Cost of illness in inclusion body myositis: results from a cross-sectional study in Germany
Abstract 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 bot...
| Main Authors: | , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2023-10-01
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| Series: | Orphanet Journal of Rare Diseases |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s13023-023-02902-3 |
| _version_ | 1797556531462406144 |
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| author | Katja C. Senn Simone Thiele Karsten Kummer Maggie C. Walter Klaus H. Nagels |
| author_facet | Katja C. Senn Simone Thiele Karsten Kummer Maggie C. Walter Klaus H. Nagels |
| author_sort | Katja C. Senn |
| collection | DOAJ |
| description | Abstract 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. |
| first_indexed | 2024-03-10T17:03:11Z |
| format | Article |
| id | doaj.art-b8de615f962b45edb14cb72f85d72381 |
| institution | Directory Open Access Journal |
| issn | 1750-1172 |
| language | English |
| last_indexed | 2024-03-10T17:03:11Z |
| publishDate | 2023-10-01 |
| publisher | BMC |
| record_format | Article |
| series | Orphanet Journal of Rare Diseases |
| spelling | doaj.art-b8de615f962b45edb14cb72f85d723812023-11-20T10:53:42ZengBMCOrphanet Journal of Rare Diseases1750-11722023-10-0118111510.1186/s13023-023-02902-3Cost of illness in inclusion body myositis: results from a cross-sectional study in GermanyKatja C. Senn0Simone Thiele1Karsten Kummer2Maggie C. Walter3Klaus H. Nagels4Chair of Healthcare Management and Health Services Research, University of BayreuthDepartment of Neurology, Friedrich Baur Institute, LMU University Hospital, LMU MunichDepartment of Neurology, University Medical Center GoettingenDepartment of Neurology, Friedrich Baur Institute, LMU University Hospital, LMU MunichChair of Healthcare Management and Health Services Research, University of BayreuthAbstract 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.https://doi.org/10.1186/s13023-023-02902-3Inclusion body myositisCost of illnessDirect costsIndirect costsInformal care costsNeuromuscular disease |
| spellingShingle | Katja C. Senn Simone Thiele Karsten Kummer Maggie C. Walter Klaus H. Nagels Cost of illness in inclusion body myositis: results from a cross-sectional study in Germany Orphanet Journal of Rare Diseases Inclusion body myositis Cost of illness Direct costs Indirect costs Informal care costs Neuromuscular disease |
| title | Cost of illness in inclusion body myositis: results from a cross-sectional study in Germany |
| title_full | Cost of illness in inclusion body myositis: results from a cross-sectional study in Germany |
| title_fullStr | Cost of illness in inclusion body myositis: results from a cross-sectional study in Germany |
| title_full_unstemmed | Cost of illness in inclusion body myositis: results from a cross-sectional study in Germany |
| title_short | Cost of illness in inclusion body myositis: results from a cross-sectional study in Germany |
| title_sort | cost of illness in inclusion body myositis results from a cross sectional study in germany |
| topic | Inclusion body myositis Cost of illness Direct costs Indirect costs Informal care costs Neuromuscular disease |
| url | https://doi.org/10.1186/s13023-023-02902-3 |
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