Literature DB >> 33568191

Which patient-reported outcomes do rheumatology patients find important to track digitally? A real-world longitudinal study in ArthritisPower.

W Benjamin Nowell1, Kelly Gavigan2, Carol L Kannowski3, Zhihong Cai4, Theresa Hunter3, Shilpa Venkatachalam2, Julie Birt3, Jennifer Workman3, Jeffrey R Curtis5.   

Abstract

BACKGROUND: Patient-reported outcomes (PROs) are increasingly used to track symptoms and to assess disease activity, quality of life, and treatment effectiveness. It is therefore important to understand which PROs patients with rheumatic and musculoskeletal disease consider most important to track for disease management.
METHODS: Adult US patients within the ArthritisPower registry with ankylosing spondylitis, fibromyalgia syndrome, osteoarthritis, osteoporosis, psoriatic arthritis, rheumatoid arthritis, and systemic lupus erythematosus were invited to select between 3 and 10 PRO symptom measures they felt were important to digitally track for their condition via the ArthritisPower app. Over the next 3 months, participants (pts) were given the option to continue tracking their previously selected measures or to remove/add measures at 3 subsequent monthly time points (month [m] 1, m2, m3). At m3, pts prioritized up to 5 measures. Measures were rank-ordered, summed, and weighted based on pts rating to produce a summary score for each PRO measure.
RESULTS: Among pts who completed initial selection of PRO assessments at baseline (N = 253), 140 pts confirmed or changed PRO selections across m1-3 within the specified monthly time window (28 days ± 7). PROs ranked as most important for tracking were PROMIS Fatigue, Physical Function, Pain Intensity, Pain Interference, Duration of Morning Joint Stiffness, and Sleep Disturbance. Patient's preferences regarding the importance of these PROs were stable over time.
CONCLUSION: The symptoms that rheumatology patients prioritized for longitudinal tracking using a smartphone app were fatigue, physical function, pain, and morning joint stiffness.

Entities:  

Keywords:  Patient-reported outcomes; Real-world evidence; Rheumatoid arthritis

Mesh:

Year:  2021        PMID: 33568191      PMCID: PMC7873115          DOI: 10.1186/s13075-021-02430-0

Source DB:  PubMed          Journal:  Arthritis Res Ther        ISSN: 1478-6354            Impact factor:   5.156


  32 in total

1.  Physical and psychosocial correlates of severe fatigue in rheumatoid arthritis.

Authors:  Dewy van Hoogmoed; Jaap Fransen; Gijs Bleijenberg; Piet van Riel
Journal:  Rheumatology (Oxford)       Date:  2010-03-29       Impact factor: 7.580

2.  Getting the methods right--the foundation of patient-centered outcomes research.

Authors:  Sherine E Gabriel; Sharon-Lise T Normand
Journal:  N Engl J Med       Date:  2012-07-25       Impact factor: 91.245

Review 3.  Patient-reported outcomes in rheumatoid arthritis.

Authors:  Minyoung Her; Arthur Kavanaugh
Journal:  Curr Opin Rheumatol       Date:  2012-05       Impact factor: 5.006

Review 4.  Digital Interventions to Build a Patient Registry for Rheumatology Research.

Authors:  William Benjamin Nowell; David Curtis; Michelle Thai; Carole Wiedmeyer; Kelly Gavigan; Shilpa Venkatachalam; Seth Ginsberg; Jeffrey R Curtis
Journal:  Rheum Dis Clin North Am       Date:  2019-05       Impact factor: 2.670

Review 5.  Establishing a core domain set to measure rheumatoid arthritis flares: report of the OMERACT 11 RA flare Workshop.

Authors:  Vivian P Bykerk; Elisabeth Lie; Susan J Bartlett; Rieke Alten; Annelies Boonen; Robin Christensen; Daniel E Furst; Sarah Hewlett; Amye L Leong; Anne Lyddiatt; Lyn March; James E May; Pam Montie; Ana-Maria Orbai; Christoph Pohl; Marieke Scholte Voshaar; Thasia Woodworth; Clifton O Bingham; Ernest H Choy
Journal:  J Rheumatol       Date:  2014-03-01       Impact factor: 4.666

6.  Responsiveness of patient reported outcomes including fatigue, sleep quality, activity limitation, and quality of life following treatment with abatacept for rheumatoid arthritis.

Authors:  G Wells; T Li; L Maxwell; R Maclean; P Tugwell
Journal:  Ann Rheum Dis       Date:  2007-09-10       Impact factor: 19.103

7.  Identifying core domains to assess flare in rheumatoid arthritis: an OMERACT international patient and provider combined Delphi consensus.

