Abstract
Objective Patients may use emergency departments (EDs) to meet their health needs when ambulatory care systems are not sufficient. We aim to describe contributing factors to the decision made by persons with inflammatory arthritis (IA) to present to the ED, as well as their experiences of ED care and postdischarge follow-up.
Methods An embedded mixed-methods approach was taken to contextualize quantitative data with associated free-text responses from an online survey distributed to residents of Alberta with a known IA condition and an ED visit.
Results Eighty-two persons (63% aged 16-55 years, 48% female, 50% urban residents) with rheumatoid arthritis (48%), psoriatic arthritis (12%), spondyloarthritis (6%), or gout (34%) completed the survey. Presenting concerns were arthritis flare (37%), chest pain (15%), injury (12%), and infection (11%). Of all visits, 29% proceeded directly to the ED, 35% attempted accessing ambulatory care first, and 32% arrived for a return visit. In presentations for arthritis flare, patients were aware of the rheumatology service being contacted by the ED provider for advice in just 9% of events. Challenges in healthcare system coordination and system pressures resulted in patients requiring ED attendance to assess their concern. The quality of communication and relationality developed between patients with IA and healthcare providers informed experiences of ED care.
Conclusion Modifying rheumatology ambulatory care models could better meet patient needs and ultimately reduce avoidable ED use by patients with IA.
Health service model restructuring initiatives to achieve early diagnosis and strict control of disease activity targets in rheumatology include triage to identify high priority referrals,1 specialized multidisciplinary early inflammatory arthritis (IA) clinics2 and care pathways,3 and allied health practitioner–led care.4 Despite the intended service model changes, feasibility and successful adoption is limited in part by rheumatology resource limitations.5,6 It may not be possible for rheumatologists and allied health practitioners providing specialized rheumatology care to address urgent clinical concerns arising in their practices, leading patients to seek care from emergency departments (EDs).
As the proportion of total Canadian healthcare expenditures ED use by patients with IA (inclusive of autoimmune-driven diseases, such as rheumatoid arthritis [RA], spondyloarthritis [SpA], psoriatic arthritis [PsA], and those occurring from abnormalities in metabolism leading to deposition of crystals in the joint, including gout and pseudogout) in the Canadian healthcare system is significant. In 2017, in the province of Alberta, Canada, there were 172,000 prevalent cases of IA conditions in patients who made just over 156,000 unique ED visits, representing nearly 7% of all ED use in the province, despite IA conditions affecting 3.9% of the total population.8 Factors that contribute to ED use include living in rural locations8 and having poor continuity of rheumatology care.9
An understanding of systemic and personal factors ultimately leading a person with IA to present to an ED for care is needed to contextualize possible health system solutions to reduce avoidable acute care use. As such, we aim to describe contributing factors to the decision to present to the ED, patients’ expectations and experiences of the ED visit, and the ability to adopt postdischarge recommendations.
METHODS
Study design. An embedded mixed-methods research design was used to summarize survey data and conduct thematic analysis of free-text responses to contextualize decision making and experiences of ED care. Embedded mixed method design is described as being where one type of data provides a secondary role when embedded within the methodology of the primary data type.10 In this study, the primary quantitative data were supported by qualitative data in the form of free-text responses embedded within the survey.
Survey development. The survey content was informed by previous studies conducted in Alberta on the topic of low-acuity presentations to EDs11,12 and contextualized to IA conditions, with the input of patient partner researchers and both rheumatology and ED clinicians. The 52-question survey consisted of 2 parts: the first was specific to the ED experience (eg, presenting symptom, attempts to seek care prior to an ED visit, reasons why ED care was ultimately sought, experience in the ED, plan for healthcare follow-up, and satisfaction leaving the ED) and the second was to collect demographic characteristics, although this part was optional. The response options included a variety of single-response variables (n = 43), multiple-response variables (n = 6), or free-text (n = 3) responses (Supplementary Material, available from the authors upon request). The average survey completion time was 14.8 (SD 13.3) minutes.
