Evidence map›Paper›PMID 39811258›Full record

ArticleClinical kidney journal2025

Patient-reported outcome measures for life participation in patients with chronic kidney disease: a systematic review.

Anastasia Hughes, Angela Ju, Rosanna Cazzolli, Martin Howell, Fergus J Caskey, Meghan J Elliott, Janine Farragher, Sharlene Greenwood, Adeera Levin, Karine Manera and 7 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Clinical kidney journal, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing 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

4 citing papers in PubMed.

  1. Article
  2. Article
  3. Article
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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

17 authors.

Anastasia HughesSydney School of Public Health, University of Sydney, Sydney, NSW, Australia.ORCID https://orcid.org/0009-0003-5512-0333
Angela JuSydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
Rosanna CazzolliSydney 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
Fergus J CaskeyBristol Medical School, University of Bristol, Bristol, UK.
Meghan J ElliottUniversity of Calgary, Calgary, AB, Canada.
Janine FarragherDepartment of Occupational Science and Occupational Therapy, University of Toronto, Toronto, ON, Canada.ORCID https://orcid.org/0000-0002-3930-2191
Sharlene GreenwoodKing's College Hospital, NHS Trust, London, UK.ORCID https://orcid.org/0000-0001-9485-4645
Adeera LevinDivision of Nephrology, University of British Columbia, Vancouver, BC, Canada.
Karine ManeraSydney School of Public Health, University of Sydney, Sydney, NSW, Australia.ORCID https://orcid.org/0000-0002-0552-6074
Amanda SluiterSydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
Armando Teixeira-PintoSydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
Hernán TrimarchiNephrology Service and Kidney Transplant Unit, Hospital Británico de Buenos Aires, Buenos Aires, Argentina.ORCID https://orcid.org/0000-0002-6921-4811
Bill WangInternational Society of Nephrology, Patient Liaison Advisory Group, Brussels, Belgium.
Chandana GuhaSydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
Rebecca WuSydney School of Public Health, University of Sydney, Sydney, NSW, Australia.
Allison JauréSydney School of Public Health, University of Sydney, Sydney, NSW, Australia.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Background: The symptoms, comorbidities and treatment burden associated with chronic kidney disease (CKD) can be debilitating and limit life participation in patients with CKD not requiring kidney replacement therapy (KRT). The aim of this study was to identify the characteristics, content and psychometric properties of patient-reported outcome measures (PROMs) used to assess life participation in patients with CKD. Methods: We searched MEDLINE, Embase, PsycINFO and CINAHL from database inception to February 2023 for all studies that reported life participation in patients with CKD (stages 1-5 not requiring kidney replacement therapy). We analysed the characteristics, dimensions of life participation and psychometric properties of the measures. Results: From the 114 studies included, 20 (18%) were randomized trials, 3 (3%) were non-randomized trials and 91 (80%) were observational studies. Forty-one different measures were used to assess life participation, of which six (15%) were author-developed measures. Twelve (29%) measures assessed life participation specifically, while 29 (71%) measures assessed broader constructs such as quality of life, which included questions relevant to life participation. The 36-Item Short Form Health Survey (SF-36) and Kidney Disease Quality of Life Short Form (KDQOL-SF) were the most frequently used, in 39 (34%) and 24 (21%) studies, respectively. Many content domains for life participation were assessed, including physical activities (walking, running and sports), social activities, leisure activities, work or study and self-care. None of the measures for life participation were developed specifically for CKD. Four measures (EuroQol 5-dimension 3-level (EQ-5D-3L), Functional Assessment of Cancer Therapy - Anemia, Short Form 6-dimension and Short-From 36-dimension (SF-36)) had validation data collected in patients with CKD. Conclusion: The measures for life participation used in patients with CKD vary in content, with few validated in the CKD population. There is a need for a validated measure to assess life participation in a meaningful and consistent way in all patients with CKD worldwide.

Indexed as

CKDkidney diseaselife participationPROMsPROs

Identifiers

PMID39811258
PMCPMC11730184

What OpenQuestion holds

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LicenceCC BY
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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.