Tina Esfandiary1, Jin Kyun Park2, Helene Alexanderson3, Malin Regardt4, Merrilee Needham5, Ingrid de Groot6, Catherine Sarver7, Ingrid E Lundberg8, Marianne de Visser9, Yeong Wook Song10, Dana DiRenzo11, Clifton O Bingham11, Lisa Christopher-Stine11, Christopher A Mecoli12. 1. Department of Medicine, Johns Hopkins University, Baltimore, MD, USA. 2. Division of Rheumatology, Department of Internal Medicine, Seoul National University Hospital, Seoul, South Korea. 3. Physiotherapist, Department of Neurology, Care Science and Society, Division of Physiotherapy, and Department of Medicine Solna, Rheumatology Unit, Karolinska Institutet, and Medical Unit Occupational Therapy and Physical therapy, Karolinska University Hospital, Solna, Stockholm, Sweden. 4. Occupational Therapist, Department of Neurobiology, Care Sciences and Society Division of Occupational Therapy, Karolinska Institutet and Medical Unit Occupational Therapy and Physical therapy, Karolinska University Hospital, Solna, Stockholm, Sweden. 5. Dept Neurology, Fiona Stanley Hospital, IIID Murdoch University and Notre Dame University, Australia. 6. Patient Research Partner, the Netherlands. 7. Patient Research Partner, USA. 8. Division of Rheumatology, Department of Medicine, Karolinska University, Hospital, Karolinska Institutet, Solna, Stockholm, Sweden; Center for Global health, University of Ottawa, Ottawa, ON, Canada. 9. Department of Neurology, Amsterdam University Medical Centers, Academic Medical Center, University of Amsterdam, Amsterdam, the Netherlands. 10. Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, South Korea. 11. Division of Rheumatology, Department of Medicine, Johns Hopkins University, 5200 Eastern Ave, MFL Bldg, Center Tower, Suite 4100, Baltimore 21224, MD, USA. 12. Division of Rheumatology, Department of Medicine, Johns Hopkins University, 5200 Eastern Ave, MFL Bldg, Center Tower, Suite 4100, Baltimore 21224, MD, USA. Electronic address: cmecoli1@jhmi.edu.
Abstract
OBJECTIVE: To investigate the content validity of several patient-reported outcome measures (PROMs) in patients with idiopathic inflammatory myopathies (IIM). METHODS: Seven individual PROM instruments were selected by the Outcome Measures in Rheumatology (OMERACT) Myositis Working Group relating to the following domains: pain, fatigue, physical function and physical activity. Twenty patients from the Johns Hopkins Myositis Center were selected for one-on-one face-to-face or phone interviews for cognitive interviewing of individual PROMs to assess comprehension and content validity. Additionally, patients were asked if they thought muscle symptoms, an area originally identified in qualitative studies, were encapsulated by the other four domains. RESULTS: The majority of patients (>70%) felt that each of the instruments was clear, easy to read and understand, and could be used for assessment of its domain. Two-thirds (66%) of patients felt that 'muscle symptoms' were captured by the other domains. CONCLUSIONS: We provided evidence to support adequate content validity for several PROMs. Further research is needed to determine whether 'muscle symptoms' warrant a separate domain.
OBJECTIVE: To investigate the content validity of several patient-reported outcome measures (PROMs) in patients with idiopathic inflammatory myopathies (IIM). METHODS: Seven individual PROM instruments were selected by the Outcome Measures in Rheumatology (OMERACT) Myositis Working Group relating to the following domains: pain, fatigue, physical function and physical activity. Twenty patients from the Johns Hopkins Myositis Center were selected for one-on-one face-to-face or phone interviews for cognitive interviewing of individual PROMs to assess comprehension and content validity. Additionally, patients were asked if they thought muscle symptoms, an area originally identified in qualitative studies, were encapsulated by the other four domains. RESULTS: The majority of patients (>70%) felt that each of the instruments was clear, easy to read and understand, and could be used for assessment of its domain. Two-thirds (66%) of patients felt that 'muscle symptoms' were captured by the other domains. CONCLUSIONS: We provided evidence to support adequate content validity for several PROMs. Further research is needed to determine whether 'muscle symptoms' warrant a separate domain.
Authors: Christopher A Mecoli; Jin Kyun Park; Helene Alexanderson; Malin Regardt; Merrilee Needham; Ingrid de Groot; Catherine Sarver; Ingrid E Lundberg; Beverley Shea; Marianne de Visser; Yeong Wook Song; Clifton O Bingham; Lisa Christopher-Stine Journal: J Rheumatol Date: 2018-09-15 Impact factor: 4.666
Authors: Lisa G Rider; Rohit Aggarwal; Pedro M Machado; Jean-Yves Hogrel; Ann M Reed; Lisa Christopher-Stine; Nicolino Ruperto Journal: Nat Rev Rheumatol Date: 2018-04-12 Impact factor: 20.543
Authors: S J Bartlett; A K Gutierrez; A Butanis; V P Bykerk; J R Curtis; S Ginsberg; A L Leong; A Lyddiatt; W B Nowell; A M Orbai; K C Smith; C O Bingham Journal: Qual Life Res Date: 2018-05-24 Impact factor: 4.147
Authors: Dorcas E Beaton; Lara J Maxwell; Beverley J Shea; George A Wells; Maarten Boers; Shawna Grosskleg; Clifton O Bingham; Philip G Conaghan; Maria Antonietta D'Agostino; Maarten P de Wit; Laure Gossec; Lyn M March; Lee S Simon; Jasvinder A Singh; Vibeke Strand; Peter Tugwell Journal: J Rheumatol Date: 2019-02-01 Impact factor: 4.666
Authors: Malin Regardt; Christopher A Mecoli; Jin Kyun Park; Ingrid de Groot; Catherine Sarver; Merrilee Needham; Marianne de Visser; Beverly Shea; Clifton O Bingham; Ingrid E Lundberg; Yeong W Song; Lisa Christopher-Stine; Helene Alexanderson Journal: J Rheumatol Date: 2019-02-15 Impact factor: 4.666
Authors: F W Miller; L G Rider; Y L Chung; R Cooper; K Danko; V Farewell; I Lundberg; C Morrison; L Oakley; I Oakley; C Pilkington; J Vencovsky; K Vincent; D L Scott; D A Isenberg Journal: Rheumatology (Oxford) Date: 2001-11 Impact factor: 7.580
Authors: Clifton O Bingham Iii; Anna Kristina Gutierrez; Alessandra Butanis; Vivian P Bykerk; Jeffrey R Curtis; Amye Leong; Anne Lyddiatt; W Benjamin Nowell; Ana Maria Orbai; Susan J Bartlett Journal: J Patient Rep Outcomes Date: 2019-02-21