Participants. Invitations to complete an online survey were mailed out to the primary residence listed for a random sample of individuals meeting an administrative case definition for an IA condition of either RA, SpA, PsA, or gout13 and who had an ED visit recorded by the provincial health authority, Alberta Health Services, within the previous year. We elected to include both autoimmune and crystalline IA conditions as these entities all may have acute disease flares. Two separate mailouts occurred (October 2021 and March 2022), with each being sent to 3000 individuals.
Analysis. Our analyses considered overall responses, as well as a specific analysis for responses related to an IA flare presentation. For quantitative data, descriptive statistics were used to summarize participant demographics and to describe patterns of ED use, reason for ED visit, description of the events occurring at the ED visit, and experience with healthcare follow-up in the community following discharge. All statistical analyses were conducted using SPSS Statistics version 29.0 (IBM Corp.). Further, thematic analysis was used to identify and categorize free-text response data.14 After data familiarization and immersion by repetitive reading of free-text responses in relation to survey questions, a scissor-and-paste method was used to develop coding schemes.15 Data segments were extracted from their initial context and assembled alongside other instances of data related to the same subject to enable the identification of patterns and trends across the entirety of the data. The generated codes were subsequently grouped to construct main themes and subthemes, and exemplar quotes were identified. The coding was performed by 1 author (EP) and the data were verified in their entirety by 2 independent authors, 1 of whom is a rheumatologist (CB) and the other a qualitative researcher (PR), to ensure both content and methodologic rigor. The construction of themes was achieved by a collaboration from all 3 authors (EP, CB, PR), each of whom ultimately reviewed the free-text responses in conjunction with survey responses to ensure no significant data were overlooked.
Ethics. The University of Calgary Conjoint Health Research Ethics Board approved this study (ethics ID REB20-0357).
RESULTS
Participant demographics. A total of 82 participants with IA conditions (48% RA, 12% PsA, 6% SpA, 34% gout) completed the survey (response rate 1.4%), with equal representation of female (48%) and male participants (48%) and rural and urban residents (each 50%) for those who elected to provide detailed demographic data (51% of the sample). A majority were between 16 and 55 years of age (63%), currently living with other individuals (80%), and of European descent (80%). All had lived in Canada for ≥ 1 year. Most participants were employed (58%) and had completed a university, college, or trade school degree as their highest level of education (55%). The population comprised largely nonsmokers (63%) and nonusers of cannabis (63%). Participants with ED visits specifically for IA flares were more frequently male (62% vs 48%), a rural or remote resident (29% vs 23%), and employed (71% vs 58%). Nearly all participants had a family physician (93%), but only 43% saw a rheumatologist yearly for their arthritis condition. Those with an ED visit specifically for an IA flare were less likely to have a family physician (86% vs 93%) or see a rheumatologist annually for their arthritis condition (33% vs 43%; Table 1).
Demographic characteristics of survey participants.a
ED access. In the year prior to survey completion, 45% of participants reported a single ED visit, 38% had 1-3 visits, and 15% had ≥ 4 visits. Individuals typically chose to access an ED in their geographical area, or one that had a similar population density (78%). Thus, aligned with patient demographics, 55% of patients accessed the ED in an urban setting, with 23% accessing rural sites, 16% medium region centers, and 5% remote sites. Very few of the presentations arrived by ambulance (6%), and half had transportation assisted by family members or friends (48%).
Reasons for ED use. Over one-third (37%) of visits were for an arthritis flare or other musculoskeletal (MSK) symptoms, with other primary presentation symptoms being chest pain (15%), injury (12%), and infection (11%).
