How English- and Spanish-Preferring Patients With Cancer Decide on Emergency Care

ABSTRACT

Objectives: Despite widespread efforts to reduce emergency department (ED) visits, patients newly diagnosed with cancer often use the ED for commonly anticipated acute care needs. Existing delivery innovations to reduce ED use are underused, and reasons for this are not understood. Patients who recently visited the ED may provide insights into these patterns of care.

Study Design: Qualitative study of semistructured patient interviews from April 2019 to April 2022.

Methods: We interviewed patients diagnosed with cancer within the prior 6 months from the University of Texas Southwestern Medical Center and its academically affiliated but clinically distinct safety-net health system Parkland Health who had recently visited their respective ED. We completed 29 interviews in English and 11 in Spanish, then analyzed the interviews with the constant comparative method.

Results: Nearly all patients were unaware of, but interested in using, 24/7 telephone triage and oncology urgent care clinics. Safety-net patients, especially Spanish-preferring patients, reported less access to outpatient cancer teams. Patients did not weigh symptom severity to decide between sites of care, but insured patients were concerned about the cost of hospital visits. Patients did not look forward to visiting the ED but understood its advantages, and for safety-net patients, the ED was the main way to access physicians. When patients were discharged home, they were relieved not to be hospitalized, and the good clinical experience inadvertently reinforced future ED use.

Conclusions: Even robust education programs for patients with cancer may have difficulty conveying the availability of innovative clinical services. Patient perspectives on avoidable ED visits may differ from policy makers’ definitions.

Am J Manag Care. 2024;30(11):In Press

Takeaway Points

• Despite extensive counseling and quality-certified patient education programs, patients of diverse backgrounds were unaware of, but very interested in using, available clinical innovations to help them avoid emergency department (ED) visits during cancer treatment.
• Patients did not describe weighing the severity of symptoms to decide between different sites of care.
• It is necessary to carefully incorporate patient viewpoints to tailor communications and bridge care disparities, being cognizant of language barriers.
• Although policy makers consider ED home discharges to be avoidable visits, patients found them to be valuable. Good ED care experiences may inadvertently reinforce future ED use.

Unplanned hospital care (emergency department [ED] and inpatient admissions) is recognized as a frequent,^1-3 disruptive,^4-6 highly variable,⁷ and financially burdensome^8-10 aspect of cancer treatment. Adults with cancer are hospitalized from the ED more than 60% of the time,^1,11 resulting in substantial overrepresentation among the inpatient population. Existing quality measures from Medicare track ED home discharges and admissions for potentially avoidable conditions among patients receiving chemotherapy, including vomiting, dehydration, and pain.¹²

Studies have found that patients are loath to “bother” their oncologists with acute concerns, even though they experience uncertainty navigating care for new or worsening symptoms.¹³ Patients also struggle to select the site of care that appropriately matches the severity of their condition.^14-16

Oncology urgent care clinics have shown promise in reducing ED use among adults newly diagnosed with cancer.^17,18 These clinics are staffed by advanced practice providers, who obtain basic laboratory testing and imaging, deliver intravenous therapies, and monitor patients for prolonged periods.^17,19-21 These innovative clinics also are underused.¹⁸ One explanation may be that they are too novel for patients to easily understand. Patients may also have had bad prior experiences with telephone triage or oncology urgent care.

We sought to understand perspectives from adults with cancer who visited the ED. Patients were being treated at 1 of 2 health systems that make up the Harold C. Simmons Comprehensive Cancer Center in Dallas, Texas: University of Texas Southwestern Medical Center (hereafter, University) and Parkland Health (hereafter, Safety Net), the main cancer care provider for the uninsured in Dallas County. Although the health systems share academic affiliation, their clinical operations are distinct. Both have 24/7 clinician phone access and have had oncology urgent care since 2015. During business hours, oncology-dedicated clinicians triage calls and schedule oncology urgent care visits; after hours, generalist clinicians triage calls and can only refer for scheduling the next day. Notably, the University practice is certified by the American Society of Clinical Oncology Quality Oncology Practice Initiative (ASCO QOPI),²² meaning that its patient education efforts are very robust. The Safety Net practice also incorporates patient navigators, literature, and regular counseling throughout treatment.

