Continuity of Care Surrounding Emergency Department Encounters for People with Kidney Failure in Alberta, Canada

Visual Abstract

Abstract

Key Points

• People with kidney failure perceive disruptions in continuity of care before, during, and after their emergency care encounters.

• Patients report taking steps themselves to bridge gaps in continuity and ensure consistent informational flow across care teams.

• Strategies tailored to the unique emergency care needs of people with kidney failure may help strengthen continuity of care in this context.

Background

People with kidney failure have complex care needs and frequently access care using the emergency department (ED). Little is known about how continuity of care (CoC) relates to ED care seeking for people with kidney failure. To understand the experiences of CoC among adults with kidney failure in relation to their recent ED encounter.

Methods

Using a qualitative descriptive methodology, we purposively sampled adults with kidney failure (defined as eGFR <15 ml/min per 1.73 m² and/or receipt of maintenance dialysis) from Alberta who accessed the ED for a non–life-threatening indication within the preceding 6 weeks between May 2024 and January 2025. We conducted individual semistructured interviews and analyzed transcripts in duplicate using a framework analysis approach with reference to an established framework defining CoC according to three types (i.e., relational, management, and informational). Thematic development involved both inductive and deductive techniques.

Results

Twenty-nine patients were included (12 in-center hemodialysis, one in-center nocturnal hemodialysis, seven peritoneal dialysis, five home hemodialysis, and four without KRT). Themes were identified within CoC types and across settings of before, during, and after the acute care encounter. Key relational continuity themes included stability and trust in care teams, disrupted therapeutic relationships, and re-establishing engagement in circles of care. Management continuity themes included safeguarding kidney supports and kidney care fragmentation in the ED. Informational continuity themes included patients as continuity self-advocates, bridging care through information sharing, and extending continuity beyond the ED.

Conclusions

Patients with kidney failure expressed varied experiences of CoC and identified important gaps relevant to the emergency care context. Strategies that bridge these perceived gaps across outpatient and acute care settings may help to mitigate the burden of ED use in this population.

Introduction

Kidney failure (i.e., eGFR <15 ml/min per 1.73 m² with or without receipt of KRT for at least 3 months) is a complex, chronic condition that is associated with high symptom burden and multiple comorbidities, such as hypertension, diabetes, and cardiovascular disease.^1–3 As a consequence, people with kidney failure experience a disproportionately high frequency of adverse health outcomes, including mortality, and acute care use compared with the general population and those with earlier stages of CKD.^1,4 In Canada, people with kidney failure access the emergency department (ED) an average of three times per year for a variety of urgent and emergent health concerns, which is three to eight times more frequently than those without kidney failure.^5,6 In a universal, publicly funded system where medically necessary primary care, hospital-based (e.g., ED care), and ambulatory specialist (i.e., nephrology care) services are covered for all Canadian residents, the frequent ED use seen in this population can exacerbate ED overcrowding, delays in care, and care fragmentation.⁷

Continuity of care (CoC) is a critical component of chronic disease management that has been associated with improved patient outcomes, including reduced ED use, fewer hospitalizations, and lower health care expenditures.^8–11 The types of CoC include relational continuity, which represents ongoing personal relationships between the service user and the health care professional(s); informational continuity, where information links care from one provider to another and from one health care event to another; and management continuity, where services are delivered in a complementary and timely manner, providing a sense of predictability and security in future care.¹² Compared with the general population, people with kidney failure tend to have lower primary care continuity despite frequent interactions with kidney care teams and other specialists.^13,14 Limited research among patients with earlier stage CKD demonstrates a stepwise increase in frequency of hospitalization and ED use with decreasing relational continuity of primary care, justifying the need for further study of CoC in the kidney failure context.¹⁵

Several health care integration efforts have sought to improve CoC and, consequently, patient outcomes in a variety of settings.^16,17 However, such strategies tend to be population-based and not tailored to the unique needs of individuals with kidney failure who often require time-sensitive and specialized interventions, such as dialysis. As people with kidney failure are managed largely by interdisciplinary renal programs, see several specialty care providers, and experience frequent care transitions, understanding their experiences of CoC is essential for addressing high ED use in this population. Therefore, in this study, we sought to explore how adults with kidney failure perceive CoC in relation to their recent ED visit to inform more tailored and person-centered care pathways.

