Feasibility Study of Using Electronic Patient-Reported Outcomes to Screen Patients with Advanced Solid Cancers for Palliative Care Needs

Abstract

Background:

Palliative care delivery in oncology is challenging and referral practices vary widely. Standardized, needs-based screening and triage systems are essential to more effectively address patients’ palliative care needs.

Objective:

Assess the feasibility, acceptability, and appropriateness among patients with advanced solid cancers of using electronic patient-reported outcomes (ePROs) to screen for palliative care needs.

Design:

We developed a 13-item ePRO palliative care survey to assess multidimensional palliative care needs and conducted a pilot study (n = 25) of a palliative care screening intervention using ePRO monitoring and presentation of ePRO reports to a multidisciplinary care team. Feasibility was assessed through enrollment, retention, and ePRO adherence rates. Acceptability and appropriateness were evaluated through exit surveys of all participants and semistructured interviews of a subset of participants (n = 10).

Results:

From May 2022 to April 2023, 68% (25/37) of eligible patients consented and enrolled on the ePRO platform. Overall, 96% (22/23; 2 censored for death/hospice) of participants completed the study and 96% of participants met predefined ePRO adherence thresholds. Overall, 84% (21/25) of patients reported a severe response during the study period, of whom 95% (20/21) received supportive services during the study period. Patients found the ePRO palliative survey acceptable and appropriate. Qualitative interviews found patient-identified barriers to the intervention and areas for improvement.

Conclusions:

Screening patients for unmet palliative needs using ePRO monitoring is feasible, acceptable, and appropriate among patients, but more work is needed to understand the perspectives of diverse patients and how to integrate ePRO palliative care screening into clinical workflows.

Key Message

Electronic patient-reported outcomes monitoring to identify palliative care needs coupled with presentation to clinical teams to facilitate palliative care delivery is feasible, acceptable, and appropriate. This approach should be further tested to evaluate the impact on palliative care use and downstream clinical outcomes in future studies.

Introduction

Early palliative care for patients with advanced cancer is an evidence-based practice that improves patient and caregiver outcomes, including patient-reported quality of life (QoL), symptom burden, and mood.^1–6 Patients who receive early palliative care are also more likely to receive high-quality end-of-life care.^1,7 Despite this evidence base, uptake of early palliative care in standard oncology practice has been difficult to implement, partly due to palliative care workforce shortages.⁸ Rapid therapeutic advances in oncology have also changed the disease course of many poor prognosis cancers, effectively outpacing models of early palliative care delivery for patients with metastatic disease.⁹

To address these challenges, the field has shifted toward tailored, patient-centered models of palliative care delivery that are scalable and more resource-efficient.^10,11 These models focus on referring patients based on unmet needs or poor prognostic factors. Studies of automatic or triggered referrals to palliative care based on electronic health record (EHR) data have shown efficacy in increasing referral rates.^12–14 However, these models are limited by low specificity for unmet needs reported directly by patients, high opt-out rates, and potential disengagement of the oncology team with palliative care management.¹⁵ Another promising approach is stepped models of palliative care, in which patients are systematically monitored for unmet needs and palliative care treatment is increased for those who do not benefit from less intensive therapy. Recent data from stepped models of palliative care demonstrate a strong signal for using patient-reported outcomes (PROs) to identify those who require more intensive specialty palliative care.^9,16,17

Remote symptom monitoring (RSM) is an electronic PRO (ePRO) intervention rapidly expanding in oncology practice driven by strong data that patients directly reporting symptoms improves care quality and patient outcomes.^18–23 RSM provides the infrastructure and opportunity to link palliative care screening and service delivery into oncology workflows, yet it has not been well tested for monitoring palliative care needs and facilitating multidisciplinary management.²⁴ Furthermore, it remains unknown how to best deliver patient-reported information to clinicians and use PRO data to navigate patients to palliative care services. We sought to address this knowledge gap by testing a novel PRO screening strategy designed to engage patients and clinical teams in ePRO monitoring of palliative care needs.

