A Remote Symptom Monitoring Tool As Part of Ambulatory Cancer Surgery Recovery: A Qualitative Analysis of Patient Experience

Abstract

PURPOSE

Patients recovering from ambulatory cancer surgery at home may find it difficult to determine whether their postoperative symptoms are normal or potentially serious. We developed the Recovery Tracker to help patients navigate such issues. The Recovery Tracker is a 10-day, web-based electronic survey that monitors symptoms daily and provides feedback as to whether reported symptoms are expected or require follow-up. We sought to examine patient perceptions using this tool.

METHODS

Semistructured interviews were conducted from August 2017 to September 2019 with a convenience sample of patients from a larger randomized controlled trial of the Recovery Tracker. Patients undergoing surgery at an ambulatory cancer center dedicated to the surgical treatment of breast, gynecologic, urologic, head, and neck cancers and benign tumors were included. Thematic analysis was applied to derive key themes and codes via NVivo qualitative analysis software. Recruitment was conducted iteratively until thematic saturation.

RESULTS

Forty-three patients were interviewed. Interview responses were organized into five main themes: (1) The Recovery Tracker led to more seamless communication with the care team; (2) symptoms not expected or not listed on the Recovery Tracker caused stress; (3) the Recovery Tracker was perceived as an extension of care, prompting reflection about symptoms and recovery; (4) Enhanced Feedback provided reassurance and helped set expectations; and (5) the Recovery Tracker was easy to use.

CONCLUSION

The patient experience of electronic symptom monitoring and feedback is congruent with the aims of such monitoring and feedback. Further qualitative research is required in more diverse populations.

The Recovery Tracker is effective in monitoring symptoms at home after ambulatory cancer surgery.

INTRODUCTION

Increasing numbers of complex cancer surgeries are being performed as ambulatory procedures, requiring hospital stays of 1 day or less. However, a shorter hospital stay^1-3 can place additional responsibilities and burdens on patients and caregivers.⁴ In particular, immediate postoperative symptoms occurring at home leave patients and caregivers to determine whether these are expected (normal) symptoms or potentially serious problems necessitating intervention.^5-9

CONTEXT

• Key Objective

• Can an at-home electronic symptom monitoring tool be effective in the ambulatory cancer surgery setting?

• Knowledge Generated

• Patients recovering from ambulatory cancer surgery at home who used our Recovery Tracker—a 10-day electronic survey that monitors symptoms daily and provides feedback on whether reported symptoms are normal or require further follow-up—indicated the following main themes in their qualitative interview responses: (1) The Recovery Tracker led to more seamless communication with the care team; (2) symptoms not expected or not listed on the Recovery Tracker caused stress; (3) the Recovery Tracker was perceived as an extension of care, prompting reflection about symptoms and recovery; (4) Enhanced Feedback provided reassurance and helped set expectations; and (5) the Recovery Tracker was easy to use.

• Relevance

• The Recovery Tracker can be broadly implemented as a safe, efficacious, and cost-effective means of symptom monitoring during at-home recovery after ambulatory cancer surgery.

Patient portals and electronic patient-reported outcome (PRO) symptom monitoring tools have emerged as methods to improve symptom management and remote patient-provider communication.^8,10-12 Programs including acute symptom reporting after surgery, with actionable alerts, demonstrate high patient acceptance and promising results in reducing patient-reported symptom burden and even prolonging survival rates in patients with cancer.^8,10,13-17 Zivanovic et al¹⁵ developed and tested an electronic symptom reporting system at Memorial Sloan Kettering Cancer Center (MSK), demonstrating feasibility and high acceptance among patients undergoing gynecologic cancer surgery.