Methods

Study Design and Setting

We conducted a qualitative descriptive study, which enabled us to capture in-depth experiences, perspectives, and meanings of complex phenomena and is well suited to applications in health care and policy.^18–20 This study took place in Alberta, Canada, across two kidney care programs, Alberta Kidney Care–North and Alberta Kidney Care–South, which cover all kidney care services across the province. The primary site was the University of Calgary (situated within Alberta Kidney Care–South). This study involved patients rostered in kidney care clinics and dialysis centers who experienced ED encounters in both urban and rural settings. We have reported our study in accordance with the consolidated criteria for reporting qualitative research.²¹ Approval was granted by the University of Calgary's Conjoint Health Research Ethics Board and University of Alberta's Health Research Ethics Board (REB21-1346).

Participant Selection

Eligible participants included adults (18 years or older) with kidney failure (either not requiring KRT or receiving maintenance dialysis [i.e., in-center hemodialysis, peritoneal dialysis (PD), or home hemodialysis (HHD)]), who had visited an ED within the preceding 6 weeks for any assessment that would not preclude participation in an interview (e.g., death, change in neurologic status). To capture diverse perspectives, participants were purposively sampled with a wide range of demographic (i.e., age, sex, geographic location) and clinical characteristics (i.e., treatment modality, length of time receiving dialysis) and regardless of ED disposition (i.e., admitted to hospital or discharged from the ED). Patients with a functioning kidney transplant, cognitive impairment, attending the ED for urgent psychiatric assessment, or incapable of providing informed consent were not eligible.

Clinical personnel from the provincial renal programs identified eligible participants, and interested individuals provided consent for contact by a study team member. Participants were given the option to schedule an interview via telephone/virtual call (all) or in person (primary study site), depending on preference. All participants provided written informed consent.

Data Collection

Individual, semistructured interviews were conducted in person (in a hemodialysis unit), by telephone, or virtually using the Zoom platform by two women team members (S. Love and H.E. Kotani). S. Love is a speech-language pathologist by training with extensive experience working with people with kidney disease. H.E. Kotani was a graduate student at the time of the study with prior nonclinical work experience with people living with kidney disease. A semistructured interview guide (Supplemental Item 1) was developed by HK with reference to relevant literature in this area and an established CoC framework (Supplemental Item 2),²² and with input from the supervisory committee. Open-ended questions prompted discussions about patients' experiences accessing ED care and concepts relevant to CoC. Interviews were audio-recorded and transcribed verbatim using the Zoom platform transcription feature and subsequently reviewed and edited for accuracy. Demographic and clinical data were self-reported by participants for the purpose of summarizing the sample and exploring thematic relationships. Reflexive field notes were taken for each interview to document initial impressions, nonverbal cues (where applicable), and personal reflections. Recruitment and data collection took place concurrently with analysis until data saturation was attained, which is the point at which no new information relevant to the objective emerged and is typically attained after 11–30 interviews with this methodology.²³ Recruitment and data collection took place concurrently with analysis until data saturation was attained, which was the point at which no new information relevant to the objective emerged and is typically attained after 11–30 interviews with this methodology.²³

Data Analysis

We used framework analysis as our primary analytic approach, given its relevance within health research disciplines and suitability for comparing qualitative data against existing theoretical models.²⁴ This method supported both deductive (theory-informed structure) and inductive (data-driven theme development) approaches, allowing us to first organize participants' experiences according to type of CoC and then develop novel themes within each CoC type.²²

Interview transcripts were reviewed for accuracy and familiarization by H.E. Kotani, who concurrently listened to audio recordings, read transcripts, and reflected on field notes. Transcripts were uploaded to NVivo software (Lumivero, version 14, released 2023) to facilitate data organization, coding, and retrieval. Two research team members (H.E. Kotani and M.J. Elliott) initially developed preliminary codes inductively and independently based on meaningful segments of text from the first three transcripts. They applied codes to remaining transcripts and met regularly to reconcile or modify codes, refine interpretations, and ensure analytic consistency. Once inductive coding was completed, coded data were then deductively mapped to continuity types using an established CoC framework to provide an overarching structure to the analysis and enable comparisons across participants and settings.^12,22 As the types of continuity are inherently interconnected, participant quotes that were assigned more than one code were examined in the context of the broader discussion and categorized to the type of continuity where they best supported the interpretive point. Distinct themes were developed within the relevant CoC categorization by identifying patterns, relationships, and contrasting views situated within and beyond the published framework.²⁴ The graduate student (H.E. Kotani) circulated an infographic summarizing preliminary themes to participants (Supplemental Item 3), who had the opportunity to provide feedback that was integrated into the refinement and finalization of presented themes.

