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
N1 - Publisher Copyright:
© 2024 International Society of Nephrology
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 -