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; Jonathan C. Craig; Sarah Eastty; Ron T. Gansevoort; Tess Harris; Marie C. Hogan; Shigeo Horie; Bertrand Knebelmann; Richard Lee; Karine Manera; Reem A. Mustafa; Richard Sandford; Gopala K. Rangan; Bénédicte Sautenet; Andrea K. Viecelli; Yeoungjee Cho

doi:10.1016/j.ekir.2024.11.015

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, Jonathan C. Craig, Sarah Eastty, Ron T. Gansevoort, Tess Harris, Marie C. Hogan, Shigeo Horie, Bertrand Knebelmann, Richard Lee, Karine Manera, Reem A. MustafaRichard Sandford, Gopala K. Rangan, Bénédicte Sautenet, Andrea K. Viecelli, Yeoungjee Cho

College of Medicine and Public Health

Research output: Contribution to journal › Article › peer-review

2 Citations (Scopus)

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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, P < 0.001).

Conclusion: SONG-PKD Pain instrument is a brief and simple measure that has demonstrated strong psychometric properties.

Original language	English
Pages (from-to)	447-456
Number of pages	10
Journal	Kidney International Reports
Volume	10
Issue number	2
DOIs	https://doi.org/10.1016/j.ekir.2024.11.015
Publication status	Published - Feb 2025

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 3 Good Health and Well-being

Keywords

core outcome
outcome measure
pain
polycystic kidney disease
psychometric evaluation

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Cazzolli, R., Ju, A., Natale, P., Teixeira-Pinto, A., Howell, M., Jaure, A., Perrone, R. D., Burnette, E., Casteleijn, N. F., Chapman, A., Craig, J. C., Eastty, S., Gansevoort, R. T., Harris, T., Hogan, M. C., Horie, S., Knebelmann, B., Lee, R., Manera, K., ... Cho, Y. (2025). Validating the SONG-PKD Pain Instrument, a Core Outcome Measure for Pain in ADPKD. Kidney International Reports, 10(2), 447-456. https://doi.org/10.1016/j.ekir.2024.11.015

@article{bb97690476a9406481d687ed9a46a740,

title = "Validating the SONG-PKD Pain Instrument, a Core Outcome Measure for Pain in ADPKD",

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, P < 0.001). Conclusion: SONG-PKD Pain instrument is a brief and simple measure that has demonstrated strong psychometric properties.",

keywords = "core outcome, outcome measure, pain, polycystic kidney disease, psychometric evaluation",

author = "Rosanna Cazzolli and Angela Ju and Patrizia Natale and Armando Teixeira-Pinto and Martin Howell and Allison Jaure and Perrone, {Ronald D.} and Eva Burnette and Casteleijn, {Niek F.} and Arlene Chapman and Craig, {Jonathan C.} and Sarah Eastty and Gansevoort, {Ron T.} and Tess Harris and Hogan, {Marie C.} and Shigeo Horie and Bertrand Knebelmann and Richard Lee and Karine Manera and Mustafa, {Reem A.} and Richard Sandford and Rangan, {Gopala K.} and B{\'e}n{\'e}dicte Sautenet and Viecelli, {Andrea K.} and Yeoungjee Cho",

year = "2025",

month = feb,

doi = "10.1016/j.ekir.2024.11.015",

language = "English",

volume = "10",

pages = "447--456",

journal = "Kidney International Reports",

issn = "2468-0249",

publisher = "Elsevier Inc.",

number = "2",

}

Cazzolli, R, Ju, A, Natale, P, Teixeira-Pinto, A, Howell, M, Jaure, A, Perrone, RD, Burnette, E, Casteleijn, NF, Chapman, A, Craig, JC, Eastty, S, Gansevoort, RT, Harris, T, Hogan, MC, Horie, S, Knebelmann, B, Lee, R, Manera, K, Mustafa, RA, Sandford, R, Rangan, GK, Sautenet, B, Viecelli, AK & Cho, Y 2025, 'Validating the SONG-PKD Pain Instrument, a Core Outcome Measure for Pain in ADPKD', Kidney International Reports, vol. 10, no. 2, pp. 447-456. https://doi.org/10.1016/j.ekir.2024.11.015

TY - JOUR

T1 - Validating the SONG-PKD Pain Instrument, a Core Outcome Measure for Pain in ADPKD

AU - Cazzolli, Rosanna

AU - Ju, Angela

AU - Natale, Patrizia

AU - Teixeira-Pinto, Armando

AU - Howell, Martin

AU - Jaure, Allison

AU - Perrone, Ronald D.

AU - Burnette, Eva

AU - Casteleijn, Niek F.

AU - Chapman, Arlene

AU - Craig, Jonathan C.

AU - Eastty, Sarah

AU - Gansevoort, Ron T.

AU - Harris, Tess

AU - Hogan, Marie C.

AU - Horie, Shigeo

AU - Knebelmann, Bertrand

AU - Lee, Richard

AU - Manera, Karine

AU - Mustafa, Reem A.

AU - Sandford, Richard

AU - Rangan, Gopala K.

AU - Sautenet, Bénédicte

AU - Viecelli, Andrea K.

AU - Cho, Yeoungjee

PY - 2025/2

Y1 - 2025/2

N2 - 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, P < 0.001). Conclusion: SONG-PKD Pain instrument is a brief and simple measure that has demonstrated strong psychometric properties.

AB - 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, P < 0.001). Conclusion: SONG-PKD Pain instrument is a brief and simple measure that has demonstrated strong psychometric properties.

KW - core outcome

KW - outcome measure

KW - pain

KW - polycystic kidney disease

KW - psychometric evaluation

UR - http://www.scopus.com/inward/record.url?scp=85211105508&partnerID=8YFLogxK

U2 - 10.1016/j.ekir.2024.11.015

DO - 10.1016/j.ekir.2024.11.015

M3 - Article

AN - SCOPUS:85211105508

SN - 2468-0249

VL - 10

SP - 447

EP - 456

JO - Kidney International Reports

JF - Kidney International Reports

IS - 2

ER -

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

Abstract

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Keywords

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