I Armadans-Tremolosa1, G Guilera2,3, M Las Heras1, A Castrechini1, A Selva-O'Callaghan4. 1. Department of Social Psychology and Quantitative Psychology, PsicoSAO-Research Group in Social, Environmental, and Organizational Psychology, Universitat de Barcelona, Barcelona, Spain. 2. Department of Social Psychology and Quantitative Psychology, Universitat de Barcelona, Barcelona, Spain. 3. Institute of Neurosciences, Universitat de Barcelona, Barcelona, Spain. 4. Systemic Autoimmune Diseases Unit, Department of Medicine, Vall d'Hebron General Hospital, Universitat Autonoma de Barcelona, Barcelona, Spain.
Abstract
OBJECTIVE: Health-related quality of life is impaired in idiopathic inflammatory myopathies. This study aimed to identify the main areas of the health-related quality of life environment domain that are affected in patients with myositis. METHODS: A qualitative study was performed using focus groups and applying the International Classification of Functioning, Disability, and Health. Participants were recruited from a cohort of 323 adult inflammatory myopathy patients consulting at a reference center for idiopathic inflammatory myopathy in Spain, selected by the maximum variation strategy, and placed in focus groups with 5 to 7 patients per group. The number of focus groups required was determined by data saturation. RESULTS: Twenty-five patients distributed in 4 focus groups were interviewed. The verbatim provided 54 categories directly related with environmental factors. Those associated with products or substances for personal consumption (e110), health professionals (e355), health services, systems and policies (e580), products and technology for personal use in daily living (e115), and immediate family (e310) were the ones most frequently reported. CONCLUSION: The results of this study led to identification of several environmental factors that affect the health-related quality of life of patients with myositis. Remedial interventions should be designed to address some of these factors.
OBJECTIVE: Health-related quality of life is impaired in idiopathic inflammatory myopathies. This study aimed to identify the main areas of the health-related quality of life environment domain that are affected in patients with myositis. METHODS: A qualitative study was performed using focus groups and applying the International Classification of Functioning, Disability, and Health. Participants were recruited from a cohort of 323 adult inflammatory myopathypatients consulting at a reference center for idiopathic inflammatory myopathy in Spain, selected by the maximum variation strategy, and placed in focus groups with 5 to 7 patients per group. The number of focus groups required was determined by data saturation. RESULTS: Twenty-five patients distributed in 4 focus groups were interviewed. The verbatim provided 54 categories directly related with environmental factors. Those associated with products or substances for personal consumption (e110), health professionals (e355), health services, systems and policies (e580), products and technology for personal use in daily living (e115), and immediate family (e310) were the ones most frequently reported. CONCLUSION: The results of this study led to identification of several environmental factors that affect the health-related quality of life of patients with myositis. Remedial interventions should be designed to address some of these factors.
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Authors: Ingrid E Lundberg; Anna Tjärnlund; Matteo Bottai; Victoria P Werth; Clarissa Pilkington; Marianne de Visser; Lars Alfredsson; Anthony A Amato; Richard J Barohn; Matthew H Liang; Jasvinder A Singh; Rohit Aggarwal; Snjolaug Arnardottir; Hector Chinoy; Robert G Cooper; Katalin Dankó; Mazen M Dimachkie; Brian M Feldman; Ignacio Garcia-De La Torre; Patrick Gordon; Taichi Hayashi; James D Katz; Hitoshi Kohsaka; Peter A Lachenbruch; Bianca A Lang; Yuhui Li; Chester V Oddis; Marzena Olesinska; Ann M Reed; Lidia Rutkowska-Sak; Helga Sanner; Albert Selva-O'Callaghan; Yeong-Wook Song; Jiri Vencovsky; Steven R Ytterberg; Frederick W Miller; Lisa G Rider Journal: Ann Rheum Dis Date: 2017-10-27 Impact factor: 19.103