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Cost of illness in inclusion body myositis : results from a cross-sectional study in Germany

DOI zum Zitieren der Version auf EPub Bayreuth:
URN to cite this document: urn:nbn:de:bvb:703-epub-7530-1

Title data

Senn, Katja ; Thiele, Simone ; Kummer, Karsten ; Walter, Maggie C. ; Nagels, Klaus:
Cost of illness in inclusion body myositis : results from a cross-sectional study in Germany.
In: Orphanet Journal of Rare Diseases. Vol. 18 (2023) . - 337.
ISSN 1750-1172
DOI der Verlagsversion:

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Project financing: Deutsche Forschungsgemeinschaft
Friedrich-Baur Public Trust, Burgkunstadt within the ‘Oberfranken Förderprogramm’ (Upper Frankonia Program)
Open Access Publishing Fund of the University of Bayreuth


Background Inclusion body myositis (IBM) is the most frequent type of myositis in elder patients with a slow chronic progression and refractory to treatment. Previous cost of illness (COI) studies in IBM used claims data to estimate direct costs in the US. No evidence exists globally on both direct and indirect costs in IBM from a societal perspective. We conducted a survey in patients registered in the German IBM patient registry. Self-developed items were used to assess the utilized healthcare resources and estimate the cost. The German Self-Administered Comorbidity Questionnaire (SCQ-D), the sIBM Physical Functioning Assessment (sIFA) and patient-reported measures for satisfaction and improvements in healthcare were applied for an explorative analysis. Results In total, 82 patients completed the survey. We estimated the mean total annual per capita COI of US$102,682 (95% CI US$82,763–US$123,090) in 2021. 92.7% of the total COI were direct costs. Medical costs were similar to nonmedical costs, with substantial costs for pharmacotherapy and informal care. Depending on the prevalence estimate, the total national COI per year were US$42.7 million–US$213.7 million. Significant differences in total COI were identified for the degree of disability, marital and employment status (p < 0.05). Conclusions We identified remarkable and heterogenous cost in IBM. As informal care costs represented the most relevant cost driver, caregiver burden is a major factor in the patient journey. For the first time, comprehensive economic potentials were identified as a basis to improve the actual care situations and prioritizing future activities for research, pharmaceutical and digital product development as well as health politics.

Further data

Item Type: Article in a journal
Keywords: Inclusion body myositis; Cost of illness; Direct costs; Indirect costs; Informal care costs; Neuromuscular disease; Health services research
DDC Subjects: 600 Technology, medicine, applied sciences > 610 Medicine and health
Institutions of the University: Faculties > Faculty of Law, Business and Economics > Chair Healthcare Management and Research > Chair Healthcare Management and Research - Univ.-Prof. Dr. Klaus Nagels
Faculties > Faculty of Law, Business and Economics
Faculties > Faculty of Law, Business and Economics > Chair Healthcare Management and Research
Language: English
Originates at UBT: Yes
URN: urn:nbn:de:bvb:703-epub-7530-1
Date Deposited: 12 Mar 2024 09:50
Last Modified: 12 Mar 2024 09:51


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