Construct validity of Patient-Reported Outcomes Measurement Information System Paediatric measures in juvenile idiopathic arthritis and systemic lupus erythematosus: cross-sectional evaluation
Objectives Evaluate construct validity of Patient-Reported Outcomes Measurement Information System (PROMIS) Paediatric measures of symptoms and functioning against measures of disease activity among youth with juvenile idiopathic arthritis (JIA) or systemic lupus erythematosus (SLE).Design Cross-sec...
| Main Authors: | , , , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMJ Publishing Group
2023-01-01
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| Series: | BMJ Open |
| Online Access: | https://bmjopen.bmj.com/content/13/1/e063675.full |
| _version_ | 1827890862201241600 |
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| author | Laura E Schanberg Fatma Dedeoglu Li Lin Rachele Cox Sarah Ringold Emily von Scheven Elissa R Weitzman Bryce B Reeve Amy Gaultney Courtney M Mann Kara M Magane Renee Leverty Anne Dennos Alexy Hernandez Steven J Lippmann Alexandra C Marin |
| author_facet | Laura E Schanberg Fatma Dedeoglu Li Lin Rachele Cox Sarah Ringold Emily von Scheven Elissa R Weitzman Bryce B Reeve Amy Gaultney Courtney M Mann Kara M Magane Renee Leverty Anne Dennos Alexy Hernandez Steven J Lippmann Alexandra C Marin |
| author_sort | Laura E Schanberg |
| collection | DOAJ |
| description | Objectives Evaluate construct validity of Patient-Reported Outcomes Measurement Information System (PROMIS) Paediatric measures of symptoms and functioning against measures of disease activity among youth with juvenile idiopathic arthritis (JIA) or systemic lupus erythematosus (SLE).Design Cross-sectional associations among PROMIS measures and clinical metrics of disease activity were estimated.Setting Seven clinical sites of the Childhood Arthritis and Rheumatology Alliance (CARRA) in the USA.Participants Youth aged 8–17 years enrolled in the CARRA Registry.Intervention PROMIS measures were collected and associations with clinical measures of disease activity estimated, by condition, in bivariate and multivariable analyses with adjustment for sociodemographics, insurance status, medications and disease duration.Main outcome measures PROMIS Paediatric measures of mobility, physical activity, fatigue, pain interference, family relationships, peer relationships, depressive symptoms, psychological stress, anxiety, and meaning and purpose, and clinical metrics of disease.Results Among 451 youth (average age 13.8 years, 71% female), most (n=393, 87%) had a JIA diagnosis and the remainder (n=58, 13%) had SLE. Among participants with JIA, those with moderate/high compared with low/inactive disease had, on average, worse mobility (multivariable regression coefficient and 95% CIs) (−7.40; −9.30 to –5.50), fatigue (3.22; 1.02 to 5.42), pain interference (4.76; 3.04 to 6.48), peer relationships (−2.58; −4.52 to –1.64), depressive symptoms (3.00; 0.96 to 5.04), anxiety (2.48; 0.40 to 4.56) and psychological stress (2.52; 0.68 to 4.36). For SLE, youth with active versus inactive disease had on average worse mobility (−5.07; −10.15 to 0.01) but PROMIS Paediatric measures did not discriminate participants with active and inactive disease in adjusted analyses.Conclusions Seven PROMIS Paediatric measures discriminated between active and inactive disease in youth with JIA. Results advance the usefulness of PROMIS for understanding well-being and improving interventions for youth with JIA, but larger studies are needed to determine utility in SLE cohorts.Trial registration number National Institute of Arthritis and Musculoskeletal and Skin Diseases (U19AR069522). |
| first_indexed | 2024-03-12T21:15:14Z |
| format | Article |
| id | doaj.art-bac78edbf360417ea8aaefdadef78f4f |
| institution | Directory Open Access Journal |
| issn | 2044-6055 |
| language | English |
| last_indexed | 2024-03-12T21:15:14Z |
| publishDate | 2023-01-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open |
| spelling | doaj.art-bac78edbf360417ea8aaefdadef78f4f2023-07-29T18:20:07ZengBMJ Publishing GroupBMJ Open2044-60552023-01-0113110.1136/bmjopen-2022-063675Construct validity of Patient-Reported Outcomes Measurement Information System Paediatric measures in juvenile idiopathic arthritis and systemic lupus erythematosus: cross-sectional evaluationLaura E Schanberg0Fatma Dedeoglu1Li Lin2Rachele Cox3Sarah Ringold4Emily von Scheven5Elissa R Weitzman6Bryce B Reeve7Amy Gaultney8Courtney M Mann9Kara M Magane10Renee Leverty11Anne Dennos12Alexy Hernandez13Steven J Lippmann14Alexandra C Marin15Department of Pediatrics, Duke University School of Medicine, Durham, North Carolina, USADivision of Immunology, Boston Children`s Hospital, Boston, Massachusetts, USAassociate professorDivision of Adolescent/Young Adult Medicine, Boston Children`s Hospital, Boston, Massachusetts, USAPediatrics, Seattle Children`s Hospital, Seattle, Washington, USAPediatric Rheumatology, University of California San Francisco, San Francisco, California, USAComputational Health