Costs of illness in amyotrophic lateral sclerosis (ALS): a cross-sectional survey in Germany

Abstract

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 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 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.

Shared Genetic Links Between Amyotrophic Lateral Sclerosis and Obesity-Related Traits: A Genome-Wide Association Study

“…Amyotrophic lateral sclerosis (ALS) is a fetal neurodegenerative disorder with an average survival period around 3-5 years since the symptom onset, which brings a substantial impact on the quality of life for patients and their families, and huge socioeconomic burdens [1,2]. With the advent of next-generation sequencing, emerging evidence suggests a substantial genetic component underlying ALS [3,4].…”

Design and synthesis of small organic molecules to stabilize ALS-associated SOD1 mutants

“…Numbers for Germany were collected in a study from 2020, which implies that up to 520.000.000 € need to be expended to fulfill the needs of ALS patients yearly. [37] Since the most important risk factor for ALS is the age of an individual, numbers are expected to rise dramatically within the near future. This means that new medications and better methods for non-drug therapies are necessary.…”

“…The proposed mechanism of this reaction is described in Figure 4.2.1-6. In the first step, ketone (37) and bromoketone (38) were reacted to the desired 1,4diketone structure using a condensation agent consisting of ZnCl2, EtOH and Et3N in toluene at room temperature for several days (Figure 4.2.1-7). Recrystallization of the precipitated solid afforded the general precursor (32) in 70% yield.…”