In this work, we report the pilot testing of a novel 13-item ePRO palliative care survey developed to screen patients for multidimensional palliative care needs. We assessed feasibility and patient perceptions of acceptability and appropriateness of the intervention, which consisted of ePRO monitoring using the ePRO palliative care survey in combination with RSM and presentation of ePRO reports to a multidisciplinary team to facilitate palliative care.

Methods

Study design, setting, and participants

We conducted a single-arm pilot trial designed to assess the feasibility, acceptability, and appropriateness of ePRO palliative care screening in combination with RSM. From May 9, 2022, through April 18, 2023, we enrolled patients at the University of Texas (UT) Austin breast, gynecological, and gastrointestinal oncology clinics. Eligible patients were adults (≥18 years) with a diagnosis of locally advanced unresectable or metastatic solid cancer, receiving active cancer-directed therapy, and a provider-assessed prognosis of >6 months. Patients were required to complete surveys in English. Those on clinical trials requiring structured symptom reporting were excluded. Patients were not excluded based on prior palliative care receipt.

Trained study staff reviewed patient charts and eligibility weekly with oncology providers before approaching potential participants. Patients provided written informed consent, completed baseline measures, and enrolled on a third-party web-based RSM platform for 12 weeks. Enrollment required baseline PRO survey completion. Time on the study was extended if patients paused for hospitalization. Participants completed study end measures within 30 days of study end. We sought anecdotal feedback from clinic providers and staff at monthly team meetings and adjusted workflows based on their recommendations. We purposively sampled participants (n = 10) for exit interviews to assess the perceived acceptability and appropriateness of the ePRO monitoring intervention. Patients were compensated $50 for study completion and $25 for the end-of-study interview. The study protocol was approved by the UT Austin Institutional Review Board (IRB) and Advarra, the central IRB for the third-party RSM platform.

ePRO palliative care screening intervention

Development

We developed an ePRO item set to screen patients for multidimensional palliative care needs for use with weekly symptom monitoring in ambulatory oncology settings. Using a rigorous, evidence-based approach,^25–31 we identified key domains for ePRO monitoring of palliative care needs in patients with advanced cancer and used expert input from clinicians, researchers, patients, and caregivers to select the final PRO item set (Supplementary Data). Given the screening tool is designed to integrate with RSM workflows, we chose individual PRO items from validated measures and prioritized a short set of items to minimize the survey burden on patients and present data to oncology teams. The process resulted in a 13-item ePRO palliative care screening tool, that in conjunction with standard weekly symptom monitoring, screens for care needs in the following domains: physical symptoms, psychological, social support, spiritual/existential distress, caregiver burden, illness understanding, patient request for palliative care, and physical function (Supplementary Tables S1 and S2).^32–39

Pilot testing

The intervention included monthly ePRO palliative care screening and weekly symptom monitoring, with ePRO reports presented to a multidisciplinary team to facilitate palliative care management. Patients received a brief introduction to palliative care from a trained research coordinator using a study flier and then enrolled on the RSM platform. The ePRO assessment schedule consisted of multidimensional care needs screening with the 13-item ePRO palliative survey on weeks 0, 4, 8, and 12, and symptom monitoring using the PRO version of the Common Terminology Criteria for Adverse Events (PRO-CTCAEs) weekly on weeks 0–12 per emerging standard of care.^18–20,40 The platform generated automated alerts for moderate and severe PRO-CTCAE reports directed to nurse triage. Monthly ePRO palliative surveys were manually reviewed by the study coordinator and PI for severe responses. PRO responses were presented at a weekly interdisciplinary team meeting attended by a palliative care advanced practice provider (APP), oncology APP, psychiatrist, social worker, and dietician. After a lead-in period and feedback from oncology physicians, this process transitioned to secure emails to oncology and palliative care MD/APP teams, highlighting severe responses and changes from prior surveys. PRO responses were managed by oncology and palliative care teams per usual care. We adjusted workflows based on feedback from clinic providers and staff.

Study measures

Sociodemographic and clinical characteristics

Participants completed a baseline survey derived from the PRAPARE assessment tool,³⁶ capturing sociodemographic data and social determinants of health. Age, sex, tumor type, stage, and palliative care receipt were obtained from the EHR.