METHODS

Overview

We used comparative thematic analysis to design semistructured interviews for adults with cancer who visited the ED. We sought to understand decision-making, attitudes, beliefs, and barriers to access that influenced decisions to present to the ED in the context of their ED visit experience. Our initial deductive approach was supplemented by inductive analysis to draw connections among the coded data.

Interview Guide Development

Interview guides were informed by the conceptual model for nonurgent ED use²³ and based on an interview guide for a general ED population.¹⁴ The conceptual model outlines 6 causal pathway factors involved in patients deciding on an ED visit. Interviews covered decision-making, patient education, oncology team communication, and support for self-management.

We sought insights into questions generated by prior work^6,18,24,25: (1) How do prior ED experiences affect ED use after a cancer diagnosis?; (2) Why do patients not use existing phone triage assistance before going to the ED?; (3) Who else do patients rely on for triage help?; (4) Does cancer team communication or a language barrier impact ED decision-making?; and (5) Are patients aware of existing oncology urgent care clinics?

We piloted the interview guide with the Parkland Patient and Family Advisory Council, a group of 12 patients who provided feedback on wording and content.

Participants and Setting

From the electronic health record (EHR) (Epic), we purposively identified patients who visited their respective hospital ED with a nonleukemia²⁶ cancer diagnosis. We narrowed to patients whose initial diagnosis was within 6 months (180 days) and excluded those with dementia or speech difficulty or whose high-severity illness precluded an interview. We sent letters notifying patients of study eligibility, then called EHR-listed phone numbers to complete interviews.

The Safety Net practice serves a large number of non-English–preferring patients (~33%), a plurality of whom prefer Spanish; only 10% of University patients prefer a language other than English.^6,24 More than 70% of Safety Net patients are uninsured or enrolled in Medicaid compared with 15% of University patients.²⁴ English-language interview guides were reviewed to be accessible to those with low literacy and translated using “broadcast Spanish” as a standard so that translations were intelligible to Spanish speakers from different regions.²⁷

Additional details are in the eAppendices (available at ajmc.com): interview guides in eAppendix A (English) and eAppendix B (Spanish), COREQ (Consolidated Criteria for Reporting Qualitative Research) in eAppendix C, coding tree in eAppendix D, and recruitment diagram in eAppendix E.

The study was approved by the University of Texas Southwestern Institutional Review Board (STU-122017-056) and Parkland Office of Research Administration. Participants provided verbal consent. We collected limited patient information to maintain anonymity.

Data Collection

The interviews lasted 30 to 45 minutes and were audio recorded, transcribed, and coded in Excel (Microsoft). Eligible participants were mailed a study information letter to their home address followed by up to 2 telephone calls to complete interviews. Participants received a $20 gift card after completing interviews. We explained that we wished to understand their decision-making surrounding a recent ED visit in the context of their cancer care. Patients were at home and interviewed only once and no others were known to be present during the interviews. Transcripts were not returned to participants for comment, nor did we request feedback on findings. We did not exclude patients if they were hospitalized, and all patients who were hospitalized began their hospital care with an ED arrival.

Analysis

Analysis was guided by the Theoretical Domains Framework (TDF).²⁸ The TDF outlines 14 domains that organize patient behaviors and has been used extensively to understand “behavior change to investigate implementation problems” in health care.²⁸ The lead author (A.S.H.) and associates interviewed (A.B.C., J.P., M.M., N.L., R.T.) and coded (A.O.) the interview transcripts using iterative thematic analysis techniques and the constant comparative method.²⁹ Spanish interviews were conducted by certified team members (A.B.C., M.M.). Field notes were made after each interview. Transcripts were reviewed to identify emergent themes and subthemes and subsequently coded (A.S.H., A.O.) using an integrated (deductive and inductive) code structure.^29,30 Initial coding was conducted as interviews were completed, allowing us to identify when we had reached thematic saturation and no further interviews were needed.³¹ The finalized code structure was applied to all transcripts. We classified responses into the relevant TDF domains, clarifying each constitutive construct of each domain within the context of a recent ED visit. We then inductively analyzed across the patient’s cancer-treating hospital (University or Safety Net) and preferred language (English or Spanish).

