Kristin Clemens received a Diabetes Canada Junior Investigator award in 2017, funded by AstraZeneca. She has attended conferences sponsored by Merck, unrelated to this work. Sonja Reichert has received fees for advisory board work from Sanofi, Novo Nordisk, AstraZeneca and Servier, unrelated to this work. She has received personal fees for presentations from Sanofi, Novo Nordisk, AstraZeneca, Boehringer Ingelheim, Janssen, Eli Lilly, Merck and Abbott, unrelated to this work. Although no personal fees were obtained, she has acted as a subinvestigator on clinical trials for the following companies: Sanofi, Novo Nordisk, AstraZeneca, Boehringer Ingelheim, unrelated to this work. No other competing interests were declared.
This article has been peer reviewed.
Contributors: Kristin Clemens, Leah Getchell, Jim O’Donnell and Sonja Reichert contributed to the conception and design of the study and the acquisition of data. All authors contributed to the analysis of the results. Kristin Clemens, Leah Getchell, Tracy Robinson, Bridget Ryan and Sonja Reichert contributed to the interpretation of the results. Kristin Clemens drafted the manuscript and all other authors revised it for important intellectual content. All authors gave final approval to the version to be published and agree to act as guarantors of the work.
Funding: This study was supported by a Canadian Institutes of Health Research (CIHR)/Strategy for Patient-Oriented Research (SPOR) Patient-Oriented Research Collaboration Grant as well as a CIHR/SPOR Innovative Clinical Trial Multi-Year Grant. Two of the authors are affiliated with ICES, which is funded by the Ontario Ministry of Health and Long-Term Care (MOHLTC). Core funding for ICES Western is provided by the Academic Medical Organization of Southwestern Ontario (AMOSO), the Schulich School of Medicine and Dentistry (SSMD), Western University and the Lawson Health Research Institute (LHRI).
Disclaimer: This study was supported by ICES, which is funded by an annual grant from the Ontario MOHLTC. The opinions, results and conclusions reported in this article are those of the authors and are independent from the funding sources. No endorsement by ICES, AMOSO, SSMD, LHRI, CIHR, SPOR or the Ontario MOHLTC is intended or should be inferred.
Supplemental information: For reviewer comments and the original submission of this manuscript, please see www.cmajopen.ca/content/7/2/E258/suppl/DC1.
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