Gaps remain in our understanding of how to optimally implement and use such tools and research on how patients experience these symptoms in their own words. In a large randomized controlled trial (Ambulatory Cancer Care Electronic Symptom Self-Reporting for Surgical Patients [ACCESS]), MSK researchers used an electronic symptom reporting tool comparing two approaches in the remote management of urgent care visits, patient anxiety, and caregiver burden within 30 days after cancer surgery (Data Supplement [Appendix A], online only).¹⁸ There were no significant differences between the arms in the risk of a potentially avoidable urgent care center visit or readmission.¹⁹ Patients randomly assigned to the Enhanced Feedback arm had less anxiety and fewer nursing phone calls postoperatively. As an extension of this trial, we conducted a qualitative study to describe the patient experience using the symptom monitoring tool, the Recovery Tracker.

METHODS

Study Design

The qualitative study was a component of a larger randomized controlled trial, the ACCESS study, an Institutional Review Board (IRB)–approved low-risk protocol, with a waiver of written informed consent (MSK IRB:17-293; ClinicalTrials.gov identifier: NCT03178045). The ACCESS study compared the impact of two approaches (Team Monitoring v Enhanced Feedback) of the Recovery Tracker survey on remote management of patient-reported symptoms (10 days postoperatively). The Team Monitoring arm is considered standard of care at MSK and assesses symptoms such as redness, nausea, and fever. Responses above thresholds by symptom and length of time postsurgery generate yellow or red alerts to the clinical team.²⁰ For intermediate-level symptoms, a yellow alert is sent to the medical team for assessment. For high-risk symptoms, a red alert is sent to the medical team and an electronic pop-up to patients instructing them to contact their doctor. In the Enhanced Feedback arm, patients received electronic feedback about their symptoms in real time, allowing them to independently evaluate symptom severity and follow-up with their care team as needed. In this arm, nurses were only notified of red alerts. Patients undergoing ambulatory surgery at MSK's Josie Robertson Surgery Center (JRSC)²¹ were invited to participate. The protocol design, methodology, and primary outcomes have been previously described.^18,19

We conducted qualitative patient interviews to examine the impact of ambulatory cancer surgery while using the Recovery Tracker and to provide participants an opportunity to share their experiences in an open-ended format.

Participants

Eligible patients were approached through phone, at outpatient visits, or on the day of surgery by a clinical research coordinator for informed consent before study enrollment. Eligibility criteria included 18 years or older, Internet access, and scheduled surgery at the JRSC.

Convenience samples from both study arms were identified, and patients were invited to participate in one qualitative phone interview. Maximum variation sampling was conducted to ensure viewpoints across symptom severity (ie, number of patient alerts generated by the Recovery Tracker), disease type, sex, and race. The study team attempted to approach 2-3 patients per month for the length of the recruitment period (August 2017 to September 2019). Three patients declined participation because of time constraints.

Interview Methods

The study team of clinicians, experts in qualitative research, former patients, and caregivers collaborated to create a semistructured qualitative interview script containing questions on patient experience, symptom management and expectations, interaction with the Recovery Tracker, and clinical team communication (Data Supplement [Appendix B]). Focus groups of former patients and caregivers helped generate the interview guide, and they reviewed the guide again upon completion. The script contains both close-ended (ie, yes/no) and open-ended questions. A female psychologist experienced in qualitative methods (J.C.) conducted the 30-minute phone interviews. Participants were informed that the goal of the interview was to understand their surgery experience and interaction with the Recovery Tracker. Interviews were recorded and transcribed verbatim. Detailed notes were also taken during the interviews by the colorectal cancer and research project manager.

Analysis of Qualitative Interviews

Core members of the team (ie, research project manager, clinical research coordinator, and patient partners), with inputs from qualitative research experts (J.C., J.A.), conducted content analyses.²² Two team members coded transcripts independently using a line-by-line approach. Transcripts were reviewed in groups of five, and codes were discussed and refined iteratively, establishing intercoder reliability. NVivo qualitative analysis software (QSR International, Burlington, MA) was used to organize and code major and minor themes. Patient partners and other team members reviewed codes and themes via member checking for further verification.²³ Member checking is the process of verifying results iteratively with stakeholders. Revisions were suggested and integrated into the final themes.

