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

Rosanna Cazzolli^{1

2}, Angela Ju^{1

2}, Patrizia Natale^{1

3

4}, Armando Teixeira-Pinto^{1

2}, Martin Howell^{1

2

5}, Allison Jaure^{1

2}, Ronald D Perrone⁶, Eva Burnette⁷, Niek F Casteleijn⁸, Arlene Chapman⁹, Jonathan C Craig¹⁰, Sarah Eastty⁷, Ron T Gansevoort¹¹, Tess Harris¹², Marie C Hogan¹³, Shigeo Horie¹⁴, Bertrand Knebelmann¹⁵, Richard Lee¹⁶, Karine Manera^{1

2}, Reem A Mustafa¹⁷, Richard Sandford¹⁸, Gopala K Rangan^{19

20}, Bénédicte Sautenet^{21

22}, Andrea K Viecelli^{23

24}, Yeoungjee Cho^{23

24

25}

Affiliations

¹ Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
² Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.
³ Department of Precision and Regenerative Medicine and Ionian Area (DIMEPRE-J), University of Bari Aldo Moro, Bari, Italy.
⁴ Nephrology, Dialysis and Transplantation Unit, Department of Medical and Surgical Sciences, University of Foggia, Foggia, Italy.
⁵ Menzies Center for Health Policy and Economics, The University of Sydney, Sydney, New South Wales, Australia.
⁶ Division of Nephrology, Department of Medicine, Tufts Medical Center and Tufts University School of Medicine, Boston, Massachusetts, USA.
⁷ United Kingdom.
⁸ Department of Urology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
⁹ Department of Nephrology, The University of Chicago, Chicago, Illinois, USA.
¹⁰ College of Medicine and Public Health, Flinders University, Adelaide, South Australia, Australia.
¹¹ Department of Nephrology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
¹² Polycystic Kidney Disease International, London, UK.
¹³ Division of Nephrology and Hypertension, Department of Internal Medicine, Mayo Clinic, Rochester, Minnesota, USA.
¹⁴ Department of Urology and Department of Advanced Informatics for Genetic Diseases, Juntendo University Graduate School of Medicine, Tokyo, Japan.
¹⁵ Université de Paris; APHP; Hôpital Universitaire Necker, Service de Nephrologie, Paris, France.
¹⁶ Australia.
¹⁷ Department of Internal Medicine, Division of Nephrology and Hypertension, University of Kansas Medical Center, Kansas City, Kansas, USA.
¹⁸ Academic Department of Medical Genetics, University of Cambridge, Cambridge. UK.
¹⁹ Centre for Transplant and Renal Research, Westmead Institute for Medical Research, The University of Sydney, Sydney, New South Wales, Australia.
²⁰ Department of Renal Medicine, Westmead Hospital, Western Sydney Local Health District, Sydney, New South Wales, Australia.
²¹ Service de Néphrologie-Hypertension, Dialyses, Transplantation Rénale, Hôpital de Tours, Tours, France.
²² Université de Tours, Université de Nantes, INSERM, SPHERE U1246, Tours, France.
²³ Australasian Kidney Trials Network, University of Queensland, Brisbane, Queensland, Australia.
²⁴ Department of Nephrology, Princess Alexandra Hospital, Brisbane, Queensland, Australia.
²⁵ Translational Research Institute, Brisbane, Queensland, Australia.

PMID: 39990913
PMCID: PMC11843306
DOI: 10.1016/j.ekir.2024.11.015

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

Rosanna Cazzolli et al. Kidney Int Rep. 2024.

. 2024 Nov 17;10(2):447-456.

doi: 10.1016/j.ekir.2024.11.015. eCollection 2025 Feb.

Authors

Affiliations

¹ Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
² Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, New South Wales, Australia.
³ Department of Precision and Regenerative Medicine and Ionian Area (DIMEPRE-J), University of Bari Aldo Moro, Bari, Italy.
⁴ Nephrology, Dialysis and Transplantation Unit, Department of Medical and Surgical Sciences, University of Foggia, Foggia, Italy.
⁵ Menzies Center for Health Policy and Economics, The University of Sydney, Sydney, New South Wales, Australia.
⁶ Division of Nephrology, Department of Medicine, Tufts Medical Center and Tufts University School of Medicine, Boston, Massachusetts, USA.
⁷ United Kingdom.
⁸ Department of Urology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
⁹ Department of Nephrology, The University of Chicago, Chicago, Illinois, USA.
¹⁰ College of Medicine and Public Health, Flinders University, Adelaide, South Australia, Australia.
¹¹ Department of Nephrology, University Medical Center Groningen, University of Groningen, Groningen, The Netherlands.
¹² Polycystic Kidney Disease International, London, UK.
¹³ Division of Nephrology and Hypertension, Department of Internal Medicine, Mayo Clinic, Rochester, Minnesota, USA.
¹⁴ Department of Urology and Department of Advanced Informatics for Genetic Diseases, Juntendo University Graduate School of Medicine, Tokyo, Japan.
¹⁵ Université de Paris; APHP; Hôpital Universitaire Necker, Service de Nephrologie, Paris, France.
¹⁶ Australia.
¹⁷ Department of Internal Medicine, Division of Nephrology and Hypertension, University of Kansas Medical Center, Kansas City, Kansas, USA.
¹⁸ Academic Department of Medical Genetics, University of Cambridge, Cambridge. UK.
¹⁹ Centre for Transplant and Renal Research, Westmead Institute for Medical Research, The University of Sydney, Sydney, New South Wales, Australia.
²⁰ Department of Renal Medicine, Westmead Hospital, Western Sydney Local Health District, Sydney, New South Wales, Australia.
²¹ Service de Néphrologie-Hypertension, Dialyses, Transplantation Rénale, Hôpital de Tours, Tours, France.
²² Université de Tours, Université de Nantes, INSERM, SPHERE U1246, Tours, France.
²³ Australasian Kidney Trials Network, University of Queensland, Brisbane, Queensland, Australia.
²⁴ Department of Nephrology, Princess Alexandra Hospital, Brisbane, Queensland, Australia.
²⁵ Translational Research Institute, Brisbane, Queensland, Australia.

PMID: 39990913
PMCID: PMC11843306
DOI: 10.1016/j.ekir.2024.11.015

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.

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Figures

**Figure 1**
The SONG-PKD Pain instrument. SONG-PKD, Standardized Outcomes in Nephrology Polycystic Kidney Disease.

See this image and copyright information in PMC

References

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

Affiliations

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

Authors

Affiliations

Abstract

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References

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