Validation of a Core Patient-Reported Outcome Measure for Life Participation in Kidney Transplant Recipients: the SONG Life Participation Instrument

被引：4

作者：

Jaure, Allison ^{[1
,2
,22
]}

Vastani, Rahim T. ^{[1
,2
]}

Teixeira-Pinto, Armando ^{[1
,2
]}

Ju, Angela ^{[1
,2
]}

Craig, Jonathan C. ^{[3
]}

Viecelli, Andrea K. ^{[4
,5
]}

Scholes-Robertson, Nicole ^{[1
,2
]}

Josephson, Michelle A. ^{[6
]}

Ahn, Curie ^{[7
,8
,9
]}

Butt, Zeeshan ^{[10
,11
,12
]}

Caskey, Fergus J. ^{[13
]}

Dobbels, Fabienne ^{[14
]}

Fowler, Kevin ^{[15
]}

Jowsey-Gregoire, Sheila ^{[16
]}

Jha, Vivekanand ^{[17
,18
,19
]}

Tan, Jane C. ^{[20
]}

Sautenet, Benedicte ^{[21
]}

Howell, Martin ^{[1
,2
]}

机构：

[1] Univ Sydney, Sydney Sch Publ Hlth, Sydney, NSW, Australia

[2] Childrens Hosp Westmead, Ctr Kidney Res, Westmead, NSW, Australia

[3] Flinders Univ S Australia, Coll Med & Publ Hlth, Adelaide, SA, Australia

[4] Princess Alexandra Hosp, Dept Nephrol, Brisbane, Australia

[5] Univ Queensland, Fac Med, Brisbane, Australia

[6] Univ Chicago, Dept Med, Sect Nephrol, Chicago, IL USA

[7] Seoul Natl Univ, Coll Med, Transplantat Res Inst, Seoul, South Korea

[8] Seoul Natl Univ, Coll Med, Dept Internal Med, Seoul, South Korea

[9] Seoul Natl Univ Hosp, Transplantat Ctr, Seoul, South Korea

[10] Northwestern Univ, Feinberg Sch Med, Dept Psychiat, Chicago, IL USA

[11] Northwestern Univ, Dept Behav Sci, Feinberg Sch Med, Chicago, IL USA

[12] Phreesia Inc, Wilmington, DE USA

[13] Univ Bristol, Populat Hlth Sci, Bristol Med Sch, Bristol, England

[14] Katholieke Univ Leuven, Dept Publ Hlth & Primary Care, Leuven, Belgium

[15] Voice Patient, St Louis, MO USA

[16] Mayo Clin, Dept Psychiat & Psychol, Rochester, MN USA

[17] Univ New South Wales, George Inst Global Hlth, New Delhi, India

[18] Imperial Coll, Sch Publ Hlth, London, England

[19] Manipal Acad Higher Educ, Prasanna Sch Publ Hlth, Manipal, India

[20] Stanford Univ, Dept Med, Stanford, CA USA

[21] Univ Tours, Fac Med, Tours, France

[22] Childrens Hosp Westmead, Ctr Kidney Res, Westmead, NSW 2145, Australia

来源：

KIDNEY INTERNATIONAL REPORTS | 2024年 / 9卷 / 01期

基金：

澳大利亚国家健康与医学研究理事会; 英国医学研究理事会;

关键词：

core outcomes; kidney transplantation; life participation; patient-centered outcomes; patient-reported outcome measures; quality of life; STANDARDIZED OUTCOMES; HEALTH; DISEASE; MALIGNANCY; GUIDELINE; DOMAINS; TRIALS;

D O I：

10.1016/j.ekir.2023.10.018

中图分类号：

R5 [内科学]; R69 [泌尿科学（泌尿生殖系疾病）];

学科分类号：

1002 ; 100201 ;

摘要：

Introduction: Life participation has been established as a critically important core for trials in kidney transplantation. We aimed to validate a patient-reported outcome measure for life participation in kidney transplant recipients. Methods: A psychometric evaluation of the Standardized Outcomes in Nephrology life participation (SONG-LP) measure was conducted in adult kidney transplant recipients. The measure includes 4 items of life participation (leisure, family, work, and social) each with a 5-point Likert scale. Each item is scored from 0 (never) to 4 (always) and the summary measure score the average of each item. Results: A total of 249 adult kidney transplant recipients from 20 countries participated. The SONG-LP instrument demonstrated internal consistency (Cronbach's a 1/4 0.87; 95% confidence intervals [CI]: 0.83- 0.90, baseline) and test-retest reliability over 1 week (intraclass correlation coefficient of 0.62; 95% CI: 0.54- 0.70). There was moderate to high correlation (0.65; 95% CI: 0.57-0.72) with the PROMIS Ability to Participate in Social Roles and Activities Short Form 8a that assessed a similar construct, and moderate correlation with measures that assessed related concepts (i.e., EQ5D 0.57; 95% CI: 0.49-0.65), PROMIS Cognitive Functional Abilities Subset Short Form 4a (0.40; 95% CI: 0.29-0.50). Conclusion: The SONG-LP instrument is a simple, internally consistent, reliable measure for kidney trans-plant recipients and correlates with similar measures. Routine incorporation in clinical trials will ensure consistent and appropriate assessment of life participation for informed patient-centered decision-making.

引用

页码：87 / 95

页数：9

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