Evidence map›Paper›PMID 42406516›Full record

ArticleKidney3602026

Validation of the Standardized Outcomes in Nephrology-Life Participation Instrument in People with CKD.

Anastasia Hughes, Cameron Burnett, Angela Ju, Yeoungjee Cho, Armando Teixeira-Pinto, Chandana Guha, Martin Howell, David W Johnson, Vanessa Kumar, Fergus J Caskey and 9 more

Abstract readValidation Study
In one paragraph

Article in Kidney360, 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

19 authors.

Anastasia HughesSydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.ORCID 0009-0003-5512-0333
Cameron BurnettDepartment of Kidney and Transplant Services, Princess Alexandra Hospital, Brisbane, Queensland, Australia.ORCID 0000-0002-2799-4397
Angela JuSydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
Yeoungjee ChoDepartment of Kidney and Transplant Services, Princess Alexandra Hospital, Brisbane, Queensland, Australia.ORCID 0000-0002-3502-9837
Armando Teixeira-PintoSydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.ORCID 0000-0002-9389-2516
Chandana GuhaSydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.ORCID 0000-0002-0767-4185
Martin HowellSydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.ORCID 0000-0001-9740-712
David W JohnsonDepartment of Kidney and Transplant Services, Princess Alexandra Hospital, Brisbane, Queensland, Australia.ORCID 0000-0001-5491-3460
Vanessa KumarSydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.ORCID 0009-0001-2000-4354
Fergus J CaskeyBristol Medical School, University of Bristol, Bristol, United Kingdom.ORCID 0000-0002-5199-3925
Jonathan C CraigCollege of Medicine and Public Health, Flinders University, Adelaide, South Australia, Australia.ORCID 0000-0002-2548-4035
Meghan J ElliottDepartment of Medicine, University of Calgary, Calgary, Alberta, Canada.ORCID 0000-0002-5434-2917
Janine FarragherDepartment of Occupational Science and Occupational Therapy, University of Toronto, Toronto, Ontario, Canada.
Sharlene GreenwoodKings College Hospital, NHS Trust, London, United Kingdom.ORCID 0000-0001-9485-4645
Adeera LevinDivision of Nephrology, University of British Columbia, Vancouver, British Colombia, Canada.ORCID 0000-0003-2438-8401
Amanda SluiterSydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.ORCID 0009-0001-3003-4354
Hernan TrimarchiNephrology Service and Kidney Transplant Unit, Hospital Británico de Buenos Aires, Buenos Aires, Argentina.ORCID 0000-0002-6921-4811
Bill WangInternational Society of Nephrology, Patient Liaison Advisory Group, Brussels, Belgium.ORCID 0009-0008-6395-2240
Allison JaureSydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.ORCID 0000-0001-8973-9538

Funding

National Health and Medical Research Council APP1126256National Health and Medical Research Council APP1197324
6 · The paper itself

Abstract

key pointsThe Standardised Outcomes in Nephrology-Life Participation instrument is valid and reliable to use in patients with CKD not yet requiring KRT. Use of the Standardised Outcomes in Nephrology-Life Participation instrument in clinical trials and publication of results will ensure consistency reporting of life participation in trials in people with CKD.

backgroundLife participation has been identified as a critically important core outcome by people with CKD not yet requiring KRT. In this study, we aimed to validate the Standardized Outcomes in Nephrology-Life Participation (SONG-LP) instrument.

methodsA psychometric evaluation of the SONG-LP was conducted in adults with CKD not yet requiring KRT. The instrument includes four equally weighted domains of life participation including leisure, family, work, and social activities, scored on a five-point Likert scale that specifies frequency over a 1-month recall period from never (zero) to always (four) with a range of zero to four possible (calculated as a mean of the four responses). Internal consistency, test-retest reliability, convergent validity, hypothesis testing, and acceptability were assessed.

resultsIn total, 179 participants from 16 countries participated. The SONG-LP instrument demonstrated strong internal consistency (Cronbach α =0.92; 95% confidence interval [CI], 0.89 to 0.94; baseline; McDonald ω =0.93; 95% CI, 0.91 to 0.95; baseline) and strong test-retest reliability over 1 week ( n =165, intraclass correlation coefficient of 0.81; 95% CI, 0.76 to 0.86) with mean scores 2.97±0.91 and 3.07±0.92 at baseline and at week 1, respectively. There was strong positive correlation with the Patient-Reported Outcomes Measurement Information System Ability to Participate in Social Roles and Activities Short Form 8a that assesses a similar construct (0.81; 95% CI, 0.72 to 0.86), and moderate correlation with measures that assess related concepts including Euro Quality of Life-5 Dimension (0.72; 95% CI, 0.63 to 0.79) and Patient-Reported Outcomes Measurement Information System Cognitive Functional Abilities Subset Short Form 4a (0.61; 95% CI, 0.50 to 0.70).

conclusionsThe SONG-LP instrument is a valid, reliable and internally consistent instrument to assess life participation in people with CKD not yet requiring KRT. It can potentially facilitate routine and consistent assessment of life participation in trials and routine clinical care in people with CKD.

Indexed as

Quality of LifeRenal Insufficiency, ChronicAdultAgedFemaleHumansMaleMiddle AgedPsychometricsReproducibility of ResultsSocial ParticipationSurveys and Questionnaireschronic kidney failurechronic renal diseasechronic renal failureCKDclinical trialkidneykidney diseasekidney failurenephrology

Identifiers

PMID42406516
PMCPMC13641526

What OpenQuestion holds

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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.