RESULTS

Participant Characteristics

Forty-three patients (sampled from the larger study cohort; n = 2,823) agreed to participate. Twenty-two patients were interviewed on postoperative day (POD) 60 (±10) and 21 on POD30 (±10). Twenty-two patients in the Enhanced Feedback arm and 21 in the Team Monitoring arm were interviewed. Participant age ranged from 38 to 75 years; 29 patients (67%) were older than 50 years. Thirty-three (77%) self-identified as White, and 26 (60%) as female (Table 1).

TABLE 1.

Patient Characteristics

Qualitative Interview Analysis

The following five main themes emerged: (1) The Recovery Tracker led to more seamless communication with the care team; (2) symptoms not expected or not listed on the Recovery Tracker caused stress; (3) the Recovery Tracker was perceived as an extension of care, prompting reflection about symptoms and recovery; (4) Enhanced Feedback provided reassurance and helped set expectations; and (5) the Recovery Tracker was easy to use.

Main Theme 1: The Recovery Tracker led to More Seamless Communication with the Care Team

Patients indicated that the care team was easily accessible when they had an issue, especially if they entered the concern in the Recovery Tracker.

“People [at the hospital] responded if I said anything at all [on the Recovery Tracker] …I love the fact that I’m far away and you’re in New York and you’re calling me up and saying, ‘Look, are you alright?’” (Participant 15)

Patients used practical strategies to manage their symptoms, such as taking medication as directed, going to urgent care if necessary, and entering their symptoms on the Recovery Tracker. Patients also discussed the benefit of the Recovery Tracker's prompts to have them call their health care team when necessary.

“…I immediately got a response if I put something that was a flag. One day I put I had a temperature, and I got a call within an hour…” (Participant 8)

Feedback from the Recovery Tracker helped patients contextualize their symptoms and made patients feel like they were not bothering their care team unnecessarily.

“…I’ve had many surgeries at Sloan and never had this before. This is a great tool, because sometimes you don’t know or you don’t want to call and bother. You are writing down what you are feeling and if someone on the other end feels it’s something of concern, they are gonna call you…” (Participant 18)

Main Theme 2: Symptoms not Expected or Not Listed on the Recovery Tracker Caused Stress

The Recovery Tracker identified common symptoms, but some patients experienced symptoms that were not included or viewed as too general. For example, there were no text boxes for patients to provide clarification about different symptoms. This was stressful for some patients, because they did not know if their symptoms were expected or normal.

“…one thing that was confusing was the question that asked about bruising. I always answered ‘no’ to the question, but there was no way to write about the spotting I was having….” (Participant 30)

Although overall symptom burden was reported as low, some patients were surprised by the severity of their symptoms. Even so, the Recovery Tracker provided appropriate communication that patients were recovering normally or triggered calls from the nursing team if symptoms were out of the expected range.

“…I was a little bit surprised by the intensity of the pain, especially in the first week or so…” (Participant 40)

Patients who had undergone breast surgery indicated that their preoperative education did not accurately prepare them for the physical changes, sometimes leading to significant distress. Some patients indicated that they needed additional psychosocial support from MSK after their surgery, but this was not directly related to their actual symptom experience. Additional resources, such as referral to support groups, were made available to patients who triggered red alerts related to the anxiety questions.

“The recovery part has been the difficult part for me…the expectations of what I was supposed to feel and look like are like a 180 of what I thought they were supposed to be…” (Participant 24)

Main Theme 3: The Recovery Tracker was Perceived as an Extension of Care, Prompting Reflection about Symptoms and Recovery

Patients described the Recovery Tracker as a useful tool that prompted them to gauge their symptoms.

“…it forces me to reflect on my own health and, and actually think about…‘am I in pain? …Am I getting better, and can I actually describe getting better?’… And that’s very helpful, because I don’t do that, and that was a good guidance.” (Participant 15)

The Recovery Tracker was also comforting in helping patients understand whether their symptoms were normal or not and reflect whether their recovery was progressing.