COVID-19 Pandemic

Our study overlapped with the onset of the COVID-19 pandemic. We reviewed the interview guide to consider whether any changes were needed, but noted that several questions already presented opportunities to surface pandemic-related impacts (eg, Recent ED Visit #1, 2, 3, 5, 7 and Future Care #4 in eAppendix A). Although we added an analysis between the pre– and post–pandemic onset interviews, we determined that revising the interview guide midway could introduce systematic bias in our data collection and risk impacting our planned analyses by centering participant reactions on pandemic-related questions.

RESULTS

Interviews were conducted between April 2019 and April 2022; of 197 eligible patients, 40 (20%) completed interviews. The 157 participants who did not participate either declined without specifying a reason or did not return voicemail messages.

From April 2019 to February 2020 (pre–COVID-19 pandemic), an initial 13 University patients were interviewed, then another 11 from June 2020 to August 2020. From April 2020 to April 2022, 5 English-preferring and 11 Spanish-preferring Safety Net patients were interviewed to reach saturation within subgroups (treating health system and preferred language). Of the interviewees, 14 of 24 (58%) University and 9 of 16 (56%) Safety Net interviewees were female. See Table 1 for additional demographic and cancer details.

Views on Health

Interviewees described their health and health care use before and after cancer. The vast majority reported “very good” health prior to their diagnosis, with little need for ED care. After cancer diagnosis, interviewees described drastically increased vigilance in monitoring their symptoms. Interviewees described their overall health as going “downhill” or “diminished.” Although we did not prompt about fear, patients described being “more apprehensive” and that this fear directly drove their care seeking: “When an unexpected pain comes up, I have to go to the emergency room” and “I [go to the doctor more often] because I’m afraid.”

Patients reported financial barriers limiting their acute care options, but the specifics differed: A University patient mentioned that “I don’t want to be hospitalized...; it’s expensive, even with insurance,” whereas a Safety Net patient described limited choice in facility: “[I] don’t have a lot of options to go to other places [because of no health insurance].... I wouldn’t even know how to [look for other doctors].”

Triage Resources

University patients contacted their cancer care team for triage advice, with some having the cell phone number of their oncologist. Those with primary care physicians described difficulty reaching them in a timely fashion. Although a few University patients used family members for triage help, they were usually clinicians (“I would probably stick with…my cousin, who’s a doctor,” one said). In contrast, Safety Net patients described little ability to quickly contact their outpatient team; Spanish-preferring Safety Net patients primarily relied on nonclinician family for triage advice.

Despite this, we noted only subtle differences in cancer team communication satisfaction across language. University patients described ample time for education and counseling, and easily getting questions answered. Although Safety Net patients were satisfied with communication from their team, they were not as enthusiastic as the University patients. Spanish-preferring Safety Net patients were similarly polite but noted delays in relaying test results, except when the oncologist spoke Spanish.

When University patients were referred to the ED, this was not a negative experience and did not discourage future triage use. For Safety Net patients, going to the ED was the simplest way to be evaluated by a physician. Across groups, patients were largely unaware of the telephone triage lines. The only Safety Net patient who knew about the triage line had used it before, avoided an ED visit, and was quite pleased with the experience (Safety Net, female, English in Table 2).

Oncology Urgent Care

There was almost no awareness of the oncology urgent care clinics. Where there was recognition, it was vague: “I think they did tell me, but I don’t remember” (Safety Net, female, Spanish). Minor themes included hesitation that their condition was too severe and no after-hours availability. However, patients immediately grasped how these clinics could be useful and were eager to learn how to access them in the future (Table 2).

ED Experiences

We outline inductive findings that included perspectives on future use and ED alternatives in Table 3. First, patients did not describe weighing the severity of their symptoms to judge the appropriate setting for their care. Because all new symptoms were of uncertain but potentially high severity, patient goals were simply to identify and manage the cause of symptoms. University and Safety Net patients largely found that they were seen quickly in the ED and were impressed by this. Although patients perceived that they were seen sooner because they had cancer, they did not perceive that having cancer impacted their likelihood of hospitalization.

However, ED visits were not always streamlined. The University patients who had prolonged ED waits were quite aggrieved, with one saying “[going to the ED] was a mistake…a day from hell.” Other patients outlined negative experiences stemming from the subsequent hospitalization, including childcare lapses, lack of sleep, and the expense despite insurance.

