I’m here because I was told to come: a study of cancer patients’ reasons for attending the emergency department

Abstract

Objectives

Patients with cancer are seen frequently in emergency departments (EDs). It has been proposed that many of these visits are preventable, but the patient perspective has not been well-studied.

Methods

We conducted structured interviews with a convenience sample of patients who presented to a single ED with a cancer-related complaint. We asked standardized questions regarding patient predisposing characteristics, enabling factors (e.g., access to support), and perceived need for care. We compared the reported perceived need with the evaluated need by ED healthcare providers. Themes were identified using descriptive content analysis.

Results

Forty-five patients completed interviews, of whom 30 (67%) were admitted to hospital. The most frequent reasons for seeking ED care were pain (includes abdominal) (33%), fever (11%), and weakness (11%). The majority (77%) did not make the decision to go to the ED alone: healthcare providers (40%, most commonly oncologists) and caregivers (36%) were the reported decision-makers in these cases. The majority (73%) felt their ED visit was not preventable. Themes of an alternative oncological setting for tests, improved community services, and both earlier medication management and referral to specialist care were identified from patients who reported their visit was avoidable. Congruence between (patient) perceived need and evaluated need was high (96%).

Conclusions

The minority of patients made the decision to seek ED care by themselves. While the majority did not believe emergency care was avoidable, those who did had cogent suggestions to that end. Patient’s assessments of their own need had high agreement with ED providers’ evaluations.

Appendix

Box E1 Definition of potentially cancer-related emergency department visit

Inclusion criteria: • Active cancer (i.e., not in remission) or metastatic disease, including but not limited to: - Currently undergoing/have undergone cancer treatment such as radiation or chemotherapy in the past 6 weeks - Receiving palliative care - Recent diagnosis of a major cancer* but treatment not yet initiated • Complications/symptoms potentially associated with cancer treatment e.g. nausea/vomiting, fever • Falls potentially associated with symptoms of cancer/cancer treatment such as weakness/dizziness/syncope • Physical or mental decline potentially secondary to cancer disease progression • Worsening/progression of existing cancer symptoms, e.g., abdominal pain • Referral from general practitioner/specialist/oncology clinic for oncological reason Exclusion criteria: • Trauma/injury/mechanical fall • Direct referral to (non-ED) specific physician and/or specialty • Direct admission to hospital with orders • History of non-cancerous tumors (benign tumors) • Cancer being investigated, not yet diagnosed • Cancer in remission • Visit due to reoccurring issue which has been deemed to not be cancer related • Exacerbation of pre-existing non-cancerous comorbidity • Follow-up and/or complication of non-cancer issue • Non-cancerous postoperative/post procedure complications • Patient states, “it feels like [non-cancer issue]” and patient has a history of the same, e.g., “it feels like my gallbladder attacks”

1. *Any cancer excluding skin cancers, but including melanoma

Box E2 Study introduction and structured questionnaire

Hello, my name is ____________and I am the research coordinator at Sunnybrook Health Sciences Centre. I am meeting/speaking with you today because you agreed to be contacted when you visited the emergency room at Sunnybrook Health Sciences Centre recently. A Sunnybrook research team is conducting a study to better understand why patients with cancer go to the emergency room. Specifically, we are interested in understanding the circumstances that led to your emergency room visit on ____________. Over the next 30 minutes I would like to ask you a few questions about yourself, your recent health, and the things that led up to your visit to the emergency room. Your answers will be kept confidential and nothing that we discuss will be shared with anyone other than those who are part of the study team. We will remove any information that identifies you. Your answers will be grouped with those of other people who agreed to take part in this research study. If you have questions about the study you may contact the Principal Investigator, Dr. ____________ at ____________. If you have questions about your rights as a research participant you may contact ____________, Chair of the Sunnybrook Research Ethics Board, ____________. Do you have any questions for me at this point? Are you willing to participate in this study? I would like to record our conversation to make sure I do not miss anything. Once the study is completed all recordings will be erased. Are you willing to have me record our conversation so I do not miss anything?