Results

Our sample included 29 adults living with kidney failure from Alberta, Canada, of whom ten identified as women and 13 were older than 65 years (Table 1). Of those contacted, six either declined participation or could not be reached. Participants represented a range of kidney failure treatment modalities, including 12 in-center hemodialysis, one in-center nocturnal hemodialysis, seven PD, five HHD, and four without KRT (Table 2). With respect to ED use in the past year, ten participants reported having one to two ED visits, 15 reported having three to five visits, and four reported having more than five visits at the time of the interview (Table 3). On average, the duration of each interview was 45 minutes. In the following sections, we present each theme with supporting quotes according to its CoC type and setting within the continuum of care (Table 4 and Supplemental Item 4) and suggest gaps and potential strategies to enhance CoC for people with kidney failure (Figure 1).

Table 1.

Demographic characteristics of patients (n=29)

Characteristic	Participants, No. (%)
Age, yr
Under 40	1 (3.4)
40–64	15 (51.7)
65 years or older	13 (44.8)
Sex
Cisgender man	19 (65.5)
Cisgender woman	10 (34.5)
Ethnicity
Hispanic	1 (3.4)
Indigenous	2 (6.9)
Southeast Asian	2 (6.9)
Prefer not to answer	1 (3.4)
Education
Some high school	1 (3.4)
High school diploma	4 (13.8)
Technical certificate/diploma	7 (24.1)
Bachelor's degree	12 (41.4)
Master's degree	1 (3.4)
Graduate or professional degree	1 (3.4)
Prefer not to answer	3 (10.3)
Employment
Full-time	0 (0)
Part-time	2 (6.9)
Casual	1 (3.4)
Not employed	8 (27.6)
Disability	5 (17.2)
Retired	12 (41.4)
Prefer not to answer	1 (3.4)
Marital status
Married	16 (55.2)
Common law	1 (3.4)
Divorced	3 (10.3)
Single	8 (27.6)
Widowed	1 (3.4)
Household income
<30,000	7 (24.1)
30,000–59,000	6 (20.7)
60,000–99,000	7 (24.1)
>100,000	2 (6.9)
Prefer not to answer	7 (24.1)

Table 2.

Clinical characteristics of patients (n=29)

Characteristic	Participants, No. (%)
Cause of kidney disease
Diabetes	10 (34.5)
GN (e.g., IgA nephropathy)	4 (13.8)
High BP	3 (10.3)
Polycystic kidney disease	1 (3.4)
Obstruction (prostatic hypertrophy, kidney stones)	2 (6.9)
Unsure	6 (20.7)
Other	3 (10.3)
Length of time with kidney failure, yr
<5	11 (37.9)
5–9	5 (17.2)
10–20	3 (10.3)
More than 20	7 (24.1)
Prefer not to answer	3 (10.3)
Length of time on dialysis, yr
<1	6 (20.7)
1–2	6 (20.7)
3–5	6 (20.7)
More than 5	6 (20.7)
Unsure	1 (3.4)
Not receiving KRTy	4 (13.8)
Type of dialysis currently receiving
In-center hemodialysis	12 (41.4)
PD	7 (24.1)
HHD	5 (17.2)
In-center nocturnal hemodialysis	1 (3.4)
Not receiving KRTy	4 (13.8)

HHD, home hemodialysis; PD, peritoneal dialysis.

Table 3.

Patient-reported emergency department and hospital admissions

Characteristic	Participants, No. (%)
ED visits in last year
1–2	10 (34.5)
3–5	15 (51.7)
More than 5	4 (13.8)
Hospital admissions in last year
None	2 (6.9)
1–2	18 (62.1)
3–5	8 (27.6)
More than 5	1 (3.4)
Location of most recent ED visit
Urban tertiary care center	19 (65.5)
Urban community center	4 (13.8)
Regional care facility	3 (10.3)
Rural facility	3 (10.3)

ED, emergency department.