Quality of life

Participants self-reported QoL at baseline and study end using the Functional Assessment of Cancer Therapy–General (FACT-G), a validated instrument for adults with cancer and a common outcome measure in palliative care studies.^41,42

Feasibility

Feasibility was assessed through (1) enrollment (proportion of eligible patients who enrolled on the ePRO platform), (2) study retention (proportion of patients completing the FACT-G at study end), and (3) ePRO adherence rates.

Acceptability and appropriateness

We administered study end surveys to all participants composed of the Acceptability of Intervention Measure (AIM), Intervention Appropriateness Measure (IAM), and open-ended questions regarding what participants liked or disliked, suggested changes, additional symptoms, and general feedback.⁴³

Statistical analyses

The primary endpoint was feasibility, defined as ≥55% enrollment rate, ≥70% study retention, and ≥70% ePRO survey adherence.^42,44 ePRO palliative survey adherence was defined as completing three of four monthly surveys. PRO-CTCAE survey adherence was defined as completing at least two weekly surveys during each month of study. Feasibility targets considered the serious illness of the patient population. Patients were censored for death or hospice enrollment and considered lost to follow-up if they didn’t complete an ePRO survey for six consecutive weeks.⁴⁵

Qualitative analyses

Semistructured interviews (n = 10) were conducted with purposively sampled study participants aiming for variation in age, sex, ethnicity, race, and tumor type. Guided by Proctor’s Implementation Framework, an interview guide was developed to assess the acceptability and appropriateness of using ePRO monitoring for palliative care needs and elicit feedback on PRO items.⁴⁶ Interviews were conducted by JS in-person or via virtual conferencing software (e.g., Zoom, Microsoft Teams) and lasted approximately 45–60 minutes. All interviews were audio-recorded and transcribed verbatim.

We conducted a rigorous thematic analysis and manually coded all transcripts. A codebook was developed based on open-reading of selected interview transcripts (Supplementary Table S3). The codebook included both a priori and emergent codes.⁴⁵ After finalizing the codebook, two members (C.S. and T.L.K.) of the study team jointly coded a shared selection of transcripts (20% of sample) to evaluate the codebook’s suitability. Coding and evaluating interrater reliability (IRR) were facilitated by NVivo software (Version 12). We used the Kappa coefficient to assess IRR between coders.⁴⁷ After resolving discrepancies through team discussions, we determined IRR to be acceptable and approved the codebook for application to the full study sample (Kappa: mean = 0.79, median = 0.92). An anthropologist (M.K.) and sociologist (D.C.) trained study team members and provided oversight for qualitative methods.

Results

Participant characteristics

Table 1 displays baseline characteristics of the study population (n = 25). Patients had a median age of 54 years (range 29–77) and most were female (68%), married/partnered (72%), insured (84% commercial or Medicare), and well-educated. Overall, 32% of patients self-reported an Eastern Cooperative Oncology Group performance status 2–3. Ten participants were already receiving palliative care, defined as a visit within 120 days of enrollment with a palliative care team member. Baseline mean FACT-G score was 74.7 (standard deviation [SD] 17.5).⁴⁸

Table 1.

