Patient perspectives on the completion and use of patient-reported outcome surveys in routine clinical care for heart failure

Patient-reported outcomes (PROs) can be valid, reliable and sensitive measures of patients’ symptoms, function and quality of life ¹ While commonly used in clinical trials, and even as a performance measure of healthcare quality, use of PROs in routine cardiovascular care is rare, despite recommendations for their use.^1,2 A prior study conducted among heart failure (HF) providers beginning to use PROs in routine care revealed a need for the measures to be interpretable, both to providers and patients.³ Patients’ perspectives on PRO collection, however, have not been well studied. We therefore conducted qualitative interviews along with a complementary quantitative survey, among patients with HF completing PROs as part of routine clinical care.

Methods

Deidentified source data from patient questionnaires are available from the corresponding author upon reasonable request. In order to protect subject confidentiality, patient interview data (recordings or transcriptions) will not be shared.

Clinical use of Patient Reported Outcomes

HF clinics at the University of Utah began routinely using of PROs in 2016. Patients completed the Kansas City Cardiomyopathy Questionnaire-12 (KCCQ-12), a Visual Analogue Scale, and four domains (physical function, fatigue, depression, satisfaction with social roles) of the Patient-Reported Outcome Information System (PROMIS) as part of routine clinical care.³

Study Design

We recruited a convenience sample of 24 patients who completed at least one PRO assessment for a quantitative survey and qualitative interview. A study-specific survey was administered to each subject and semi-structured interviews using a field guide were conducted until data saturation was achieved. Interviews were audio-recorded and transcribed verbatim. Surveys and interviews lasted 22–70 minutes and participants received a $25 payment for their time. The study protocol was approved by the Institutional Review Board.

Statistical Analyses

Descriptive statistics were used to describe participants’ demographics and quantitative survey results. Qualitative data were coded and analyzed in ATLAS.ti software, using thematic analysis.⁴ The codebook was created by iteratively developing codes for salient concepts as they emerged during analyses.⁴ Saturation was achieved after 20 interviews.

Results

Quantitative Results

The mean age of patients was 55.5 years (SD = 17.3), 21 were Caucasian, 2 Hispanic/Latino and 12 female. Almost all patients (96%) reported that they were likely or very likely to complete future PROs in clinic. Over a third of patients (37.5%) did not feel that their provider effectively discussed the results of the PROs with them. The full results of the quantitative survey are available from the authors.

Qualitative Findings

The qualitative interviews revealed 3 themes: need to communicate results, survey utility and provider conversation (Table 1). Overall, PROs were deemed by participants as a useful platform for addressing or communicating patients’ health-related concerns and a helpful facilitator of personal reflections. However, some participants expressed uncertainty in PRO utility due to the lack of feedback from providers regarding survey results. More than half the participants recalled one or more conversations with their providers about PROs, with half of these recalling only one such conversation. All participants who had a conversation with their providers felt that their providers understood their responses to the PROs. Importantly, when providers did not discuss the PROs, participants had less certainty of their value.

Table 1.

Qualitative Results of patient interviews

Themes	Explanation	Quotes
Need to communicate results	Uncertainty in PRO utility	“I don’t know if anybody ever looks at them, so that would be the thing. If they—you know, I fill them out, but I don’t know where they go from there.”
		“I don’t know. It’s okay, but one never really gets to any details of specifics in these surveys, so they’re of some value, but I don’t reckon it’s particularly high in value.”
Survey utility	Useful platform for addressing or communicating health-related insights or concerns and a helpful facilitator of personal reflections	“I like the way that it’s formulated, and it looks at your overall health, and you do your grading that way and then it starts to narrow things down. For example, when I do it for the heart failure clinic, the specifics at the end is about how my heart failure is affecting my life… So I personally like it, because it gives you a more cognitive idea of what’s going on in your life as you step away and answer each question, because it does make you kind of think, “How is this affecting me? Can I really walk a mile without being breathless? How about ascending, descending stairs? How is that affecting me?” So it kind of brings-- It’s kind of a review of how your life is being affected by the illness.”
		“It made me think, evaluate my situation and try and sort it out. Sometimes we get so busy that we just keep chugging along and we forget to evaluate where we are. This was a good tool to evaluate where I am and how I feel about it.”
Provider conversation	PRO completion facilitated conversations with provider	“[T]his last time I went, the doctor actually pulled up-- after I had finished the survey, he was able to pull up a program on the computer in the doctor-patient off-room and show me when the questions I answered-- what the normal or the average percentage of questions answered by other people were compared to my answers and kind of how you would say, “Oh, on this question with fatigue, you answered this amount, and this is above average for normal people, so you’re getting good in that category and so on and so on, so.” So it was a little helpful, a little more informative than just taking the survey, and that was it. This last time, he actually brought up the survey and was able to help answer some more questions and diagnosis me better before I left, I guess.”
	At least one or more conversations with providers about PROs; Felt that their providers understood their responses to the PROs	“Yeah. I didn’t even realize that they were-- I would answer them, but until this last time, I didn’t realize that they were even looking through them before they saw me. Excuse me, not the last time, but the second to the last time. Because they mentioned things that I had answered lower than usual, they already knew, and I was surprised. I didn’t know they looked at it that quickly or that they used it for that visit. So that was my first realization that they actually looked-- that the doctor actually looked at them before he saw me that day.”
	Almost half of participants did not recall having a conversation with their provider regarding the PROs	“[I] don’t think he looked at it and said, you know, this person—he gave me my responses on how you’re feeling and how you’re doing and all that, but I wouldn’t say for this survey sort of thing.”
		“I mean, not specifically. Perhaps they looked at them and then asked some questions that were related, but I never sensed that there was a question between what they were saying to me and what the survey said.”

Abbreviation: PRO, Patient Reported Outcomes

Discussion

Despite the importance of improving the patient-centeredness of care, and the growing use of PROs in clinical trials, we are unaware of data describing patients’ perceptions of the use of PROs in routine HF care. We identified 3 themes on the use of PROs in routine clinical care – need to communicate results, survey utility and provider conversation. Patients strongly voiced that they did not understand the value of the PROs when the providers did not use and discuss PRO results. In contrast, when PRO assessments were discussed, patients felt that they were effective in promoting better communications and likely to affect treatment decisions; in turn, underscoring the value of successfully implementing PROs into routine care. When combined with the strong value that the participants reported in a quantitative survey, engaging providers in actively using PROs seems to be a critical step in improving the patient-centeredness of care.

Our findings, in conjunction with the insights of others⁵, suggest that additional provider education on the importance of sharing and discussing the PRO results with patients is needed. Future clinical implementations of PROs should consider the importance of provider education on interpretation and actionability of PRO results—a known barrier to PRO implementation.³

Strengths and Limitations

The key strength of this study is acquisition of patients’ perspectives on PRO use in routine HF care, which supplements our prior qualitative study of providers’ perspectives.³ Limitations include a single-center sample of mostly Caucasian subjects, potentially limiting the study’s generalizability. Although we achieved data saturation, it is possible that other barriers exist.

Conclusions

Patients view PROs as beneficial to their care, but only when the providers discuss and act on the PRO results with patients. Education to make PRO results interpretable and actionable to clinicians, along with education on the importance of sharing PRO results with patients, is likely to maximize the benefit of this patient-centered approach.