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.
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
Disease Category: Kidney disease
Disease Name: Polycystic kidney disease
Age Range: 18 - 100
Sex: Either
Nature of Intervention: Any
- Consumers (patients)
- Recommendations for outcome measures (measurement/how)
- Other
- Survey
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.