Costs of illness in amyotrophic lateral sclerosis (ALS): a cross-sectional survey in Germany
Background Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disorder. Consequently, patients undergo a multidisciplinary treatment that often requires intensive use of medical resources. This study provides an estimate on the cost of illness depending on the clinical severity while also analysing the patients’ health-related quality of life.
Methods Primary data from patients and caregivers was collected through a standardized questionnaire. Direct medical, direct non-medical and indirect costs were calculated using the latest German health economic guidelines. Patients were divided into five groups according to the King’s staging system. Health-related quality of life was assessed using EuroQoL Group EQ-5D-5LTM questionnaire. Influencing factors on both total cost and quality of life were examined.
Results The mean annual total cost of illness was 78,256€ per patient while the lifetime cost per patient was estimated at 246,184€. The prevalence based total burden yearly therefore was 519,776,352€ in Germany. Nearly half of the costs were attributable to informal care. With increase of the clinical severity stage, costs rose and quality of life decreased. The score of the revised Amyotrophic Laterals Sclerosis Functional Rating Scale was identified as one major influencing factor on total costs, while subjective impairment in daily activities and classification into a care level as opposed to having no care level influenced patients’ quality of life.
Conclusion It is essential to understand the socioeconomic burden of a disease. These data can be used to improve patient care standards and quality of life while also serving as a basis for cost-benefit analyses during the approval process of new treatments.
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Posted 12 May, 2020
Received 02 May, 2020
Received 02 May, 2020
On 28 Apr, 2020
Invitations sent on 28 Apr, 2020
On 28 Apr, 2020
On 28 Apr, 2020
On 27 Apr, 2020
On 27 Apr, 2020
On 20 Apr, 2020
Received 19 Apr, 2020
Received 05 Apr, 2020
Invitations sent on 24 Mar, 2020
On 24 Mar, 2020
On 24 Mar, 2020
On 28 Feb, 2020
On 27 Feb, 2020
On 27 Feb, 2020
On 27 Feb, 2020
Costs of illness in amyotrophic lateral sclerosis (ALS): a cross-sectional survey in Germany
Posted 12 May, 2020
Received 02 May, 2020
Received 02 May, 2020
On 28 Apr, 2020
Invitations sent on 28 Apr, 2020
On 28 Apr, 2020
On 28 Apr, 2020
On 27 Apr, 2020
On 27 Apr, 2020
On 20 Apr, 2020
Received 19 Apr, 2020
Received 05 Apr, 2020
Invitations sent on 24 Mar, 2020
On 24 Mar, 2020
On 24 Mar, 2020
On 28 Feb, 2020
On 27 Feb, 2020
On 27 Feb, 2020
On 27 Feb, 2020
Background Amyotrophic lateral sclerosis (ALS) is a fatal neurodegenerative disorder. Consequently, patients undergo a multidisciplinary treatment that often requires intensive use of medical resources. This study provides an estimate on the cost of illness depending on the clinical severity while also analysing the patients’ health-related quality of life.
Methods Primary data from patients and caregivers was collected through a standardized questionnaire. Direct medical, direct non-medical and indirect costs were calculated using the latest German health economic guidelines. Patients were divided into five groups according to the King’s staging system. Health-related quality of life was assessed using EuroQoL Group EQ-5D-5LTM questionnaire. Influencing factors on both total cost and quality of life were examined.
Results The mean annual total cost of illness was 78,256€ per patient while the lifetime cost per patient was estimated at 246,184€. The prevalence based total burden yearly therefore was 519,776,352€ in Germany. Nearly half of the costs were attributable to informal care. With increase of the clinical severity stage, costs rose and quality of life decreased. The score of the revised Amyotrophic Laterals Sclerosis Functional Rating Scale was identified as one major influencing factor on total costs, while subjective impairment in daily activities and classification into a care level as opposed to having no care level influenced patients’ quality of life.
Conclusion It is essential to understand the socioeconomic burden of a disease. These data can be used to improve patient care standards and quality of life while also serving as a basis for cost-benefit analyses during the approval process of new treatments.
Figure 1
Figure 2
Figure 3
Figure 4