Baseline Characteristic of the Study Population

Participant characteristics (N = 25)	N (%)
Age, median (range), years	54 (29–77)
Female	17 (68)
Ethnicity and race
Non-Hispanic White	12 (48)
Non-Hispanic Black	1 (4)
Non-Hispanic multiple races	3 (12)
Hispanic any race	6 (24)
Missing/unknown	3 (12)
Tumor type
Pancreatic	8 (32)
Hepatobiliary	1 (4)
Gastroesophageal	2 (4)
Colorectal	3 (8)
Breast	6 (24)
Gynecological^a	5 (20)
Time from locally advanced/metastatic diagnosis
0–3 months	9 (36)
4–12 months	7 (28)
>12 months	9 (36)
FACT-G, mean (SD)	74.7 (17.9)
ECOG performance status
0	8 (32)
1	9 (36)
2+	8 (32)
Palliative care appointment within last 120 days	10 (40)
Identify as spiritual or religious	15 (60)
Highest level of education completed
High school or GED or less	5 (20)
One or more years college	12 (48)
One or more years postgraduate	8 (32)
Partner status
Never married/partnered	2 (8)
Currently married/partnered	18 (72)
Divorced/separated	5 (20)
Employment status
Working full time	11 (44)
Working part time	2 (8)
Unemployed/unable to work	11 (44)
Missing/unknown	1 (4)
Income
<$75 K	5 (20)
$75 K to <150 K	10 (40)
$150 K+	8 (32)
Declined to answer/unknown	2 (8)
Primary insurance type
Medicare	8 (32)
Commercial	13 (52)
Other	3 (12)
Declined to answer	1 (4)
Fear of losing housing
Yes	2 (8)
No	22 (88)
Missing/unknown	1 (4)
Difficulty affording basic needs
Not hard at all	20 (80)
Somewhat hard	3 (12)
Very hard	2 (8)
Lack of transportation
Kept from medical or nonmedical appointments	2 (8)
No	22 (88)
Declined to answer	1 (4)

Gynecological includes ovarian (1), endometrial (3), and cervical (1).

ECOG, Eastern Cooperative Oncology Group; FACT-G, Functional Assessment of Cancer Therapy–General; SD, standard deviation.

Feasibility

We screened every patient in clinic during the study period (n = 275) to identify 82 patients with locally advanced or metastatic cancer, of whom 37 were eligible for recruitment (Fig. 1). We approached all 37 eligible patients and obtained informed consent from 78% (29/37), of whom 68% (25/37) enrolled on the ePRO platform. The most common reasons for refusal were not enough time and not interested. Overall, 96% (23/24) of patients met predefined ePRO adherence thresholds for both the weekly and monthly PRO surveys, and survey compliance exceeded 83% at all time points in study (Supplementary Figs. S1 and Figs. S2). Study retention was high with 96% (22/23) of patients completing the FACT-G at the study end (mean score 76.3, SD 15.6). Two patients were censored for death or hospice enrollment.

FIG. 1.

CONSORT diagram.

ePRO palliative care survey

Table 2 shows aggregate survey responses to the ePRO palliative care survey (n = 93) and clinically determined thresholds for severe responses. The distribution of patients with severe responses at each survey time point and in aggregate are shown in Figure 2 and Supplementary Figure S3, respectively. 84% (21/25) of patients reported a severe response during the study period, of whom 10 were already established with palliative care and 10 received a new palliative care referral. Of the four patients who never received palliative care during the study, three had no severe responses on the palliative care survey and one had severe responses but declined referral.

FIG. 2.

Severe responses on the ePRO palliative survey. Prevalence of patients with severe responses on the monthly ePRO palliative survey at each survey time point. The figure displays severe responses overall and by domain type to show the volume of alerts and characterize which domains generated alerts. ePRO, electronic patient-reported outcome.

Table 2.

Electronic Patient-Reported Outcome Palliative Care Survey-Level Responses and Severe Response Thresholds