	Question	Rationale/explanation
The first few questions are about patient health and current treatment:
1	What kind of cancer have you been diagnosed with?	Introductory question, which is meant to establish the disease characteristics of the participants
2	Do you know what stage of cancer you have been diagnosed with?	Assesses patient knowledge of their disease and severity of disease
3	Are you currently receiving chemotherapy? (within the past 4–6 weeks)	These questions are meant to evaluate if recent chemotherapy treatment is a potential contributing factor to the ED visit(s)
	If YES: When was your last treatment?
	If you know the names of the chemotherapy drugs you were given can you please list them for me?
4	Are you currently receiving radiation therapy? (within the past 2 weeks) If YES:	These questions are meant to evaluate if recent radiation therapy is a potential contributing factor to the ED visit(s)
	What part of your body is being treated?
	When was your last treatment?
5	Have you been experiencing any side effects of cancer treatment?	Need factors: perceived need (how individuals experience symptoms of illness, pain, and worries about their health)
	If YES: Which ones have been most troublesome for you to deal with in the 7 days prior to your visit to the ED?
6	If you are currently receiving treatment for your cancer, do you understand how to manage the side effects of treatment?	Assesses patient knowledge of their treatment plan and management of the treatment side effects
	If NO: What aspects are you not clear about?
	The next few questions are about your emergency room visit the other day:
7	What was the main reason for your visit to the emergency room?	Open-ended question meant to evaluate the rationale for the ED visit
8	Why did you decide to go to the emergency room on this day (versus going the week before or waiting another day)?	Open-ended question meant to evaluate the rationale for ED visit
9	Did you decide to go yourself or was it advised by someone else?	Open-ended question meant to explore the rationale for ED visit
	If SOMEONE ELSE: Who advised you to go? (family member, family doctor or doctor’s office, homecare workers, oncology clinic, Telehealth, other)
10	How did you get to the emergency room?	Enabling factors: community (proximity to healthcare access)
11	How long were you in the emergency room?	Patient and caregiver perspective on length of stay in the ED
12	Were you seen by a doctor(s) other than the emergency room doctor? (e.g., cancer doctor)	This question looks into the referral process for specialists in the ED
	If YES: Who were you seen by?
13	Have you visited an emergency room in the last month, i.e., in addition to the visit we are talking about now?	This question obtains a history of recent ED use, not just at Sunnybrook Health Sciences Centre, but in other EDs. Also, assesses rationale for the visit. Is this an ongoing issue?
	If YES: What was the reason for the visit?
14	Is there anything that could have been done before your ED visit that might have prevented you from visiting the ED the other day?	Probe questions try to focus on what made the visit avoidable or not avoidable, as per the patient and their caregiver
	If YES: Can you describe what that would have been (e.g., additional homecare visit, home oxygen, house call, prescription refill)?
	If NO: Why was the visit to the emergency room not preventable?
The next few questions are about the health providers caring for the patient:
15	Do you have a family doctor?	Enabling factors: community (regular source of care)
	If YES: When was your last contact with him/her?
	What was the nature of the contact? (telephone call, house call, office visit)
	When is your next planned visit with him/her?
16	Do you have an oncologist/oncology team currently looking after you?	Enabling factors: community (regular source of care)
	If YES: When was the last contact with the oncologist or team?
	What was the nature of the contact? (phone, house call, clinic visit)
	When is your next planned visit with the oncology team?
17	Are you receiving homecare?	Enabling factors: community (regular source of care)
	If YES: Which services are you receiving?
	When did you last receive these services?
	When is the next planned visit for these services?
18	Do you have a healthcare provider to call 24/7?	Enabling factors: community (healthcare access/regular source of care)
19	Did you get what you needed from your visit to the ED?	This question assesses the patient and caregiver’s expectations about the care they received in the ED
The next few questions are about your current situation:
20	Are you male or female?	Predisposing characteristics: demographic
21	How old are you?	Predisposing characteristics: demographic
22	Do you live with anyone else?	Enabling factors: personal/family
	If YES: What is your relationship to them? (e.g., spouse)
	Are they dependent on you for care?
	Do you depend on them for care?
23	Do you have any financial concerns at this time?	Enabling factors: personal/family (income)
24	Are you currently working?	Predisposing characteristics: social structure (occupation)
25	Is there anything else about your recent health experiences specifically around the emergency room visit that you made the other day that you would like to tell me about?	Predisposing characteristics: health beliefs. Open-ended question, which allows the patient and caregiver to provide narrative about their perspective on their recent experience in the ED
	Thank you for taking the time to speak with me today and share your experiences. Your replies are very important in understanding how care can be made better for people with cancer.	Concluding interview statement