Evidence map›Paper›PMID 42465959›Full record

ArticlemedRxiv : the preprint server for health sciences2026

The Patients' Voice in

Javier A Villafuerte-Gálvez, Marco A Noriega, Sena Cakir Colak, Carl V Crawford

Abstract readPreprint
In one paragraph

Article in medRxiv : the preprint server for health sciences, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact
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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

4 authors.

Javier A Villafuerte-GálvezDivision of Gastroenterology, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, USA.ORCID 0000-0002-3379-5271
Marco A NoriegaDivision of Gastroenterology, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, USA.ORCID 0000-0001-5510-9765
Sena Cakir ColakDepartment of Medicine, Mount Auburn Hospital, Harvard Medical School, Cambridge, MA, USA.
Carl V CrawfordDivision of Gastroenterology and Hepatology, Weill Cornell Medicine, New York, NY, USA.ORCID 0000-0001-9490-8877

Funding

Redefining C.difficile patient outcomes through network medicineK23AI177749 · NIAID · BETH ISRAEL DEACONESS MEDICAL CENTER · PI Javier Andres Villafuerte Galvez · 2023 to 2026
$766k
NIAID NIH HHS K23 AI177749
6 · The paper itself

Abstract

Background: Methods: We analyzed 189 testimonials from the Peggy Lillis Foundation corpus, sorted into four cohorts with recurrence ( Results: Treatment trajectory was the dominant theme in recurrent disease, whereas death and near-death dominated non-recurrent fulminant narratives. Psychological burden was near-universal in fulminant disease (98.0% in rfCDI, 97.2% in fCDI). Caregiver and bereavement content concentrated in fCDI (66.7%). Diagnostic failure was frequent across recurrent cohorts (47.6 - 56.1%). Bacteriotherapy tracked recurrence (60.2% rfCDI versus 5.6% fCDI). Financial, mental-health, and caregiver burdens were prominent and are currently unaddressed by guidelines. Human-human reliability was substantial (PABAK 0.79 for semantic fields, 0.76 for domains); arc coding was least reliable. Conclusions: Patient narratives reveal a course-dependent, multidimensional burden in CDI. Concrete gaps exist between what patients prioritize, what guidelines recommend, and what therapy access provides. Frontier-LLM coding, validated against clinicians, offers a reproducible route to translate these priorities into research, care, and policy.

Indexed as

caregiver burdenClostridioides difficile infectionfecal microbiota transplantationlarge language modelspatient-reported outcomesqualitative researchrecurrent infectionthematic analysis

Identifiers

PMID42465959
PMCPMC13370554

What OpenQuestion holds

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LicenceCC BY
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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.