Literature DB >> 23772082

Cross-cultural validation of a disease-specific patient-reported outcome measure for systemic lupus erythematosus in Canada.

Josiane Bourré-Tessier1, Ann E Clarke, Rachel A Mikolaitis-Preuss, Mark Kosinski, Sasha Bernatsky, Joel A Block, Meenakshi Jolly.   

Abstract

OBJECTIVE: The LupusPRO, a disease-targeted patient-reported outcome measure, was developed and validated in US patients with systemic lupus erythematosus (SLE). We report the results of the cross-cultural validation study of the English version of the LupusPRO among patients in Canada with SLE.
METHOD: The LupusPRO was administered to English-speaking Canadian patients with SLE. Demographic, clinical, and serological characteristics were obtained, and the Medical Outcomes Study Short Form-36 (SF-36) and LupusPRO were administered. Disease activity was ascertained using the Safety of Estrogens in Lupus Erythematosus National Assessment-Systemic Lupus Erythematosus Disease Activity Index (SELENA-SLEDAI) and the Lupus Foundation of America definition of flare (Yes/No). Damage was assessed using the Systemic Lupus International Collaborating Clinics/American College of Rheumatology Damage Index (SDI). Physician disease activity and damage assessments were also ascertained using visual analog scales. A mail-back LupusPRO form was completed within 2-3 days of the index visit. Items tested were internal consistency reliability (ICR), test-retest reliability (TRT), convergent and discriminant validity (against corresponding domains of the SF-36), criterion validity (against disease activity or health status), and known-groups validity.
RESULTS: Participants were 123 Canadian patients with SLE (94% women); mean age was 47.7 (SD 14.8) years. The median (interquartile range) SELENA-SLEDAI and SDI were 4 (6) and 1 (3), respectively. The ICR of the LupusPRO domains ranged from 0.60 to 0.93, while the TRT range was 0.62-0.95. Measures observed were convergent and discriminant validity with corresponding domains of SF-36, criterion validity, and known-groups validity against disease activity, damage, and health status. Confirmatory factor analysis showed a good fit.
CONCLUSION: The LupusPRO has fair psychometric properties among Canadian patients with SLE, and prospective studies to establish minimally important difference are continuing.

Entities:  

Keywords:  QUALITY OF LIFE; SELF-ASSESSMENT; SYSTEMIC LUPUS ERYTHEMATOSUS

Mesh:

Year:  2013        PMID: 23772082     DOI: 10.3899/jrheum.121129

Source DB:  PubMed          Journal:  J Rheumatol        ISSN: 0315-162X            Impact factor:   4.666


  6 in total

Review 1.  Top 10 recent developments in health-related quality of life in patients with systemic lupus erythematosus.

Authors:  Anisha B Dua; Zahi Touma; Sergio Toloza; Meenakshi Jolly
Journal:  Curr Rheumatol Rep       Date:  2013-12       Impact factor: 4.592

Review 2.  Patient-Reported Outcomes in Systemic Lupus Erythematosus.

Authors:  Mary Mahieu; Susan Yount; Rosalind Ramsey-Goldman
Journal:  Rheum Dis Clin North Am       Date:  2016-03-17       Impact factor: 2.670

3.  Sex Differences in Quality of Life in Patients With Systemic Lupus Erythematosus.

Authors:  Meenakshi Jolly; Winston Sequeira; Joel A Block; Sergio Toloza; Ana Bertoli; Ivanna Blazevic; Luis M Vila; Ioana Moldovan; Karina D Torralba; Davide Mazzoni; Elvira Cicognani; Sarfaraz Hasni; Berna Goker; Seminur Haznedaroglu; Josiane Bourre-Tessier; Sandra V Navarra; Chi Chiu Mok; Michael Weisman; Ann E Clarke; Daniel Wallace; Graciela Alarcón
Journal:  Arthritis Care Res (Hoboken)       Date:  2018-12-20       Impact factor: 4.794

4.  Patient-reported outcome measures in a population of medically indigent patients with systemic lupus erythematosus in Puerto Rico.

Authors:  Diana V Rodríguez-Rivera; Yerania Rodríguez-Navedo; Mariely Nieves-Plaza; Luis M Vilá
Journal:  SAGE Open Med       Date:  2016-09-23

5.  Health and quality of life outcomes.

Authors:  Meenakshi Jolly; Winston Sequeira; Joel A Block
Journal:  Health Qual Life Outcomes       Date:  2014-12-12       Impact factor: 3.186

6.  Patient-reported outcome measures for use in clinical trials of SLE: a review.

Authors:  Zara Izadi; Julie Gandrup; Patricia P Katz; Jinoos Yazdany
Journal:  Lupus Sci Med       Date:  2018-08-21
  6 in total

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