Ambulatory care access attempts prior to presentation. Several patients (29%) proceeded directly to the ED for their concern, 35% of patients attempted to access care at ≥ 1 location prior to presenting to the ED, and 32% attended the ED as a return visit within 72 hours of the initial visit. Individuals who attempted to access care prior to the ED visit attended a primary care (21%), walk-in (35%), or rheumatology (7%) clinic; connected virtually with a healthcare professional (7%); used Alberta Health Services’ Health Link phone line (nurse-based health advice phone line that operates 24 hours/day, 7 days/week16; 24%); or visited another healthcare provider, such as a chiropractor, physiotherapist, or nurse practitioner (17%). Only individuals who saw a rheumatologist yearly attempted to attend a rheumatology clinic for their concerns. Some of those who attended the ED for a return visit could not follow up after the initial ED discharge with their family doctor (15%) or rheumatologist (12%), and most had unresolved (39%) or worsening symptoms (31%). One-quarter (26%) of patients experiencing an arthritis flare or MSK concern did not attempt to seek care elsewhere prior to attending the ED. Of the 39% (12/31) of patients with an arthritis flare who attempted to access care at ≥ 1 location prior to the visit, just 1 individual saw their rheumatologist. For those returning to the ED for arthritis flare symptoms after an initial discharge (n = 11), 27% could not follow up with their rheumatologist and 18% could not follow up with their primary care provider (Table 2).
Ambulatory care access attempts related to ED visits.
Decision to attend the ED. Thematic analysis of free-text responses (N = 65) highlighted that challenges in healthcare system coordination and system pressures drove ED use (Table 3). Some visits were motivated by a need for timely reassurance about symptoms while awaiting rheumatology reassessment: “I was waiting to see a rheumatologist and was in a great deal of pain and was scared. I wanted reassurance I wasn’t becoming more ill while waiting on rheumatology” (patient 81, RA, urban location; sex and age not provided).
Expectations of ED visits and experiences.
ED care experiences. Strained communication and the lack of relationality between patients with IA conditions and ED healthcare providers were reported by participants (Table 3). Participants reported lengthy wait times in the ED before being assessed and had expectations that they would be comprehensively examined, given the complexity of their underlying IA condition, to determine the cause of their symptoms. However, participants perceived a deviation from the comprehensive assessment of chronic disease that they were expecting, and instead found that doctors focused only on the acute symptoms or presenting issues. Patients would then leave the ED frustrated and confused when the cause of their symptoms was not explained to them and their disease experience was not acknowledged: “There was still no explanation for why I was experiencing severe stomach pains, chest pains, and brain fog, and no further inquiry into why I have an assortment of other symptoms that don’t fully correlate to my RA diagnosis” (patient 59, RA, urban location, female, aged 16-20 years).
In the ED, patients desired clear and consistent communication and for there to be a relational approach to their care, with team members building connectedness and being empathetic. Often, the interactions were short in duration, which left patients feeling ignored and rushed out: “Gone are the days of hospitals actually treating anyone that my parents talk about, it’s all just temporary Bandaids, so you can get out of there fast enough so they can see the next person” (patient 1, SpA, urban location, female, aged 26-35 years). This contributed to the patients leaving the ED feeling that their symptoms were unexplained or unresolved, leading to return visits for the same concern. Moreover, patients with chronic conditions such as IA desired that their knowledge and lived experience be considered and respected in the interaction with healthcare providers. Patients reported that either every symptom they presented with was attributed to arthritis by the healthcare provider, even when the patient does not think this to be true, or that they are not believed when they indicate their symptoms are related to arthritis: “[It] didn’t feel like they were listening to me about my symptoms, [it was] not feeling like my RA and I really felt that something else was wrong” (patient 47, RA, medium region center, female, aged 36-45 years). Patients with IA sensed that they were perceived negatively when using the ED as a resource for chronic disease management, which contributed to a perception of lower quality of interaction with healthcare providers and satisfaction with their ED visit: “I do struggle if I go to different ER where my doctor doesn’t work as sometimes they don’t treat me well due to my chronic illness” (patient 46, RA, urban location; sex and age not provided).