Perspectives on Delivery Innovations

Patients understood that the main benefit of an ED visit was comprehensive evaluation at any hour of the day. Although many patients were excited by the convenience of possibly being treated at home, they seemed bewildered by the idea. Patients consistently noted that their home lacked diagnostic equipment, especially advanced imaging. As far as a window for intervention, we noted that University patients waited minutes to hours before deciding to go to the ED, but Safety Net patients waited 1 to 3 days.

Although patients preferred in-person triage and their personal oncologist as the triaging clinician, they were open to video, telephone, or texting options with a range of clinicians. There were few common concerns surrounding the triage options, but patients across health systems were concerned about the technological expertise needed for video visits, lack of immediate care after a virtual evaluation, and even language literacy required to text (“The truth, I’m gonna be honest with you, [is that] I don’t know how to write,” said one Safety Net, male, Spanish-speaking patient). We also noted a lost opportunity: Patients at both health systems did not receive follow-up calls after the ED visit.

COVID-19 Pandemic

Rather than differences, we found many similarities between interviews straddling pandemic onset. Most notably, prior to the pandemic, patients reported using respiratory masks and concerns about exposure to infectious agents in the ED waiting room as often as they did after the pandemic’s onset. Patients also viewed ED alternatives similarly over time; the primary concern was that they were too sick for a virtual evaluation. We did not detect differences in factors that patients weighed when visiting the ED during the pandemic.

DISCUSSION

Patients who recently visited the ED at a University and a Safety Net health system were not aware of, but were very interested in using, existing telephone triage and oncology urgent care clinics to avoid a future ED visit. We found broad similarities in ED decision-making: Patients understood that it has comprehensive evaluation capabilities, is open 24/7, and for Safety Net patients it was the most direct route to be evaluated by a doctor. Patients were of 2 minds on ED use: No one looked forward to visiting the ED, but when asked about how their ED experience would impact how they seek care in the future, patients were overall impressed by the clinical care and suggested they would strongly consider visiting again.

Patients did not describe weighing the clinical severity of their symptoms to determine the most appropriate setting for care. Patients did not perceive that it was desirable to avoid low-severity ED visits; many were pleased to be discharged home and to avoid a hospital stay.

Although addressing Spanish language needs is front of mind in the Safety Net system, we still identified differences in communication robustness compared with that reported by University patients. It was notable that to Safety Net patients, being evaluated by a physician was synonymous with going to the ED. A stark difference was that some University patients had their oncologist’s personal cell phone number and others relied on clinician family as backup, whereas Safety Net patients primarily relied on nonclinician family for clinical advice.

We are particularly troubled by patients’ lack of awareness of the 24/7 oncology triage lines. The University practice even carries the ASCO QOPI certification, yet patients who had visited the ED continued to describe fear and uncertainty when deciding how to manage new symptoms.

Despite nearly all recent Medicare Oncology Care Model participants listing ED use reduction as a goal,³² including both the Safety Net and the University practices, few provider groups achieved this.³³ Medicare’s Enhancing Oncology Model successor program also requires 24/7 access to care and patient navigation, but our findings suggest that maximizing these services may require additional implementation effort.²⁵

Our study builds on a qualitative study of patients who had visited the ED of a single center.¹³ We note similar findings of fear driving patient decisions. We extend these findings to encompass a diverse group of patients and add that ED decision-making occurs relatively rapidly and is largely built on existing understandings of ED care. Our study provides insight into a finding from the literature that a patient’s ED visit history has strong positive correlation with future ED visits.^24,34,35

It was instructive that after visiting the ED, patients immediately grasped what oncology urgent care clinics offered and how they could be useful. Because patients are scheduled to be seen at these clinics after phone triage, a common point of improvement would be to increase phone triage use. The existing phone lines could bridge disparities that we found in access to clinician advice, and tracking the proportion of ED visits without a preceding triage call would constitute a form of data-driven improvement—2 other requirements of the Enhancing Oncology Model.³⁶

These findings underscore the importance of tailoring communications to the patient’s perspective when educating on acute care management during cancer treatment. Tailoring education messaging around prompts such as “when you are not feeling well and not sure what to do” may be a more memorable way to introduce the triage line.