“It was something to look forward to in the morning…It was comforting to know I wasn’t checking any of the bad boxes. For example, not checking severe pain the second day even though I did the first day. Seeing symptoms moving to the good side was comforting…” (Participant 8)

Patients also described how the Recovery Tracker made them feel adequately supported, like someone was watching and checking in on them even at home. The prompt response and discussion of symptom management, if needed, were appreciated.

“…you know you’re not alone. It’s like ok, is this all right that I’m feeling this way? …And I knew I was being monitored, so if there was something that was off…they would’ve contacted me and said, ‘Listen this is not ok.’ Or I would’ve gotten a prompt on the computer…that said, ‘You might want to call your doctor’… The fact that you guys were monitoring my recovery made me feel more secure.” (Participant 22)

Main Theme 4: Enhanced Feedback Provided Reassurance and Helped Set Expectations

Twenty-two of the 43 patients interviewed were from the Enhanced Feedback arm.

Patients reported that the Enhanced Feedback helped them understand their symptoms relative to others like them. The Recovery Tracker also provided reassurance and helped set realistic expectations.

“…the one time…it noted that my bruising was worse than most peoples' would be at that particular time. I really appreciated that, and I started looking for that every single day, and it was only that one time when I was out of the norm.” (Participant 27)

Some patients wanted additional context related to their experience and symptoms. Although graphs were shown for bruising, constipation, nausea, swelling, and bruising, more complex graphs and statistics were suggested.

“It would say this amount of pain is normal, which was comforting and reassuring, but I wanted to see a graphical interpretation of how people were reporting pain on days 4, 5, 6. I wanted to see for day 3, 70% of people rated their pain as this…” (Participant 32)

Asymptomatic patients did not receive or did not recall having received Enhanced Feedback.

“I didn’t see any correlation between myself and other patients. I thought it was just more personal about me.” (Participant 43)

Main Theme 5: The Recovery Tracker was Easy to Use

Interaction with the Recovery Tracker was described as an easy-to-use tool. The patient portal in which the survey was housed was described as easy to navigate.

“It was very comfortable, and you’re dealing with a person who hates technology. So, it was very good. It was well done.” (Participant 12)

All patients were asked on a scale of 1-5 how comfortable they were using the technology to complete the survey. All patients interviewed gave a score of 5.

“It has to be a 5, because if it’s a 4, I can’t do it.” (Participant 15)

The daily reminder e-mails were helpful, and many relied on them to complete the survey. Patients suggested the use of text message reminders, as e-mails may not be checked regularly.

DISCUSSION

While most patients in this study recovered well and required minimal postoperative support, patients reported that the Recovery Tracker helped them evaluate their progress and have a greater connection and access to their clinical care team as needed. Although the Enhanced Feedback report further personalized each patient's recovery experience, any review of symptoms and alerts prompting communication were beneficial to patients, regardless of the study arm. The survey tool was also described as easy to use, even as early as POD1 when symptom burden is likely the highest.

In an evaluation of the Recovery Tracker among the larger JRSC patient population, the tool demonstrated cost effectiveness by reducing unnecessary urgent care visits.²⁴ Patients who answered at least one Recovery Tracker survey had a 42% reduced risk of an urgent care visit without readmission.²⁴ The quantitative results of the larger ACCESS trial¹⁹ showed that patients randomly assigned to the Enhanced Feedback arm demonstrated a quicker reduction in anxiety compared with the Team Monitoring arm. The qualitative results of this subsample of patients support that the Recovery Tracker provides reassurance and helps set expectations, but a comparison between arms cannot be made.