PRO item^a	Responses (N = 93)				Severe responses^b
Social support
How often do you see or talk to people that you care about and feel close to?	<1 × per week	1–5 × per week	>5 × per week	Missing	<1 × per week
	1 (1%)	37 (40%)	55 (59%)	0 (0%)	1 (1%)
Spiritual/existential distress
Please indicate your response as it applies to the past month.	Not at all/a little bit	Somewhat	Quite a bit/very much	Missing	Response 4–5 on 5-point scale
I feel peaceful	15 (16%)	23 (25%)	53 (57%)	2 (2%)	15 (16%)
I know that whatever happens with my illness, things will be okay	15 (16%)	16 (17%)	62 (67%)	0 (0%)	15 (16%)
I have trouble feeling peace of mind	57 (61%)	14 (15%)	9 (10%)	13 (14%)	9 (10%)
My life lacks meaning and purpose	71 (76%)	8 (9%)	3 (3%)	11 (12%)	3 (3%)
Caregiver burden
At times I worry I will be a burden to my family	Not at all/a little bit	Somewhat/quite a bit	Very much	Missing	Response 5 on 5-point scale
At times I worry I will be a burden to my family	45 (48%)	34 (37%)	14 (15%)	0 (0%)	14 (15%)
Illness understanding
How much do your doctors and other health professionals help you understand…	Not at all/not very much	Somewhat	A lot/ a great deal	Missing	Response 4–5 on 5-point scale
If you are getting better or worse	1 (1%)	10 (11%)	76 (82%)	6 (6%)	1 (1%)
The goal of your care	1 (1%)	7 (8%)	83 (89%)	2 (2%)	1 (1%)
What is likely to happen with your cancer	4 (4%)	18 (19%)	67 (72%)	4 (4%)	4 (4%)
How your symptoms may change	7 (8%)	14 (15%)	68 (73%)	4 (4%)	7 (8%)
Palliative care request
I would like to schedule an appointment with the supportive care team […]	Yes	No	Already Receiving	Missing	Response “Yes”
	8 (9%)	42 (45%)	42 (45%)	1 (1%)	8 (9%)
Physical function
Over the past month, I would generally rate my activity as:	ECOG 0–1	ECOG 2–3	ECOG 4	Missing	ECOG 4
Over the past month, I would generally rate my activity as:	71 (76%)	22 (24%)	0 (0%)	0 (0%)	0 (0%)
To what extent are you able to carry out your everyday physical activities such as walking, climbing stairs, carrying grcoeries, or moving a chair?	Completely/Mostly	Moderately/A little bit	Not at all	Missing	Response 5 on 5-point scale
	64 (69%)	26 (28%)	3 (3%)	0 (0%)	3 (3%)

Bold value signifies severe responses for each PRO item.

PRO items abbreviated for length, see Supplementary Data for full question stem and response options.

Severe response thresholds determined by the research and clinical team prior to study start.

ECOG, Eastern Cooperative Oncology Group; PRO, patient-reported outcome.

Clinical team anecdotal feedback

Oncology providers reported that the ePRO palliative survey provided new information about patients’ unmet needs and the survey facilitated palliative care for patients, predominantly if a patient requested services using the ePRO survey. Palliative care providers reported the survey was useful for screening patients for care needs at the interdisciplinary team meeting as the clinical volume increased. Oncology physicians expressed difficulty reviewing the ePRO palliative survey responses and recommended integration into the EHR with visual displays prior to routine clinical implementation.

Acceptability and appropriateness

Exit surveys

Supplementary Table S4 presents responses to the AIM and IAM surveys (n = 23). Mean acceptability scores were 3.92 (range: 3.25–5) and appropriateness scores were 4.26 (range: 3.25–5) out of best possible score 5. Patients gave more neutral ratings for acceptability compared with appropriateness, particularly for the responses “I like the symptom survey” (35% neither agree/disagree) and “the symptom survey is appealing to me” (39% neither agree/disagree). Patients indicated they would like an open-ended question allowing them to report “anything else you would like your care team to know” to allow for further open-ended communication with the oncology team during treatment.

Patient interviews

Overall, 77% (17/22) of patients who completed the study consented to an exit interview, of whom 10 patients were purposively sampled. Table 3 presents acceptability and appropriateness themes regarding ePRO monitoring of palliative care needs with representative quotes. Comments illustrate the survey’s effectiveness in encouraging participants to reflect on their needs during treatment, plan for the future, and foster a sense of connection with the oncology team. Patients underscored the survey’s effectiveness in normalizing the serious illness experience and introducing the concept of palliative care. Some participants reported that they found it confusing to receive an additional survey monthly and suggested better clarification of the survey schedule at the start of the intervention. Table 4 presents patient perspectives on barriers to the intervention and suggestions for improvement. Comments illustrate the challenges some participants faced with certain survey questions, particularly those related to the unpredictability of treatment outcomes, a lack of understanding about palliative care, and the relevance of questions to their personal treatment experience. Some patients did not understand how their responses were used by the care team. Participants also discussed the importance of customization to improve the survey experience.

Table 3.