Authors:  Susan J Bartlett; Sarah Hewlett; Clifton O Bingham; Thasia G Woodworth; Rieke Alten; Christoph Pohl; Ernest H Choy; Tessa Sanderson; Annelies Boonen; Vivian Bykerk; Amye L Leong; Vibeke Strand; Daniel E Furst; Robin Christensen
Journal:  Ann Rheum Dis       Date:  2012-07-06       Impact factor: 19.103

Review 8.  Using technology to support clinical care and research in rheumatoid arthritis.

Authors:  William G Dixon; Kaleb Michaud
Journal:  Curr Opin Rheumatol       Date:  2018-05       Impact factor: 5.006

9.  Baricitinib in patients with inadequate response or intolerance to conventional synthetic DMARDs: results from the RA-BUILD study.

Authors:  Maxime Dougados; Désirée van der Heijde; Ying-Chou Chen; Maria Greenwald; Edit Drescher; Jiajun Liu; Scott Beattie; Sarah Witt; Inmaculada de la Torre; Carol Gaich; Terence Rooney; Douglas Schlichting; Stephanie de Bono; Paul Emery
Journal:  Ann Rheum Dis       Date:  2016-09-29       Impact factor: 19.103

10.  Patient Governance in a Patient-Powered Research Network for Adult Rheumatologic Conditions.

Authors:  W Benjamin Nowell; Jeffrey R Curtis; Rachelle Crow-Hercher
Journal:  Med Care       Date:  2018-10       Impact factor: 2.983

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  9 in total

1.  Meaningful Improvement in General Health Outcomes with Guselkumab Treatment for Psoriatic Arthritis: Patient-Reported Outcomes Measurement Information System-29 Results from a Phase 3 Study.

Authors:  Ana-Maria Orbai; Laura C Coates; Atul Deodhar; Philip S Helliwell; Christopher T Ritchlin; Evan Leibowitz; Alexa P Kollmeier; Elizabeth C Hsia; Xie L Xu; Shihong Sheng; Yusang Jiang; Yan Liu; Chenglong Han
Journal:  Patient       Date:  2022-06-30       Impact factor: 3.481

Review 2.  Patient registries in orthopedics and orthobiologic procedures: a narrative review.

Authors:  Cedric Lester Magaway; Gerard Malanga
Journal:  BMC Musculoskelet Disord       Date:  2022-06-06       Impact factor: 2.562

Review 3.  Cannabis for Rheumatic Disease Pain: a Review of Current Literature.

Authors:  William Benjamin Nowell; Kelly Gavigan; Stuart L Silverman
Journal:  Curr Rheumatol Rep       Date:  2022-04-29       Impact factor: 4.686

Review 4.  Smartphones for musculoskeletal research - hype or hope? Lessons from a decennium of mHealth studies.

Authors:  Anna L Beukenhorst; Katie L Druce; Diederik De Cock
Journal:  BMC Musculoskelet Disord       Date:  2022-05-23       Impact factor: 2.562

5.  Patient-Powered Research Networks of the Autoimmune Research Collaborative: Rationale, Capacity, and Future Directions.

Authors:  W Benjamin Nowell; Peter A Merkel; Robert N McBurney; Kalen Young; Shilpa Venkatachalam; Dianne G Shaw; Angela Dobes; Emily Cerciello; Laura Kolaczkowski; Jeffrey R Curtis; Michael D Kappelman
Journal:  Patient       Date:  2021-04-27       Impact factor: 3.883

6.  The impact of tofacitinib on fatigue, sleep, and health-related quality of life in patients with rheumatoid arthritis: a post hoc analysis of data from Phase 3 trials.

Authors:  Susan J Bartlett; Clifton O Bingham; Ronald van Vollenhoven; Christopher Murray; David Gruben; David A Gold; David Cella
Journal:  Arthritis Res Ther       Date:  2022-04-05       Impact factor: 5.156

Review 7.  A Systematic Review of the Development and Psychometric Properties of Constipation-Related Patient-Reported Outcome Measures: Opportunities for Digital Health.

Authors:  V Vien Lee; Ni Yin Lau; David J Y Xi; Anh T L Truong; Agata Blasiak; Kewin T H Siah; Dean Ho
Journal:  J Neurogastroenterol Motil       Date:  2022-06-20       Impact factor: 4.725

8.  Causal Relationships Between Total Physical Activity and Ankylosing Spondylitis: A Mendelian Randomization Study.

Authors:  Shaojun Hu; Hongyuan Xing; Xingchen Wang; Ning Zhang; Qiang Xu
Journal:  Front Immunol       Date:  2022-07-05       Impact factor: 8.786

Review 9.  State of the art and future directions in assessing the quality of life in rare and complex connective tissue and musculoskeletal diseases.

Authors:  Leopoldo Trieste; Sara Cannizzo; Ilaria Palla; Isotta Triulzi; Giuseppe Turchetti
Journal:  Front Med (Lausanne)       Date:  2022-09-23
  9 in total

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