Table 4.

Exemplar quotes from participants presented by theme and setting in relation to the acute care encounter

Themes and Subthemes	Exemplar Quotes
Relational continuity themes
Stability and trust in care teams (before acute care encounter)	“I have a good, close relationship with them [kidney care team]. I've been going for a couple years, and I got to know everybody quite well and they're very dedicated, competent people” (patient 6—man, >65 yr, in-center hemodialysis) “The nurses at dialysis look after me pretty good. My family doctor, he's pretty good too. You know, if he doesn't know, he'll find somebody who does” (patient 8—man, >65 yr, in-center hemodialysis)
Disrupted therapeutic relationships (during acute care encounter)	“Instead of waiting 3 or 4 d for an appointment, they'll tell me to come in through emergency. I'll probably see my own doctors that way” (patient 24—man, 40–64 yr, PD) “I had tried to contact [kidney care nurse] first, but there was no availability, so I went to the walk-in” (patient 21—woman, 40–64 yr, PD) “Well, they couldn't stabilize me. That was the thing. They don't really have anything on service [in clinic] there to help you that much. If anything happens there, they call a paramedic” (patient 8—man, >65 yr, in-center hemodialysis)
Re-establishing engagement in circles of care (after acute care encounter)	“Before the last episode, my nephrologist felt he would only need to see me every 5 mo because I was so stable. Now he wants to see me every 2 mo after this last emergency visit” (patient 17—man, >65 yr, nondialysis CKD) “I don't think it's possible for the patient to manage the whole thing and there's no way as the patient you even can manage anything. They [health care providers] have to go through their procedures and checks, and I wouldn't try and interfere with that in any way. But you just need somebody who's kind of overall coordinating to tell you what's going on” (patient 3—man, >65 yr, in-center hemodialysis)
Management continuity themes
Safeguarding kidney supports (before acute care encounter)	“Before all this happened, I was doing all my workup for transplant. And last Friday, to put the cherry on the top, I got a phone call from pretransplant [program], saying that all the workup, all the tests, all the meetings with the surgeon are all canceled because of this diagnosis” (patient 25—woman, <40 yr, in-center hemodialysis) “My kidneys can collapse at any time because of taking any wrong medicine or wrong food, or maybe a combination, right? So, I can collapse anytime. So, if I kept on waiting, then, please, I'm gone” (patient 1—man, 40–64 yr, in-center hemodialysis)
Kidney care fragmentation in the ED (during acute care encounter)	“If somehow, during that 9 hours they could have called the nephrologist to the ER, because once he saw me, he made orders, did his whole assessment within 10 minutes, and had the best answers” (patient 20—man, >65 yr, PD) “I don't think there was anything else that could've been done, but it felt horrible at the time. The nurses said, ‘Can you do your own dialysis?’ and I thought, well, if they can't, I've got to. So, at midnight my daughter brought my dialysis machine to the hospital” (patient 21—woman, 40–64 yr, PD) “You can't really just get in with [kidney nurse] because that's how busy she is. I have to go into emergency. But I'm going to get a letter from them [kidney nurse], that says, ‘This is what's wrong.’” (patient 26—woman, 40–64 yr, HHD)
Informational continuity themes
Patients as continuity self-advocates (before acute care encounter)	“I've got the Alberta Health App on my phone, and when I looked at the results, I could see that there was something wrong. So, I called my nephrologist's office and was seen the next day, and that visit confirmed the testing. The GFR dropped further, and he wanted me to be admitted” (patient 17—man, >65 yr, nondialysis CKD) “All the information was sent down to my kidney team while I was in hospital. That's another reason why I chose [hospital], because my team is right there. If we have problems they're right in the same building” (patient 22—man, >65 yr, PD)
Bridging care through information sharing (during acute care encounter)	“I phoned the CKD clinic to let them know that I was going into emergency. I wanted them to let my nephrologist know that that's what we were doing, so, I believe that was communicated” (patient 29—man, >65 yr, nondialysis CKD) “The [ED] doctor was excellent. He was very concerned about my kidneys. He said, there is an antibiotic that he wanted to put me on, but he had to check with the pharmacist to see if it's going to affect the kidneys. And as it turns out, that one could not be used” (patient 22—man, >65 yr, PD)
Extending continuity beyond the ED (after acute care encounter)	“We [kidney care nurse and I] went through everything that happened like what I was told at the hospital, and she kept checking on me until she knew I was okay [with new care recommendations]” (patient 11—woman, 40–64 yr, HHD) “I called the nurse manager about what had happened. I wanted a bit of an explanation as to why everything had been left that long. Like, last month when you went over my blood work, you should have seen that it [hemoglobin] dropped, and I needed to be back on [medication]. How come it wasn't taken care of sooner?” (patient 19—woman, 40–64 yr, in-center hemodialysis) “After I was released from the emergency, I phoned the CKD clinic just to just to clarify if this was a renal dose, and it wasn't. So, the nephrologist decreased it to the proper renal dose, and that's why I went back to the clinic” (patient 29—man, >65 yr, nondialysis CKD)