Acceptability and Appropriateness Themes Regarding Electronic Patient-Reported Outcome Monitoring of Palliative Care Needs

Theme	Representative quotes
Acceptability
Encourages self-reflection	“I think for me, it was kind of an eye opener to what was really actually going on with me, and that this is real, what’s happening. And the burden to my family is just because it makes me think about, who’s going to take care of me? I’m divorced. I don’t have kids. I just have my parents, my friends so that’s a big one” “I think that the questions concerning spiritual well-being were really […] They made you be a little more reflective and I think that that’s something that I don’t do very well.”
Facilitates communication and connectedness	“I think overall the most important thing was that there was a human behind it and that’s a big deal for people. You want to feel that connection, especially like the trauma of going through cancer on top of going through it and during the pandemic, there’s a lot of isolation. […] [W]ith this survey, there was always somebody there to be like, are you okay? Which is so, so helpful.”
Frequency of assessments	“I think around [once] a month is good. I think like we said, if it was someone who’s a more active treatment, maybe every two weeks. But other than that, I think anything longer would make it really hard for people to remember.”“I think the whole [monthly] survey was helpful because it made me actually think a little bit about how I was feeling, which when you’re busy and doing a lot is easy just to keep trucking. So in that respect, it was useful.”
Comfort with topics/content	“No, I don’t think [I would remove any spiritual/existential distress questions] and I like that it’s like a scale. It’s not like, do you feel peaceful? Yes or no? You can say like sometimes I do, sometimes I don’t, so I like that.” “I would recommend it to cancer patients. […] It benefits patients to get outside of themselves occasionally and see, oh, I’ve got to think about what this, what my family might think and I got to think about the spiritual and emotional aspect of this and I think that’s a good thing.” “I feel like the way they are written, they are detailed enough to target what I particularly might need and other people as well. Asking me the question of what’s likely to happen with my cancer or how my symptoms may change, I didn’t necessarily think of that before.”
Appropriateness
Introduces palliative care	“I feel like they were all pretty much applied to what was going on at the time. Even like the last questions again, this is like, would you like to meet with the palliative care team? It’s like, not only are they asking like all these questions to make sure everything’s good, once again, they’re giving you that option, like do you need more than what the survey is providing? Like you need to talk to the person? So that was really cool.” “Some of that palliative care [questions] helped me understand some things. Oh, just in general have a more understanding of the whole situation and surveys seem to help.”
Usefulness in planning for the future	“I don’t think I’m there yet [needing palliative care]. But it was good to know that it could be a discussion with my oncologist if I wanted to. And that, that’s where the resources would start if I needed.”
Normalization of patient experience	“And it also validated that I’m having these things and okay, it’s kind of normal for where I’m at, because I think I’m stronger. I can do this. I can go up and down all these stairs, and I can carry these groceries and I got this. But I think it validated that when it was happening and becoming a burden, okay, that’s supposed to be happening. Which was helpful to me to know that I’m not crazy.”
Compatibility and fit	“I think they applied to me very well, because these were the things that I was feeling from one week to the next, to the next. I think they applied. Yeah […] I think it was pretty thorough as far as how you’re doing, how’s the treatment going.” “I think just that check in with yourself weekly and then monthly is just invaluable. It just takes 5 to 7 minutes to really look back and go how am I feeling? So that for me when I’m so busy and there’s so much going on was extremely useful.”
Relevance	“I liked that it specifically says at times I worry I will be a burden to my family because that is so huge in my mind.” I like this one where we’re talking about social and emotional health and it says, how often are you able to see or talk to people you care about and feel close to? Like I have a really good, I have two really awesome friends that I was able to check in with regularly, and even when I wasn’t feeling great, like, one of my friends would just come over and be like, okay, well, we’re going to veg out on the couch together and this is a bad chemo day, we’re doing it together. And that was really cool and it’s important to think about that.” “Yeah. There was one of them that I thought was actually pretty good; […] it’s a social and emotional health question, the first one, how often do you see or talk to people that you care about and feel close to? And then, [palliative care question] you go through the examples of supportive, I think that’s really important. […] The medical team is supposed to be focused on the medical issues, and yes, maybe you have a support team like we do, but not all patients do.”

Table 4.

