Malin Regardt1, Pari Basharat2, Lisa Christopher-Stine2, Catherine Sarver2, Anita Björn2, Ingrid E Lundberg2, Yeong Wook Song2, Clifton O Bingham2, Helene Alexanderson2. 1. From the Department of Occupational Therapy, Karolinska University Hospital; Department of Learning, Informatics and Medical Education, Karolinska Institutet, Stockholm, Sweden; Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University Hospital in Solna, Stockholm, Sweden; Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, Korea; Department of Care Science and Society, Division of Physiotherapy, Karolinska Institutet; and Department of Physical Therapy, Karolinska University Hospital, Stockholm, Sweden.M. Regardt, PhD, Occupational Therapist, Department of Occupational Therapy, Karolinska University Hospital, and Department of Learning, Informatics and Medical Education, Karolinska Institutet; P. Basharat, MD; L. Christopher-Stine, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University; C. Sarver, Patient Research Partner, Baltimore, Maryland, USA; A. Björn, Patient Research Partner, Stockholm, Sweden; I.E. Lundberg, MD, Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University Hospital in Solna, Karolinska Institutet; Y. Wook Song, MD, Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University; C.O. Bingham 3rd, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University; H. Alexanderson, Associate Professor, Physiotherapist, Department of Care Science and Society, Division of Physiotherapy, Karolinska Institutet, and Department of Physical Therapy, Karolinska University Hospital. malin.regardt@karolinska.se. 2. From the Department of Occupational Therapy, Karolinska University Hospital; Department of Learning, Informatics and Medical Education, Karolinska Institutet, Stockholm, Sweden; Division of Rheumatology, Department of Medicine, Johns Hopkins University, Baltimore, Maryland, USA; Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University Hospital in Solna, Stockholm, Sweden; Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University, Seoul, Korea; Department of Care Science and Society, Division of Physiotherapy, Karolinska Institutet; and Department of Physical Therapy, Karolinska University Hospital, Stockholm, Sweden.M. Regardt, PhD, Occupational Therapist, Department of Occupational Therapy, Karolinska University Hospital, and Department of Learning, Informatics and Medical Education, Karolinska Institutet; P. Basharat, MD; L. Christopher-Stine, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University; C. Sarver, Patient Research Partner, Baltimore, Maryland, USA; A. Björn, Patient Research Partner, Stockholm, Sweden; I.E. Lundberg, MD, Division of Rheumatology, Rheumatology Unit, Department of Medicine, Karolinska University Hospital in Solna, Karolinska Institutet; Y. Wook Song, MD, Division of Rheumatology, Department of Internal Medicine, Medical Research Center, College of Medicine, Department of Molecular Medicine and Biopharmaceutical Sciences, Seoul National University; C.O. Bingham 3rd, MD, Division of Rheumatology, Department of Medicine, Johns Hopkins University; H. Alexanderson, Associate Professor, Physiotherapist, Department of Care Science and Society, Division of Physiotherapy, Karolinska Institutet, and Department of Physical Therapy, Karolinska University Hospital.
Abstract
OBJECTIVE: The Outcome Measures in Rheumatology (OMERACT) myositis working group was established to examine patient-reported outcomes (PRO) as well as to validate patient-reported outcome measures (PROM) in myositis. METHODS: Qualitative studies using focus group interviews and cognitive debriefing of the myositis-specific Myositis Activities Profile (MAP) were used to explore the experience of adults living with polymyositis (PM) and dermatomyositis (DM). RESULTS: Preliminary results underscore the importance of patient input in the development of PROM to ensure content validity. Results from multicenter focus groups indicate the range of symptoms experienced including pain, fatigue, and impaired cognitive function, which are not currently assessed in myositis. Preliminary cognitive debriefing of the MAP indicated that while content was deemed relevant and important, several activities were not included; and that questionnaire construction and wording may benefit from revision. A research agenda was developed to continue work toward optimizing PRO assessment in myositis with 2 work streams. The first would continue to conduct and analyze focus groups until saturation in the thematic analysis was achieved to develop a framework that encompassed the patient-relevant aspects of myositis. The second would continue cognitive debriefing of the MAP to identify potential areas for revision. There was agreement that further work would be needed for inclusion body myositis and juvenile dermatomyositis, and that the inclusion of additional contributors such as caregivers and individuals from the pharmaceutical/regulatory spheres would be desirable. CONCLUSIONS: The currently used PROM do not assess symptoms or the effects of disease that are most important to patients; this emphasizes the necessity of patient involvement. Our work provides concrete examples for PRO identification.
OBJECTIVE: The Outcome Measures in Rheumatology (OMERACT) myositis working group was established to examine patient-reported outcomes (PRO) as well as to validate patient-reported outcome measures (PROM) in myositis. METHODS: Qualitative studies using focus group interviews and cognitive debriefing of the myositis-specific Myositis Activities Profile (MAP) were used to explore the experience of adults living with polymyositis (PM) and dermatomyositis (DM). RESULTS: Preliminary results underscore the importance of patient input in the development of PROM to ensure content validity. Results from multicenter focus groups indicate the range of symptoms experienced including pain, fatigue, and impaired cognitive function, which are not currently assessed in myositis. Preliminary cognitive debriefing of the MAP indicated that while content was deemed relevant and important, several activities were not included; and that questionnaire construction and wording may benefit from revision. A research agenda was developed to continue work toward optimizing PRO assessment in myositis with 2 work streams. The first would continue to conduct and analyze focus groups until saturation in the thematic analysis was achieved to develop a framework that encompassed the patient-relevant aspects of myositis. The second would continue cognitive debriefing of the MAP to identify potential areas for revision. There was agreement that further work would be needed for inclusion body myositis and juvenile dermatomyositis, and that the inclusion of additional contributors such as caregivers and individuals from the pharmaceutical/regulatory spheres would be desirable. CONCLUSIONS: The currently used PROM do not assess symptoms or the effects of disease that are most important to patients; this emphasizes the necessity of patient involvement. Our work provides concrete examples for PRO identification.
Entities:
Keywords:
MYOSITIS; OMERACT; OUTCOME AND PROCESS ASSESSMENT; PATIENT-REPORTED OUTCOMES
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