ED, emergency department; ER, emergency room; HHD, home hemodialysis; PD, peritoneal dialysis.

Figure 1.

CoC gaps across acute care settings and potential strategies for improvement. CoC, continuity of care; ED, emergency department.

Relational Continuity Themes

Stability and Trust in Care Teams (before Acute Care Encounter)

Participants expressed confidence in the care received in the community, citing long-standing and consistent relationships with providers, including, but not limited to, nephrologists, kidney care nurses, primary care physicians, and other members of the multidisciplinary team. As one participant shared: “I doubt that I'll ever find another nephrologist as kind and compassionate and somebody that I've learned to trust” (patient 12). However, they acknowledged how dialysis-related complications and medication management could be challenging for providers less familiar with kidney failure treatment protocols during acute illness, which could undermine this trust and rapport. Many expressed an appreciation of providers' efforts at collaboration, communication, and proactive engagement by their outpatient care teams, including “easily getting to speak to somebody there if I'm concerned” (patient 17), to promptly address health concerns as they arose.

Disrupted Therapeutic Relationships (During Acute Care Encounter)

Participants commonly described how continuity and confidence in their care during acute illness could become compromised due to less established relationships with acute care teams and the stressful nature of care transitions. They indicated how their usual outpatient care teams, such as primary care or nephrology teams, were often unable to address their urgent health concerns, prompting uncertainty around who was primarily responsible for their care at the onset of new or progressive symptoms. Several described instances of being advised by their outpatient providers to “just drive straight to the hospital [and not] waste time to come here” (patient 5) when reaching out to them for support. Seeking care in the ED became the default for many participants, not due to preference but rather a perceived lack of alternatives.

Re-Establishing Engagement in Circles of Care (after Acute Care Encounter)

Following their acute care encounter, participants described varied experiences of re-establishing relational continuity with their outpatient teams but indicated this was critical for sustaining longitudinal therapeutic relationships. Participants reported a need for greater assistance navigating the discharge transition than they were typically provided, including assistance with scheduling follow-up, accessing transportation or home supports, and connecting to pharmacy or social work. This left many participants feeling “lost in the system” (patient 3). By contrast, those who described smoother transitions following their acute care encounter more commonly reported receiving dedicated supports and streamlined follow-up care. For example, one participant described feeling more connected to a broader network of supports following ED discharge related to the promptness with which outpatient teams scheduled follow-up appointments: “I had my appointments all set up, and so there's quite a few people in the circle. I have lots of support” (patient 16).

Management Continuity Themes

Safeguarding Kidney Supports (before Acute Care Encounter)

Before requiring or seeking acute care, participants described taking steps to maintain their health, including prioritizing their eligibility for critical interventions such as kidney transplantation. As one participant preparing for kidney transplant whose episode of rectal bleeding prompted ED assessment explained: “The last thing I wanted was to find out my symptoms are more serious and then needing a blood transfusion, because that would really mess up my transplant stuff” (patient 27). Participants reported being diligent about bringing new or concerning symptoms to the attention of their care teams. However, when symptoms fell outside of the scope of their usual outpatient providers, the ED was often viewed as the only acceptable option for timely assessment, even when the issue did not initially seem severe. They explained how the guidance offered by providers who understood the unpredictable nature of living with kidney failure helped strengthen management continuity and build confidence in future care.

