Evidence map›Paper›PMID 35032226›Full record

ArticleJournal of patient-reported outcomes2022

Do patient-reported outcome measures measure up? A qualitative study to examine perceptions and experiences with heart failure proms among diverse, low-income patients.

Jonathan Davis, Kristan Olazo, Maribel Sierra, Michelle E Tarver, Brittany Caldwell, Anindita Saha, Sarah Lisker, Courtney Lyles, Urmimala Sarkar

Open access · goldAbstract read
In one paragraph

Article in Journal of patient-reported outcomes, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing papers in PubMed
1.5field-weighted citation impact, top 18% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

4 citing papers in PubMed, 9 citations in OpenAlex.

  1. A Surgeon's Field Guide to Value-Based Specialty Care.Laryngoscope investigative otolaryngology · 2025
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors at 2 institutions in 1 country.

Jonathan DavisDivision of Cardiology, Department of Medicine, Zuckerberg San Francisco General Hospital, University of California, 1001 Potrero Avenue, 94110, San Francisco, CA, USA.
Kristan OlazoDivision of General Internal Medicine, Department of Medicine, Zuckerberg San Francisco General Hospital, University of California San Francisco, 1001 Potrero Avenue, Building 10, Ward 13, San Francisco, CA, 94110, USA.
Maribel SierraDivision of General Internal Medicine, Department of Medicine, Zuckerberg San Francisco General Hospital, University of California San Francisco, 1001 Potrero Avenue, Building 10, Ward 13, San Francisco, CA, 94110, USA.
Michelle E TarverFood and Drug Administration, Center for Devices and Radiological Health, Silver Spring, MD, USA.
Brittany CaldwellFood and Drug Administration, Center for Devices and Radiological Health, Silver Spring, MD, USA.
Anindita SahaFood and Drug Administration, Center for Devices and Radiological Health, Silver Spring, MD, USA.
Sarah LiskerDivision of General Internal Medicine, Department of Medicine, Zuckerberg San Francisco General Hospital, University of California San Francisco, 1001 Potrero Avenue, Building 10, Ward 13, San Francisco, CA, 94110, USA.
Courtney Lyles *Division of General Internal Medicine, Department of Medicine, Zuckerberg San Francisco General Hospital, University of California San Francisco, 1001 Potrero Avenue, Building 10, Ward 13, San Francisco, CA, 94110, USA.
Urmimala Sarkar *Division of General Internal Medicine, Department of Medicine, Zuckerberg San Francisco General Hospital, University of California San Francisco, 1001 Potrero Avenue, Building 10, Ward 13, San Francisco, CA, 94110, USA. Urmimala.Sarkar@uscf.edu.ORCID http://orcid.org/0000-0003-4213-4405
San Francisco General Hospital · USCenter for Devices and Radiological Health · US

Funding

UCSF-Stanford Center of Excellence in Regulatory Science and InnovationU01FD005978 · FDA · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI ALTMAN, RUSS BIAGIO, GIACOMINI, KATHLEEN M · 2016 to 2025
$34.5M
FDA HHS U01 FD004979FDA HHS U01 FD005978u.s. food and drug administration U01FD004979/U01FD005978
6 · The paper itself

Abstract

backgroundThe Kansas City Cardiomyopathy Questionnaire (KCCQ) is a Patient-Reported Outcome Measure (PROM) used to evaluate the health status of patients with heart failure (HF) but has predominantly been tested in settings serving predominately white, male, and economically well-resourced populations. We sought to examine the acceptability of the shorter version of the KCCQ (KCCQ-12) among racially and ethnically diverse patients receiving care in an urban, safety-net setting.

methodsWe conducted cognitive interviews with a diverse population of patients with heart failure in a safety net system to assess their perceptions of the KCCQ-12. We conducted a thematic analysis of the qualitative data then mapped themes to the Capability, Opportunity, Motivation Model of Behavior framework.

resultsWe interviewed 18 patients with heart failure and found that patients broadly endorsed the concepts of the KCCQ-12 with minor suggestions to improve the instrument's content and appearance. Although patients accepted the KCCQ-12, we found that the instrument did not adequately measure aspects of health care and quality of life that patients identified as being important components of managing their heart failure. Patient-important factors of heart failure management coalesced into three main themes: social support, health care environment, and mental health.

conclusionsPatients from this diverse, low-income, majority non-white population experience unique challenges and circumstances that impact their ability to manage disease. In this study, patients were receptive to the KCCQ-12 as a tool but perceived that it did not adequately capture key health components such as mental health and social relationships that deeply impact their ability to manage HF. Further study on the incorporation of social determinants of health into PROMs could make them more useful tools in evaluating and managing HF in diverse, underserved populations.

Indexed as

Heart failureOutcomes researchQualitative research

Identifiers

PMID35032226
PMCPMC8760874
OpenAlexW4206620644

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.