Discharge and post-ED visit care. Patients with IA experiencing arthritis flare or MSK symptoms were rarely informed that rheumatologists were involved in their care during the ED visit. Participants reported that they were aware the ED provider contacted a rheumatologist for advice in only 9% of arthritis flare presentation events. A large proportion of patients (42%) had concerns remaining after being discharged from the ED, such as not having a clear understanding about the reasons for their symptoms (28%), not having a care plan established (31%), or not receiving instructions about symptoms to watch out for or reasons to return to the ED (24%). One-third (33%) of patients reported leaving the ED without feeling reassured. Participants perceived that the onus was on them to navigate the healthcare system, advocate for themselves, and seek help when and where appropriate: “It’s endless rounds of medical visits which never really end up addressing the base causation. You learn to try to handle it by yourself ” (patient 19, gout/pseudogout, rural location, female, aged 56-65 years). Volume pressures were also sensed by participants. Patients expected to be discharged once they were able to move safely, access necessary prescriptions, and arrange transportation home, yet they suggested they were often discharged quickly and without those needs met: “I was still very unwell, however they felt there was nothing more they could do. I was unsteady and was not escorted out or asked how I was getting home. Then had to wait at the [hospital] pharmacy for 45 [minutes] until the prescriptions were filled. It was not ideal, so I sat in the hospital reception for 1 hour until I felt like I could drive” (patient 66, RA, urban location; sex and age not provided). Despite these concerns, 71% of respondents still felt the ED visit had been the best care option for them at the time.
Compared to those presenting to the ED for all concerns, those presenting for arthritis flare symptoms had more concerns upon discharge from ED (52% vs 42%), had less understanding about the reasons for their symptom onset (29% vs 34%), and were more frequently not reassured after their visit (45% vs 33%). As for the management plan, it was more common for patients presenting with arthritis flare to leave without a care plan (48%) and without clear instructions on what symptoms to watch for or reasons to return to the ED (48%), compared to presentation for all reasons (31% and 24%, respectively).
DISCUSSION
Matching access to care and appropriateness remains a critical tenet of quality health care. Our study highlights the difficulties experienced by persons with IA conditions attempting to navigate the health system for urgent concerns prior to an ED visit and following discharge for any condition and for IA flare symptoms, specifically. These experiences deviate from the desired continuity of care promoted in primary health care (distinct from primary care, and inclusive of promotive, preventative, curative, and rehabilitative ambulatory care services) by the World Health Organization Alma-Ata Declaration17 and its revisit,18 as well as a previous publication summarizing opportunities to reduce ED utilization.19 Our study also reports how patients with IA conditions experience the ED, as well as the tensions with providers that they perceive when the ED is accessed for chronic illness assessment. In the ED, patient treatment (both medical and interpersonal) is influenced by the professional interests of clinicians (eg, emergency clinicians derive professional recognition and personal satisfaction from treating emergent cases) and organizational interests of departments (eg, controlling volumes, not doing work that is perceived to be the work of other services).20 Education about the role of the ED in the healthcare system and alternative access points for chronic disease management may ultimately improve patient experiences.
Multiple approaches to alleviating ED volume pressures have been proposed,19,21 with some having direct applicability to rheumatology care providers. Education and self-management support would encourage reduced presentations to the ED. Patients confident in managing their own health have 32% fewer ED visits and 38% fewer emergency hospital admissions.22 Strategies include providing evidence-informed sources of information to develop a self-management plan for flares, which has been successful in reducing ED use for other chronic conditions, such as asthma, where an action plan developed with the provider reduced ED use by 20%.23 There is a clear indication to increase rheumatology care capacity. Beyond expanding rheumatology training program positions, engaging healthcare providers, such as primary care and allied health practitioners who are empowered with additional rheumatology expertise, could alleviate critical resource deficits impeding rapid reassessment requests.24 Low health literacy is a known contributor to ED use25; therefore, initial presentation can be reduced by addressing the lack of knowledge about the role and limitations of ED for chronic conditions, and the misconception that rheumatologists should not be contacted for acute care concerns.
