Background
Life participation has been identified as a critically important core outcome by people with CKD not yet requiring KRT. In this study, we aimed to validate the Standardized Outcomes in Nephrology–Life Participation (SONG-LP) instrument.
Methods
A psychometric evaluation of the SONG-LP was conducted in adults with CKD not yet requiring KRT. The instrument includes four equally weighted domains of life participation including leisure, family, work, and social activities, scored on a five-point Likert scale that specifies frequency over a 1-month recall period from never (zero) to always (four) with a range of zero to four possible (calculated as a mean of the four responses). Internal consistency, test-retest reliability, convergent validity, hypothesis testing, and acceptability were assessed.
Results
In total, 179 participants from 16 countries participated. The SONG-LP instrument demonstrated strong internal consistency (Cronbach a=0.92; 95% confidence interval [CI], 0.89 to 0.94; baseline; McDonald ?=0.93; 95% CI, 0.91 to 0.95; baseline) and strong test-retest reliability over 1 week (n=165, intraclass correlation coefficient of 0.81; 95% CI, 0.76 to 0.86) with mean scores 2.97±0.91 and 3.07±0.92 at baseline and at week 1, respectively. There was strong positive correlation with the Patient-Reported Outcomes Measurement Information System Ability to Participate in Social Roles and Activities Short Form 8a that assesses a similar construct (0.81; 95% CI, 0.72 to 0.86), and moderate correlation with measures that assess related concepts including Euro Quality of Life-5 Dimension (0.72; 95% CI, 0.63 to 0.79) and Patient-Reported Outcomes Measurement Information System Cognitive Functional Abilities Subset Short Form 4a (0.61; 95% CI, 0.50 to 0.70).
Conclusions
The SONG-LP instrument is a valid, reliable and internally consistent instrument to assess life participation in people with CKD not yet requiring KRT. It can potentially facilitate routine and consistent assessment of life participation in trials and routine clinical care in people with CKD.
Anastasia Hughes, Cameron Burnett, Angela Ju, Yeoungjee Cho, Armando Teixeira-Pinto, Chandana Guha, Martin Howell, David W. Johnson,Vanessa Kumar, Fergus J. Caskey, Jonathan C. Craig, Meghan J. Elliott, Janine Farragher, Sharlene Greenwood, Adeera Levin, Amanda Sluiter, Hernan Trimarchi, Bill Wang, Allison Jaure
Disease Category: Kidney disease
Disease Name: Chronic kidney disease
Age Range: 18 - 120
Sex: Either
Nature of Intervention:
- Consumers (patients)
- Recommendations for outcome measures (measurement/how)
- Other
- Survey
Psychometric evaluation of the Standardized Outcomes in Nephrology–Life Participation (SONG-LP) instrument, with participants completing the SONG-LP alongside other related measures (PROMIS-APS, PROMIS Cognitive Functional Abilities Subset (CF) instrument, PROMIS Emotional Support (ES) instrument, PROMIS Instrument Support (IS) instrument, Euro Quality of Life-5 Dimension 5-Level (EQ-5D-5L) and self-rated kidney function). Psychometric properties of SONG-LP including internal consistency, test-retest reliability, convergent validity, construct validity and acceptability were assessed and compared to other established measures.