Same-day cancer surgery places additional responsibility on patients and caregivers because much of the recovery occurs outside of the hospital setting.⁴ Patients indicated that the Recovery Tracker fostered a real-time connection between themselves and the clinical care team. The patients indicated that the Recovery Tracker, regardless of the study arm, provided them with a sense of control and confidence in managing symptoms. These results were corroborated by a subset of caregivers interviewed for the ACCESS trial who felt the Recovery Tracker provided an additional contact of support for their patient.²⁰ Past studies looking at the feasibility of implementing remote monitoring tools have found high response rates and usability. In a prospective, single-arm pilot study, Cowan et al examined the practicality of collecting PROs for 6 weeks after gynecologic surgery.²⁵ The system was viewed as feasible, and 84% of patients found it helpful in their recovery.^13,25 Another recent study examining a similar system for patients undergoing gastrointestinal cancer surgery demonstrated high engagement, with 66% of surveys answered.²⁶

Our study included patient partners, as well as a group of former patients and caregivers, who participated in study design and implementation and offered feedback regarding qualitative interview questions. At their recommendation, we moved the interview window closer to the day of surgery to reduce potential recall issues, strengthening the quality of our research. Another strength was the inclusion of patients undergoing multiple procedures for treatment across several cancer types—urologic, breast, gynecologic, head and neck, and plastic/reconstructive surgery—broadening the generalizability of our findings. We conducted maximum variation sampling to ensure the sample represented a variety of experiences in the larger cohort.

Our study participants were mostly White. Although our participants did not report any difficulty using the Recovery Tracker, disparities in access to health care, variation in smart mobile device ownership, and health literacy gaps exist.^27-29 Measures to ensure equitable health care access and uptake are needed. Electronic portal access and care management solutions may differ by patient-specific factors, with lower use among racial and ethnic minorities and those with less than a high school education.³⁰ More research with a more diverse sample is warranted to determine whether patient-specific factors (ie, education level, race, and socioeconomic status) affect how patients experience this tool.³⁰ Another limitation is that the standard-of-care Recovery Tracker survey at JRSC, the Team Monitoring arm of the trial, is novel in itself. It is not the standard of care at other institutions, and receiving daily prompts to monitor symptoms is not the standard of care in most postoperative settings. Since both arms of the trial received a symptom monitoring tool, it made it difficult to compare the two arms from a qualitative perspective.

The Recovery Tracker helped establish clearer expectations during the at-home recovery period. Postoperative symptom assessment can be implemented at other institutions using a variety of available resources. Normalizing symptoms and postoperative expectations can be achieved using paper surveys, e-mail surveys, or telephone follow-up by the nursing team.

Participant feedback indicated that the Recovery Tracker was an extension of care that facilitated communication. Patient experience with the Recovery Tracker was consistent with the goals for this symptom management tool. Although PRO tools are not intended to replace face-to-face communication, tools such as the Recovery Tracker are an effective, patient-centric symptom monitoring system after ambulatory cancer surgery and during the recovery process. Providing patients with feedback about their symptoms helps patients set expectations and reflect on their progress. Usability, easy access through the patient portal, and the ability to complete the survey quickly were important to patients. Future studies should build on this work and examine feasibility and patient satisfaction with the user reports in patients receiving different types of treatments (eg, chemotherapy or radiation therapy) and include diverse patient populations.

AUTHOR CONTRIBUTIONS

Conception and design: Taylor M. McCready, Cara Stabile, Jessica S. Ancker, Andrea Pusic, Larissa K.F. Temple, Brett A. Simon, Jeanne Carter

Financial support: Brett A. Simon

Administrative support: Brett A. Simon

Collection and assembly of data: Taylor M. McCready, Cara Stabile, Andrea Pusic, Brett A. Simon, Jeanne Carter

Data analysis and interpretation: Taylor M. McCready, Cara Stabile, Andrew Vickers, Jessica S. Ancker, Andrea Pusic, Brett A. Simon, Jeanne Carter

Manuscript writing: All authors

Final approval of manuscript: All authors

Accountable for all aspects of the work: All authors

AUTHORS' DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST

A Remote Symptom Monitoring Tool As Part of Ambulatory Cancer Surgery Recovery: A Qualitative Analysis of Patient Experience

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