Informatics Program, Boston Children`s Hospital, Boston, Massachusetts, USAPopulation Health Sciences, Duke University School of Medicine, Durham, North Carolina, USAPediatric Rheumatology, Children`s Hospital of Orange County, Orange, California, USAPopulation Health Sciences, Duke University School of Medicine, Durham, North Carolina, USADivision of Adolescent/Young Adult Medicine, Boston Children`s Hospital, Boston, Massachusetts, USADuke Clinical Research Institute, Duke University School of Medicine, Durham, North Carolina, USADuke Clinical Research Institute, Duke University School of Medicine, Durham, North Carolina, USAPopulation Health Sciences, Duke University School of Medicine, Durham, North Carolina, USAPopulation Health Sciences, Duke University School of Medicine, Durham, North Carolina, USADivision of Adolescent/Young Adult Medicine, Boston Children`s Hospital, Boston, Massachusetts, USAObjectives Evaluate construct validity of Patient-Reported Outcomes Measurement Information System (PROMIS) Paediatric measures of symptoms and functioning against measures of disease activity among youth with juvenile idiopathic arthritis (JIA) or systemic lupus erythematosus (SLE).Design Cross-sectional associations among PROMIS measures and clinical metrics of disease activity were estimated.Setting Seven clinical sites of the Childhood Arthritis and Rheumatology Alliance (CARRA) in the USA.Participants Youth aged 8–17 years enrolled in the CARRA Registry.Intervention PROMIS measures were collected and associations with clinical measures of disease activity estimated, by condition, in bivariate and multivariable analyses with adjustment for sociodemographics, insurance status, medications and disease duration.Main outcome measures PROMIS Paediatric measures of mobility, physical activity, fatigue, pain interference, family relationships, peer relationships, depressive symptoms, psychological stress, anxiety, and meaning and purpose, and clinical metrics of disease.Results Among 451 youth (average age 13.8 years, 71% female), most (n=393, 87%) had a JIA diagnosis and the remainder (n=58, 13%) had SLE. Among participants with JIA, those with moderate/high compared with low/inactive disease had, on average, worse mobility (multivariable regression coefficient and 95% CIs) (−7.40; −9.30 to –5.50), fatigue (3.22; 1.02 to 5.42), pain interference (4.76; 3.04 to 6.48), peer relationships (−2.58; −4.52 to –1.64), depressive symptoms (3.00; 0.96 to 5.04), anxiety (2.48; 0.40 to 4.56) and psychological stress (2.52; 0.68 to 4.36). For SLE, youth with active versus inactive disease had on average worse mobility (−5.07; −10.15 to 0.01) but PROMIS Paediatric measures did not discriminate participants with active and inactive disease in adjusted analyses.Conclusions Seven PROMIS Paediatric measures discriminated between active and inactive disease in youth with JIA. Results advance the usefulness of PROMIS for understanding well-being and improving interventions for youth with JIA, but larger studies are needed to determine utility in SLE cohorts.Trial registration number National Institute of Arthritis and Musculoskeletal and Skin Diseases (U19AR069522).https://bmjopen.bmj.com/content/13/1/e063675.full |
| spellingShingle | Laura E Schanberg Fatma Dedeoglu Li Lin Rachele Cox Sarah Ringold Emily von Scheven Elissa R Weitzman Bryce B Reeve Amy Gaultney Courtney M Mann Kara M Magane Renee Leverty Anne Dennos Alexy Hernandez Steven J Lippmann Alexandra C Marin Construct validity of Patient-Reported Outcomes Measurement Information System Paediatric measures in juvenile idiopathic arthritis and systemic lupus erythematosus: cross-sectional evaluation BMJ Open |
| title | Construct validity of Patient-Reported Outcomes Measurement Information System Paediatric measures in juvenile idiopathic arthritis and systemic lupus erythematosus: cross-sectional evaluation |
| title_full | Construct validity of Patient-Reported Outcomes Measurement Information System Paediatric measures in juvenile idiopathic arthritis and systemic lupus erythematosus: cross-sectional evaluation |
| title_fullStr | Construct validity of Patient-Reported Outcomes Measurement Information System Paediatric measures in juvenile idiopathic arthritis and systemic lupus erythematosus: cross-sectional evaluation |
| title_full_unstemmed | Construct validity of Patient-Reported Outcomes Measurement Information System Paediatric measures in juvenile idiopathic arthritis and systemic lupus erythematosus: cross-sectional evaluation |
| title_short | Construct validity of Patient-Reported Outcomes Measurement Information System Paediatric measures in juvenile idiopathic arthritis and systemic lupus erythematosus: cross-sectional evaluation |
| title_sort | construct validity of patient reported outcomes measurement information system paediatric measures in juvenile idiopathic arthritis and systemic lupus erythematosus cross sectional evaluation |
| url | https://bmjopen.bmj.com/content/13/1/e063675.full |
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