Primary care, specialty care, and acute care linkages are critical to deliver appropriate patient care for the presenting concern. To enhance collaboration with primary care providers, tools such as Specialist LINK (a nonurgent telephone line for physicians to contact specialists in real-time in Calgary, Alberta, Canada) can support evidence-based care in the community if the patient is first in contact with primary care. Primary care physicians report this access mechanism to be useful and positively affect the management of their patients.26 Increasing rheumatology content in the training and continuing medical education curricula of ED physicians could increase the knowledge and confidence in assessing patients with IA seeking ED care, which is supported by the emergency medicine field given the morbidity and mortality of inflammatory rheumatic diseases.27 Additionally, the implementation of case managers who assess, plan, facilitate, coordinate, evaluate, and advocate for options and services to meet comprehensive individualized health needs has been shown to reduce ED admissions by 12% to 26%.28-30
Gaps in patient understanding of their assessment and rheumatologist access after an ED visit relate to communication at the time of discharge from the ED. Better discharge planning can reduce return visits and improve outcomes for patients, and ultimately their satisfaction with the healthcare system.31 Patients often still have unmet health needs and concerns upon leaving the ED, which can be mediated by improving communication during and at the end of their visit. This includes relaying the findings of investigations and recommendations to the patient in lay language. Specifically, healthcare providers should ensure that the patient has an understanding of the working diagnosis for the cause of their symptom onset or, if not possible, what next steps are required to work out the root cause, which may be outside of the domain of emergency care provision. Written discharge summaries provided to patients may be an option, as many will be leaving the ED fatigued. It is also critical for the rheumatology and primary care providers to be informed of the patient’s visit to the ED so that appropriate follow-up arrangements are made (Figure).32
Recommendations to reduce avoidable acute care use. ED: emergency department.
Our study is unique in its documentation of the experience of patients with IA conditions interacting with the acute care system. We have located only a single study describing the experience of patients with RA admitted to hospital under nonspecialist care from the prebiologic era.33 More patient experience data are required for health systems to demonstrate responsiveness to concerns and to promote high-quality care environments. However, in our study, we do have consistency in the expectations of patients with IA with those of all-comers to Canadian EDs. In a qualitative study in Ontario, Canada, patients reported wanting to understand the cause and expected trajectory of their symptoms, as well as reassurance, symptom relief, and a plan to manage their symptoms, resolve their issue, or pursue further medical care.34
Limitations of our study include the small number of participants, with half the sample declining to report their demographic data, perhaps due to privacy concerns given the method of recruitment. The balance of responses by biological sex (nearly equal female and male respondents) could reflect the underlying differential prevalence for each disease entity and representation of those diseases by respondents, but this cannot be confirmed. Disease duration is another potential explanatory variable, as persons with longer disease duration may be more experienced in assessing their need for the ED, but this information was not collected. Response rate is relatively low in this study. However, given the timing of the mail distribution of our survey, it is likely that the coronavirus disease 2019 (COVID-19) survey response fatigue contributed, as identified by other health researchers.35 Additionally, the conclusions drawn in this study are all informed by thematic analysis of free-text responses, a qualitative research method. Qualitative research designs yield more profound insights and more substantial content compared to the findings of studies that may involve larger participant numbers. Although we refrain from asserting that our participants fully represent all members of our province or encompass the entire spectrum of expected experiences in all settings, the patterns elucidated in our paper can serve as a valuable guide for informed action. Additionally, nonresponse bias is a known limitation in studies using survey data to examine patient satisfaction36 and may be present in this study, as it is possible that individuals with better health experiences were less likely to respond. This limits the conclusions that can be drawn regarding the generalizability of the study findings. Finally, this study was conducted during the COVID-19 pandemic, which impacted access to ambulatory providers and avoidance of EDs, potentially affecting who responded to the study.
Persons with IA conditions turn to the ED for urgent concerns when their care needs are not met in ambulatory care settings. Their expectations for quality acute healthcare interactions were discordant with their reported experiences. We also identified a gap in care coordination between acute and ambulatory services, whereby patients were often unable to access appropriate care following ED discharge, which may lead them to return to the ED for the same health concern. Whereas some ED use by patients with IA is necessary and inevitable, we present initial recommendations to develop systems and procedures to reduce the need for ED use by patients with IA for concerns that could be addressed in ambulatory care settings.
Footnotes
Funding was received from the Canadian Institutes of Health Research Project Grant Priority Announcement in Patient-Oriented Research (Competition 202109PJK, application no. 474410).
The authors declare no conflicts of interest relevant to this article.
- Accepted for publication May 24, 2024.
- Copyright © 2024 by the Journal of Rheumatology
This is an Open Access article, which permits use, distribution, and reproduction, without modification, provided the original article is correctly cited and is not used for commercial purposes.