Kidney Care Fragmentation in the ED (During Acute Care Encounter)

Participants identified a need for additional specialized kidney care support within acute care settings. While they acknowledged the emergency care expertise of ED providers, they wondered if a lack of readily accessible kidney-focused care, such as dialysis or nephrology consultants, may contribute to delays in initiating appropriate management and threaten care continuity in this setting. As one participant explained: “In the emergency [department], they're doing their best, but if they had somebody there that knew exactly all the problems with ESKD… that would have helped immensely” (patient 10). Such gaps in kidney care in the ED were most noted among patients receiving PD, who described being asked to bring and manage their dialysis machines independently at some sites due to staffing challenges. Other participants, particularly those reporting more frequent ED use, relayed efforts to maintain kidney care continuity by providing letters or clinical documentation from their outpatient providers to support their care in the ED.

Informational Continuity Themes

Patients as Continuity Self-Advocates (before Acute Care Encounter)

Participants described advocating for themselves to maintain continuity throughout transitions in and out of acute care, including gaining access to their health information, ensuring their health information was conveyed across care settings, and using that information to guide decisions about where to seek ED care. Many participants described assuming the role of an informal care coordinator to ensure that involved care teams were kept informed. One patient receiving HHD described their persistence in seeking answers to unresolved medical issues that fell in “the gray area” (patient 27) between medical specialties. Others described preferentially selecting EDs located in facilities where their kidney care team was located or where they knew staff and care protocols to maintain informational continuity. As one participant shared: “Because I knew that the [kidney] doctor that I had been talking with, and my podiatrist, would be on shift at [hospital]. I knew that if I went there that I'd be dealing with that team” (patient 10).

Bridging Care through Information Sharing (During Acute Care Encounter)

Participants expressed the importance of timely and effective communication between outpatient and emergency care teams during ED encounters. Effective information sharing was seen as essential to avoid repeated assessments, minimize treatment delays, and ensure their kidney-specific needs were addressed. Some participants shared experiences of communication gaps and uncertainty around whether their outpatient teams were aware of their ED visits, or whether ED teams had access to necessary outpatient records detailing their health needs. As one participant receiving HHD reflected: “The emergency [department] quite often doesn't really know how to deal with me… I suppose they speak with the nephrologist or the kidney team there” (patient 11). Several participants described relaying their medical history, medications, and specific treatment regimens themselves to ED providers in detail when they felt their complete information was not readily available. Those with more frequent ED visits (i.e., patients reporting less than two ED visits per year) more commonly remarked upon a higher perceived level of care coordination between their outpatient care teams and ED providers.

Extending Continuity Beyond the ED (after Acute Care Encounter)

Participants highlighted the importance of timely, accurate follow-up after acute care encounters and their ability to implement care recommendations to support continuity. They often viewed their acute care experiences more positively when providers initiated prompt follow-up to reinforce treatment plans and monitor recovery. As one participant stated: “[Nephrologist] didn't have to call the next day, but it was good to hear his thoughts and follow up with how I was doing” (patient 29). In the absence of such communication, some participants helped to bridge continuity between acute and outpatient teams by clarifying instructions, raising concerns, or requesting necessary health services on their own behalf, such as: “I made a complaint and said I need to get dialysis now because I missed it when I was in the hospital last night. I need to have it today” (patient 2).

Discussion

This qualitative study provides new insight into how people with kidney failure experience CoC in relation to their recent ED encounters. Unlike much of the existing CoC research, which is largely quantitative and situated in primary care contexts, this study used a qualitative descriptive lens to characterize disruptions in CoC that frequently occur at transition points in care before, during, and after acute care visits. CoC seemed to be most vulnerable during the acute care encounter, with many patients describing steps they took themselves to bridge continuity gaps and ensure smoother transitions. Our findings complement the existing literature by showing how individual-level and system-level factors, such as perceived breakdowns in therapeutic relationships and disruptions in informational continuity during acute illness, shape patients' experiences while also presenting opportunities for intervention to strengthen continuity.