Patient Perspectives on Barriers to and Areas of Improvement for the Intervention

Theme	Representative quotes
Discomfort with questions	“So there’s a question that says patients with cancer often face uncertainties. And I did not like that question because […] nobody can tell you when you’re going through chemo if you’re getting better or worse, there’s no way to know really if it’s working or not until it’s done. […] So there’s a lot of uncertainty in there. And so having to think about that uncertainty every time I filled this out I did not love.” “[…] [W]hen you can’t take care of yourself or when you’re constantly going to the hospital or constantly in treatment, you do feel like a burden to others and you just wonder like, what is my purpose right now? Like how am I contributing at all to society or to my relationships with others and if I’m just sick all the time? So that one [spiritual/existential distress question] was a heavy one as well.”
Clinical response to survey not clearly understood	“I think just as I said, understanding what happens if you enter one of the survey questions. So for example, if you say very much to my life lacks meaning and purpose, what happens with that? It wasn’t very clear where the information went and is someone just putting it into a spreadsheet and saying patient X feels this and it’s changed that, or is someone also looking at it going, Okay, we need to reach out to that person because twice in a row now they’ve answered that their life lacks meaning and purpose and that’s a big red flag. I think just understanding that would be useful.”
Limited prior knowledge of palliative care	“I don’t know what the palliative and I guess the question about the palliative care is that I don’t know what that means.” “Maybe because I didn’t know about palliative care before this, if you explain what palliative care was.”
End-of-life planning not included in assessment	“Yeah, very appropriate. Even though you could maybe add a question about, I worry about finding a caregiver for end of life […]” “You might consider a question about advanced planning […]That’s one of the things that, with my cancer support group, is one of the things that we talked about a lot, especially in light of losing all the members we lost this year, is what do we want to have happen when we pass? What are the things that we think about? What are the things that we’d like to do for our family or whatever?” “The question I always ask is, how long do I have? I don’t know how you write that down in there, or if that even matters to some people, but I’m sure every cancer patient wonders that.”
Lack of personalization	“Like the other question seem more personal and then [this question about dealing with uncertainty…] I think it would be helpful if it was like a little more narrow or a little more specific, because like saying things like what’s likely to happen with your cancer. Well, the thing about cancer treatment is that like for example, I’ve gone through three lines of care this time.” “I think I can see that they were sort of designed to kind of capture sort of the broad experience and not kind of the specific experiences.”
Experiences vary across patients	“I don’t know how I feel about the ‘my life lacks meaning and purpose [question]’, because maybe I don’t feel that way, but I can see how other people would feel that way, especially the farther you go into treatment. I didn’t hate answering them, but that was probably my least. I felt the least relevant to where I’m at right now.” “Do you feel the need to be more spiritual now that you’ve got a reason to wonder what’s after and it’s a lot closer than it was before. I’m not sure. I think if you’re not spiritual, ‘I know whatever happens with my illness things will be okay’, Is a question that’s pretty difficult for anyone to answer because it’s too small a question for what people feel.” “My worry about the family is not about me being a burden to them but how can I help them?”

Discussion

We developed and pilot-tested an intervention designed to engage oncology and palliative care teams in ePRO monitoring of palliative care needs. We learned that ePRO screening is feasible, as demonstrated by robust enrollment, retention, and adherence rates for the ePRO assessments, and is also appropriate and acceptable to patients. The ePRO assessment schedule, which included weekly symptom monitoring and a monthly palliative care survey, did not add a significant burden to patients, with similar adherence rates for both weekly and monthly ePRO completion. Patients and providers gave positive feedback regarding the intervention, especially regarding its impact on facilitating palliative care needs assessment, communication with the oncology team, and encouraging self-reflection on multidimensional domains of care. However, some patients reported lower acceptability for specific PRO items, particularly questions assessing more sensitive domains. Future research will refine the ePRO palliative care survey with attention to these domains and explore strategies to tailor the depth of assessment to patients’ treatment experiences.

