Evidence map›Paper›PMID 39990913›Full record

ArticleKidney international reports2025

Validating the SONG-PKD Pain Instrument, a Core Outcome Measure for Pain in ADPKD.

Rosanna Cazzolli, Angela Ju, Patrizia Natale, Armando Teixeira-Pinto, Martin Howell, Allison Jaure, Ronald D Perrone, Eva Burnette, Niek F Casteleijn, Arlene Chapman and 15 more

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Article in Kidney international reports, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing 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

3 citing papers in PubMed.

  1. Review
  2. Review
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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

25 authors.

Rosanna CazzolliSydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Angela JuSydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Patrizia NataleSydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Armando Teixeira-PintoSydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Martin HowellSydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Allison JaureSydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Ronald D PerroneDivision of Nephrology, Department of Medicine, Tufts Medical Center and Tufts University School of Medicine, Boston, Massachusetts, USA.
Eva BurnetteUnited Kingdom.
Niek F CasteleijnDepartment of Urology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
Arlene ChapmanDepartment of Nephrology, The University of Chicago, Chicago, Illinois, USA.
Jonathan C CraigCollege of Medicine and Public Health, Flinders University, Adelaide, South Australia, Australia.
Sarah EasttyUnited Kingdom.
Ron T GansevoortDepartment of Nephrology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
Tess HarrisPolycystic Kidney Disease International, London, UK.
Marie C HoganDivision of Nephrology and Hypertension, Department of Internal Medicine, Mayo Clinic, Rochester, Minnesota, USA.
Shigeo HorieDepartment of Urology and Department of Advanced Informatics for Genetic Diseases, Juntendo University Graduate School of Medicine, Tokyo, Japan.
Bertrand KnebelmannUniversité de Paris; APHP; Hôpital Universitaire Necker, Service de Nephrologie, Paris, France.
Richard LeeAustralia.
Karine ManeraSydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Reem A MustafaDepartment of Internal Medicine, Division of Nephrology and Hypertension, University of Kansas Medical Center, Kansas City, Kansas, USA.
Richard SandfordAcademic Department of Medical Genetics, University of Cambridge, Cambridge. UK.
Gopala K RanganCentre for Transplant and Renal Research, Westmead Institute for Medical Research, The University of Sydney, Sydney, New South Wales, Australia.
Bénédicte SautenetService de Néphrologie-Hypertension, Dialyses, Transplantation Rénale, Hôpital de Tours, Tours, France.
Andrea K ViecelliAustralasian Kidney Trials Network, University of Queensland, Brisbane, Queensland, Australia.
Yeoungjee ChoAustralasian Kidney Trials Network, University of Queensland, Brisbane, Queensland, Australia.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Introduction: Pain is a critically important outcome in autosomal dominant polycystic kidney disease (ADPKD); however, it is infrequently and inconsistently reported in clinical trials. This study aimed to validate the Standardized Outcomes in Nephrology-Polycystic Kidney Disease (SONG-PKD) Pain measure, which includes 3 items related to pain (frequency, severity, and impact on life participation) measured on a 5-point Likert scale, in adults with ADPKD. Methods: A total of 316 adults with ADPKD from 21 countries participated online. The median (interquartile range) age of participants was 56 (44-66) years, 219 (69%) were female, and 222 (70%) had a university degree or higher. Participants completed a demographic questionnaire, brief medical history, and 4 pain measures at baseline. The pain measures were readministered 2 days later. Internal consistency was evaluated with Cronbach's alpha. Test-retest reliability was assessed using intraclass correlation coefficient (ICC), and convergent validity was assessed using Spearman's rho. Known groups comparisons for patients with or without a history of kidney complications were performed using a Mann-Whitney rank sum test. Results: The SONG-PKD Pain measure demonstrated high internal consistency (0.94, 95% confidence interval [CI]: 0.93-0.95) and test-retest reliability (0.92, 95% CI: 0.90-0.94). There was a high convergence of SONG-PKD Pain with the Brief Pain Inventory-Short Form (BPI-SF; 0.84, 95% CI: 0.80-0.87) and a visual analog scale (VAS; 0.84, 95% CI: 0.81-0.87). There was a significant difference in the median scores of patients with and without a history of complications (4.0 vs. 0.0, Conclusion: SONG-PKD Pain instrument is a brief and simple measure that has demonstrated strong psychometric properties.

Indexed as

core outcomeoutcome measurepainpolycystic kidney diseasepsychometric evaluation

Identifiers

PMID39990913
PMCPMC11843306

What OpenQuestion holds

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Registered trials

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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.