CoC has been recognized as a marker of high-quality service delivery, but its definitions and applications have evolved over time. While similar to care coordination or integration, CoC is distinct in emphasizing patients' experiences of connected and consistent care over time.²⁵ Previous works, including the Bice-Boxerman CoC Index²⁶ and studies by Saultz et al.²⁷ and Garrison et al.,²⁸ have linked higher continuity to better health outcomes in primary care settings. In a population-based study of people with stage G3–4 CKD (i.e., eGFR 15–59 ml/min per 1.73 m²) in Alberta, Canada, Chong et al. demonstrated an association between lower primary care continuity and increased ED use for potentially preventable conditions related to their CKD (such as hyperkalemia).¹⁵ Our qualitative study extends this work by shedding light on perceived contributors to the high acute care use observed in people with kidney failure and potential consequences of disruptions in their care continuity. Concerns raised by patients about the practicalities of dialysis during acute illness and impacts on transplant eligibility highlight experiences unique to living with kidney failure that would benefit from strengthened continuity.

Participants in our study described strong relational continuity in outpatient settings, especially with nephrology and primary care providers. However, they perceived care fragmentation during acute illness related to their unfamiliarity with new providers and lack of confidence in the communication of their medical history across settings. In Alberta, while hospital-based and select ambulatory care programs (such as nephrology and dialysis centers) are linked through an integrated clinical information system, these do not consistently communicate with primary care and community-based teams that operate different electronic health records. The impacts of this discontinuity in informational flow are bi-directional—while ambulatory clinicians in the circle of care for people with kidney failure often cannot share access to their medical data with acute care teams, they also experience delays and gaps in receiving updates and disposition plans from a patient's acute care encounter. Prior research suggests similar challenges in CKD co-management between primary care providers and nephrologists, including unclear role boundaries and communication gaps across providers, as well as the potential for cross-boundary transitions to weaken all types of CoC.^29,30

In our study, participants suggested that disruptions in CoC contributed to delays in care and, at times, the need for patients to advocate for themselves to maintain continuity. Participants attempted to mitigate continuity gaps through measures such as selecting an ED affiliated with their nephrology program and connecting directly with their outpatient teams during their illness. Similarly, Poremski et al. conducted a qualitative study of frequent ED use in the context of mental health and addiction challenges, and found that without integration of informational and management continuity between community and acute care teams, the service users bear full responsibility of following up with their care.³¹ While these efforts reflect resilience, they also emphasize systemic shortcomings and the need for health system interventions that reduce the dependence on patient-driven coordination and strengthen longitudinal, cross-setting collaboration in the care of people with kidney failure.

Participants described instances where they perceived that delays in involving the nephrology team in the ED contributed to unnecessary testing and treatment lag for their urgent health concern and/or kidney failure (such as dialysis). However, the high degree of complexity of people with kidney failure coupled with their high frequencies of acute care use can make it challenging to attend to their urgent health concerns in the ED setting. These challenges may be compounded by the limited experience of non-nephrology providers with dialysis or kidney failure-specific management needs. Moreover, population trends of increasing complexity among nephrology and general hospital inpatients underscore growing concerns about capacity, workflow, and care quality in acute facilities.^30,32 As complexity encompasses not only medical factors (e.g., multimorbidity, polypharmacy) but social characteristics (e.g., income, education) as well, supports at both the individual and health system levels and interventions to sustain care continuity across settings are required.³³

Based on our findings, we suggest potential gaps in continuity for people with kidney failure that occurred before, during, and after patients' acute care encounters and strategies to address them that require further exploration (Figure 1). For example, enhanced availability of after-hours care, such as on-call nephrology nursing or physician support for dialysis-related concerns, could enable prompt attention for urgent health needs, avert the need for ED use, and engage patients in their own care.^34,35 In addition, streamlining communication across settings and implementing patient-centered hospital or ED discharge processes ensures consistency in care and sharing of health-related information across acute care transitions. Few outpatient interventions for managing acute complications of CKD outside the ED have been studied, which highlights the need for formal process mapping and intervention development and testing to target this population.³⁶ Participants' suggestions for improving CoC through communication tools (such as shared electronic health records) and connectivity between primary and nephrology care teams to support comanagement could be extended to include acute care teams as well.²⁹ Finally, dialysis requirements during acute illness, either as maintenance treatment or to manage urgent disease-related complications (e.g., critical hyperkalemia, volume overload), were important considerations raised by participants with implications for CoC in relation to emergency care encounters and point to the need for strategies tailored to this population.^35,37

