Evidence map›Paper›PMID 33062881›Full record

ArticleJournal of patient experience2020

"I Wish Someone Had Told Me That Could Happen": A Thematic Analysis of Patients' Unexpected Experiences With End-Stage Kidney Disease Treatment.

Nicole DePasquale, Ashley Cabacungan, Patti L Ephraim, LaPricia Lewis-Boyér, Clarissa J Diamantidis, Neil R Powe, L Ebony Boulware

Open access · diamondAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of patient experience, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 10 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
10citing papers in PubMed, 1 pooled it
1.3field-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

10 citing papers in PubMed, 1 synthesis or guideline pooled it, 15 citations in OpenAlex.

  1. Pooled it
  2. Article
  3. Article
  4. Article
  5. Article
  6. Article
  7. Article
  8. Article
  9. Article
  10. Article
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

7 authors at 3 institutions in 1 country.

Nicole DePasqualeDivision of General Internal Medicine, Department of Medicine, Duke University School of Medicine, Durham, NC, USA.ORCID https://orcid.org/0000-0003-2638-0390
Ashley CabacunganDivision of General Internal Medicine, Department of Medicine, Duke University School of Medicine, Durham, NC, USA.
Patti L EphraimDepartment of Epidemiology, Welch Center for Prevention, Epidemiology and Clinical Research, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA.
LaPricia Lewis-BoyérGeneral Internal Medicine & Physical Medicine and Rehabilitation, Welch Center for Prevention, Epidemiology and Clinical Research, Johns Hopkins Bloomberg School of Public Health, Baltimore, MD, USA.
Clarissa J DiamantidisDivision of General Internal Medicine, Department of Medicine, Duke University School of Medicine, Durham, NC, USA.
Neil R PoweSchool of Medicine, University of California at San Francisco, CA, USA.
L Ebony BoulwareDivision of General Internal Medicine, Department of Medicine, Duke University School of Medicine, Durham, NC, USA.
Duke University · USJohns Hopkins University · USUniversity of California, San Francisco · US

Funding

Information and Financial Interventions for Kidney Donation in African AmericansR01DK079682 · NIDDK · JOHNS HOPKINS UNIVERSITY · PI BOULWARE, LEIGH E · 2007 to 2011
$1.3M
NIDDK NIH HHS R01 DK079682
6 · The paper itself

Abstract

backgroundPreparedness regarding prognosis and treatment options enables patients to cope with uncertainties, make value-based treatment decisions, and set treatment goals. Yet, little is known about the expectedness of end-stage kidney disease (ESKD) patients' treatment experiences beyond their desire for better treatment education.

objectiveTo describe unexpected adverse treatment experiences among ESKD patients.

methodThe authors conducted 7 focus groups with 55 dialysis patients and living-donor kidney transplantation recipients receiving medical care in Baltimore, Maryland. Data were analyzed thematically. Themes present in different treatment groups were highlighted to provide insight into common experiences.

resultsThe authors identified 5 themes: (1) psychological reactions, (2) constrained freedom of choice, (3) treatment delivery and logistics, (4) morbidity, and (5) finances.

conclusionPatients were unprepared for nonclinical, logistical, and clinical aspects of ESKD treatment. The need for providers' use of tailored preparatory techniques and the development of pretreatment interventions to help patients know what to expect from and feel psychologically prepared for treatment, particularly with respect to nonclinical implications, is critical. These efforts have great potential to improve patients' treatment experiences.

Indexed as

dialysiskidney diseasepatient perspectivesqualitativetransplantationtreatment experiences

Identifiers

PMID33062881
PMCPMC7534108
OpenAlexW2972187452

What OpenQuestion holds

Textmetadata
LicenceCC BY-NC
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.