Results from this study contribute to the emerging field of tailored palliative care delivery, in which patients are triaged to receive palliative care based on their reported needs. Recent work from Temel et al. demonstrated that using a decrement in patient-reported QoL scores and disease trajectory to trigger more intensive palliative care was noninferior to standard early palliative care for patients with advanced lung cancer and resulted in fewer palliative care visits.⁹ This study provides evidence for using direct patient reports to guide palliative care intervention. However, implementing a longer QoL measure within ePRO monitoring may be challenging due to its length, particularly for patients with better prognosis cancers who require long-term monitoring. Furthermore, individual PRO item responses may offer more precision and actionable data for clinical management and triage.¹¹

To our knowledge, this is the first study of a multidimensional palliative care needs assessment operationalized with RSM workflows in oncology. Zimmerman et al. have demonstrated the feasibility of triggering automatic palliative care nurse calls based on symptom scores collected at the point of care, with confirmatory results from a larger trial pending.^16,17 Their study uses the Edmonton Symptom Assessment System, which briefly assesses physical symptoms, anxiety, depression, and overall well-being but does not assess multidimensional care needs, such as spiritual/existential distress, caregiver burden, and illness understanding.⁴⁹ The optimal palliative care screening strategy is early in its development, and we expect ePRO screening tools will evolve over time based on many factors, including implementation considerations and advancements in PRO-based measurement of palliative care needs.

There are several advantages to using ePRO monitoring for tailored models of palliative care. First, PRO-based assessment integrates palliative care screening into oncology team workflows and provides a shared system for team-based triage. The oncology team may be able to address the issue for a patient, initiate referral to palliative care for complex cases, or refer to other ancillary services in resource-limited settings. Second, the ePRO survey facilitates patient engagement with palliative care during treatment which may overcome patient barriers to referral. We found in qualitative interviews that the ePRO palliative survey introduced palliative care to patients who had not heard of it before and helped patients anticipate multidimensional care needs that may develop during treatment. Third, ePRO palliative care screening is a resource-efficient solution for long-term monitoring of patients with better prognosis tumor types. As treatment options advance in oncology, patients will have longer and less predictable disease courses, which makes the scalability of longitudinal palliative assessments particularly critical as we build palliative care delivery systems for the future.

Our results contribute important findings to the field of developing scalable PRO-directed referral systems for specialty palliative care. Results from this study highlight the challenges of optimizing a general screening assessment for palliative care needs. Future work will incorporate more extensive supportive care education into the monitoring system to increase patient engagement with palliative care services. Future work should also focus on developing optimal referral systems, which should be tailored to institutional setting, culture, and available resources.

Limitations

There are limitations to this study. First, the pilot trial was conducted in a clinic setting that has a palliative care APP integrated within the care team. Future work should test ePRO palliative care screening in clinic settings with more barriers to palliative care access. Second, we did not formally assess acceptability and appropriateness among providers. Third, the patient population is highly educated and English-speaking, which does not inform use of the PRO item set among more diverse patient populations. Fourth, the sample size is relatively small given the large number screened for enrollment, demonstrating the challenges of recruiting patients with serious illness.

Conclusions

Our pilot results suggest that ePRO palliative care screening is highly feasible. Refining the ePRO survey items and offering customization options could enhance acceptability and support the sustainability of ePRO monitoring for palliative care needs throughout treatment. Further testing in diverse patient populations and clinic settings is needed to determine how best to implement alerts and link severe responses to team-based triage.

Footnotes

Acknowledgments

We are indebted to the patients who participated in the study. We gratefully acknowledge the contributions from the Patient and Family Advisory Council.

Author Disclosure Statement

G.B.R. received research funding from Genentech, Pfizer, and Daiichi Sankyo and consulting fees for Genentech, Pfizer, and Armada. A.M.S. received unrelated research funding from Pfizer Global, Sivan Innovation, and UroGen Pharma, Ltd.

Funding Information

T.L.K. is supported by an American Cancer Society Clinician Scientist Development Grant (CSDG-23-1019130-01-CTPS); G.B.R. receives funding through a National Institute of Nursing Research R01 grant (1R01NR019058-01). M.P. has received funding from the American Cancer Society. A.M.S. was partially supported for this project by the National Center for Advancing Translational Sciences (NCATS), National Institutes of Health, through Grant Award Number UM1TR004406.

Supplementary Material

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