A key strength of this study was its rigorous methodology and application of an established CoC framework, which enabled capture of diverse and nuanced experiences of CoC across a range of treatment types, presenting concerns, and clinical and demographic characteristics. However, we acknowledge some limitations. Patients' recall of specific events may have been impacted if their ED encounter was several weeks previously, they were critically ill, or they experienced a prolonged intervening hospitalization. To address this, open-ended questions with prompting by interviewers with varied backgrounds invited patients to share their perspectives on CoC without undue influence and positioned them as the experts in their own care. In addition, although our sample captured a range of experiences, the demographic composition may not fully represent the broader population of people with kidney failure. Specifically, our sample was predominantly White, English-speaking, and tended to have higher levels of education and socioeconomic stability, highlighting a need for focused work on CoC in more diverse or marginalized populations. Finally, although our findings were derived in a specific context, we have presented themes and their implications for CoC in such a way that supports their utility in other kidney care programs or care delivery models.

This study highlights important contributors to perceived CoC among people with kidney failure experiencing an emergency care encounter and points to the need for enhanced communication and care integration across nephrology, primary, and acute care settings. Strategies addressing perceived gaps in management and informational continuity, particularly during transitions in care, may help mitigate the burden of ED and acute care use in this increasingly complex population.

Supplementary Material

kidney360-7-1563-s001.pdf ^{(1.4MB, pdf)}

kidney360-7-1563-s002.pdf ^{(606.2KB, pdf)}

Disclosures

Disclosure forms, as provided by each author, are available with the online version of the article at http://links.lww.com/KN9/B565.

Author Contributions

Conceptualization: Meghan J. Elliott, Hana E. Kotani.

Data curation: Meghan J. Elliott, Hana E. Kotani, Shannan Love.

Formal analysis: Meghan J. Elliott, Hana E. Kotani, Shannan Love.

Funding acquisition: Fariba Aghajafari, Maoliosa Donald, Meghan J. Elliott, Jennifer M. MacRae, Andrew D. McRae, Paul E. Ronksley, Stephanie Thompson.

Investigation: Meghan J. Elliott, Hana E. Kotani.

Methodology: Meghan J. Elliott, Tyrone G. Harrison, Hana E. Kotani, Stephanie Thompson.

Project administration: Shannan Love.

Resources: Shannan Love.

Software: Shannan Love, Hana E. Kotani.

Supervision: Meghan J. Elliott, Tyrone G. Harrison, Stephanie Thompson.

Validation: Bonnie Corradetti, Meghan J. Elliott, Nancy Verdin.

Visualization: Meghan J. Elliott, Hana E. Kotani.

Writing – original draft: Meghan J. Elliott, Hana E. Kotani.

Writing – review & editing: Fariba Aghajafari, Bonnie Corradetti, Maoliosa Donald, Meghan J. Elliott, Tyrone G. Harrison, Hana E. Kotani, Shannan Love, Jennifer M. MacRae, Andrew D. McRae, Paul E. Ronksley, Stephanie Thompson, Nancy Verdin.

Funding

M.J. Elliott: Canadian Institutes of Health Research (178157).

Declarative Statements

This study includes clinical experimentation and received Institutional Review Board or Ethics Committee approval. All patients provided written informed consent. This study includes clinical experimentation and complies with the Declaration of Helsinki.

Data Availability Statements

Original data cannot be shared. Explanation Why Data Cannot Be Shared: This study used individual, participant-level data collected during interviews. We are unable to make our dataset available due to restrictions on sharing potentially identifiable data as outlined in our Research Ethics Board certification. Inquiries related to this study's dataset can be directed to the corresponding author.

Supplemental Material

This article contains the following supplemental material online at http://links.lww.com/KN9/B566.

Supplemental Item 1. Interview guide.

Supplemental Item 2. CoC framework.

Supplemental Item 3. Infographic shared with participants for feedback.

Supplemental Item 4. Additional exemplar quotes.