Evidence map›Paper›PMID 35211300›Full record

ArticleClinical kidney journal2022

Establishing a core outcome measure for pain in patients with autosomal dominant polycystic kidney disease: a consensus workshop report.

Patrizia Natale, Ronald D Perrone, Allison Tong, Tess Harris, Elyssa Hannan, Angela Ju, Eva Burnette, Niek F Casteleijn, Arlene Chapman, Sarah Eastty and 21 more

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

Article in Clinical kidney journal, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.

0numbers the graph read from it
0cells of the map it votes in
7citing papers in PubMed
1.4field-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

7 citing papers in PubMed, 9 citations in OpenAlex.

  1. Review
  2. Review
  3. Article
  4. Review
  5. Article
  6. Article
  7. A Step Ahead toward Measuring Pain in Autosomal Dominant Polycystic Kidney Disease (ADPKD).Clinical journal of the American Society of Nephrology : CJASN · 2023
    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

31 authors at 13 institutions in 7 countries.

Patrizia NataleSydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
Ronald D PerroneMedicine, Nephrology, Clinical and Translational Research Center, Tufts Medical Center and Tufts University School of Medicine, Boston, MA, USA.
Allison TongSydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
Tess HarrisPolycystic Kidney Disease International, London, UK.
Elyssa HannanSydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
Angela JuSydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
Eva BurnetteLondon, UK.
Niek F CasteleijnDepartment of Urology, University Medical Centre Groningen, University of Groningen, Groningen, The Netherlands.
Arlene ChapmanDepartment of Nephrology, University of Chicago, Chicago, IL, USA.
Sarah EasttyLondon, UK.
Ron T GansevoortDepartment of Nephrology, University Medical Centre Groningen, University of Groningen, Groningen, The Netherlands.
Marie HoganDepartment of Internal Medicine, Division of Nephrology and Hypertension, Mayo Clinic, Rochester, NY, USA.
Shigeo HorieDepartment of Urology, Juntendo University Graduate School of Medicine, Tokyo, Japan.
Bertrand KnebelmannService de Nephrologie, Université de Paris, APHP, Hôpital Universitaire Necker, Paris, France.
Richard LeeArmidale, NSW, Sydney, Australia.
Reem A MustafaDepartment of Internal Medicine, Division of Nephrology and Hypertension, University of Kansas Medical Centre, Kansas City, KS, USA.
Richard SandfordAcademic Department of Medical Genetics, University of Cambridge, Cambridge, UK.
Amanda BaumgartSydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
Jonathan C CraigCollege of Medicine and Public Health, Flinders University, Adelaide, SA, Australia.
Gopala K RanganCentre for Transplant and Renal Research, Westmead Institute for Medical Research, University of Sydney, Sydney, NSW, Australia.
Bénédicte SautenetService de Néphrologie-Hypertension, Dialyses, Transplantation Rénale, Hôpital de Tours, Tours, France.
Andrea K ViecelliAustralasian Kidney Trials Network, University of Queensland, Brisbane, QLD, Australia.
Noa AmirSydney School of Public Health, University of Sydney, Sydney, NSW, Australia.ORCID https://orcid.org/0000-0003-1632-6462
Nicole EvangelidisSydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
Chandana GuhaSydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
Charlotte LogemanSydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
Karine ManeraSydney School of Public Health, University of Sydney, Sydney, NSW, Australia.ORCID https://orcid.org/0000-0002-0552-6074
Andrea Matus GonzalezSydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
Martin HowellSydney School of Public Health, University of Sydney, Sydney, NSW, Australia.ORCID https://orcid.org/0000-0001-9740-712X
Giovanni F M StrippoliSydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
Yeoungjee ChoAustralasian Kidney Trials Network, University of Queensland, Brisbane, QLD, Australia.
The University of Sydney · AUUniversity Medical Center Groningen · NLFlinders University · AUHôpital Necker-Enfants Malades · FRJuntendo University · JPMayo Clinic · USThe University of Queensland · AUTranslational Research Institute · AUTufts University · USUniversité de Tours · FRUniversity of Cambridge · GBUniversity of Chicago · USUniversity of Kansas Medical Center · US

Funding

Tufts Clinical and Translational Science Institute (Pilot Supplement)UL1TR002544 · NCATS · TUFTS UNIVERSITY BOSTON · PI SELKER, HARRY P. · 2018 to 2022
$50.2M
NCATS NIH HHS UL1 TR002544
6 · The paper itself

Abstract

backgroundPain is the highest prioritized patient-reported outcome in people with autosomal dominant polycystic kidney disease (ADPKD) but remains infrequently and inconsistently measured in clinical trials and poorly managed in clinical settings. A recently completed systematic review of pain in ADPKD identified 26 different outcome measures. None of these measures were considered appropriate as a core outcome measure due to the lack of patient-important dimensions, inadequate content, relatively long duration of completion time and limited evidence to support psychometric robustness.

methodsWe convened an international Standardized Outcomes in Nephrology-Polycystic Kidney Disease consensus workshop involving 21 patients/caregivers and 40 health professionals (clinicians, nurses, researchers, policy makers and industry representatives) from 18 countries to discuss the identification or development of a core outcome measure for pain.

resultsFour themes were identified highlighting fundamental issues for the measurement of pain in ADPKD: distressing and disrupting life participation; variability and ambiguity in defining pain; stigma, frustration and adaptation to pain; and ensuring validity and feasibility of pain measures.

conclusionsExisting measures were found to be insufficient in capturing pain as a core outcome and there was consensus on the need for a new validated measure that is simple, succinct and addresses the impact of pain on life participation. This measure will facilitate the appropriate prioritization of pain in all trials and guide clinical decision making in people with ADPKD.

Indexed as

ADPKDmeasurepainpatient-reported outcomesworkshop

Identifiers

PMID35211300
PMCPMC8862067
OpenAlexW3181649386

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.