Finally, we uncovered patient perspectives that complicate policy and health system definitions of avoidable care. It did not even occur to patients that ED home discharges were undesirable. Patients were pleased to avoid the cost and disruption of a hospital admission. One patient noted that much of the existing patient education he received directed him to go to the ED “without calling.” Additionally, because of overall confidence in ED clinical management, these experiences seemed to reinforce the ED as a good option for future acute care.

Limitations

Although we conducted interviews until thematic saturation for English- and Spanish-preferring patients, a very small proportion of University patients prefer Spanish and these patients were not interviewed. Although patients with higher-acuity illness were not interviewed, our aim was to understand use of existing ED alternatives, and lower-acuity ED visits are more important to understand. Interview nonrespondents may have been less receptive to participating due to bad care experiences. However, we captured a wide range of positive, neutral, and negative ED experiences, with the negatives encompassing a range of issues, as noted. It is possible that patients with negative phone triage experiences were less likely to respond, but patients were chiefly unaware of triage lines. Our findings do not reflect patients who were seen in the oncology urgent care clinics. Finally, our interviews straddled the onset of the COVID-19 pandemic. Although we noted mainly similarities in decision-making across the pandemic’s onset, patients who did not visit the ED were not included in our study.

CONCLUSIONS

Despite limited prior ED use, patients newly diagnosed with cancer know what ED care offers, which largely drives their decision-making. Patients viewed the benefits of ED visits differently from policy makers’ goals. Even robust patient education efforts may require further redesign to consider patient perspectives because seemingly straightforward clinical services may be unfamiliar to them. Future work should incorporate a range of patient perspectives to understand this challenging aspect of acute care delivery.

Acknowledgments

The authors are grateful to the patient participants who contributed their time during a tumultuous phase of their life, as well as the Parkland Oncology Patient and Family Advisory Council’s valuable contributions to the interview guide. The authors gratefully acknowledge the research coordination and assistance from Ana Belen Conrado, Bryan Elwood, Nidhish Lokesh, Molly McGuire, Jessica Phillips, Rithwik Terala, Ann Ostrom, Christopher Clark, and Hannah Fullington.

The content is solely the responsibility of the authors and does not necessarily represent the official views of Texas Health Resources, the University of Texas Southwestern Medical Center, the National Institutes of Health, the Agency for Healthcare Research and Quality, or the American Cancer Society. The funders had no role in the design and conduct of the study; collection, management, and analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication.

Author Affiliations: Department of Internal Medicine (ASH, BK, JWS), Peter O’Donnell Jr. School of Public Health (ASH), Harold C. Simmons Comprehensive Cancer Center (ASH, JWS, NS, JVC), and Department of Emergency Medicine (DMC), University of Texas Southwestern Medical Center, Dallas, TX; Department of Medicine, Rutgers Robert Wood Johnson Medical School (EAH), New Brunswick, NJ; Parkland Health (NS, JVC), Dallas, TX; Department of Population Health, University of Kansas School of Medicine (SJCL), Kansas City, KS.

Source of Funding: This work was supported by the Texas Health Resources Clinical Scholars Program, by a National Cancer Institute Cancer Center Support Grant (1P30CA142543), and a Clinician Scientist Development Grant (CSDG-20-023-01-CPHPS) from the American Cancer Society.

Prior Presentation: Portions of this work have been presented at the American Society for Clinical Oncology annual meeting (June 2-6, 2023; Chicago, IL), and the AcademyHealth Annual Research Meeting (June 24-27, 2023; Seattle, WA).

Author Disclosures: The authors report no relationship or financial interest with any entity that would pose a conflict of interest with the subject matter of this article.

Authorship Information: Concept and design (ASH, EAH, NS, SJCL); acquisition of data (ASH); analysis and interpretation of data (ASH, BK, EAH, DMC, JWS, NS, JVC, SJCL); drafting of the manuscript (ASH, BK, EAH, DMC, JVC); critical revision of the manuscript for important intellectual content (ASH, BK, EAH, DMC, JWS, NS, JVC, SJCL); provision of patients or study materials (ASH); obtaining funding (ASH); administrative, technical, or logistic support (JWS); and supervision (EAH, DMC, SJCL).

Address Correspondence to: Arthur S. Hong, MD, MPH, University of Texas Southwestern Medical Center, 5323 Harry Hines Blvd, Dallas, TX 75390-9169. Email: Arthur.Hong@UTSouthwestern.edu.

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