See the published version of this preprint at Orphanet Journal of Rare Diseases.
This is a preprint, a preliminary version of a manuscript that has not completed peer review at a journal. Research Square does not conduct peer review prior to posting preprints. The posting of a preprint on this server should not be interpreted as an endorsement of its validity or suitability for dissemination as established information or for guiding clinical practice.
Learn more about In Review
Research
Olivia Schreiber-Katz
Hannover Medical School
Corresponding Author
ORCiD: https://orcid.org/0000-0001-5621-4487
License:
This work is licensed under a CC BY 4.0 License. Read Full License
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.
Keywords
Amyotrophic lateral sclerosis (ALS), cost of illness (COI), health care burden, disease cost, King’s staging system, health-related quality of life (HRQoL), socioeconomic burden
Figure 1
Figure 2
Figure 3
Figure 4
This is a list of supplementary files associated with this preprint. Click to download.
Loading...
Badges
Prescreen
This manuscript passed our Prescreen assessment
Complete author information
Appropriate declaration statements
Potential risks to human health
Prescreen
Peer Review Timeline
CURRENT STATUS: Published
View the published article at Orphanet Journal of Rare Diseases.
Version 2
Posted 12 May, 2020
No community comments so far
Editorial decision: Accept
On 17 May, 2020
Review #2 received
Received 02 May, 2020
Review #1 received
Received 02 May, 2020
Editor assigned
On 28 Apr, 2020
Reviewers invited
Invitations sent on 28 Apr, 2020
Reviewer #1 agreed
On 28 Apr, 2020
Reviewer #2 agreed
On 28 Apr, 2020
Submission checks complete
On 27 Apr, 2020
Editor invited
On 27 Apr, 2020
No comments provided
Editorial decision: Minor revision
On 20 Apr, 2020
Review #2 received
Received 19 Apr, 2020
Review #1 received
Received 05 Apr, 2020
Reviewers invited
Invitations sent on 24 Mar, 2020
Reviewer #1 agreed
On 24 Mar, 2020
Reviewer #2 agreed
On 24 Mar, 2020
Editor assigned
On 28 Feb, 2020
First submitted
On 27 Feb, 2020
Submission checks complete
On 27 Feb, 2020
Editor invited
On 27 Feb, 2020
Metrics
Comments: 0
PDF Downloads: ...
HTML Views: ...
Subject Areas
Internal Medicine
Learn more about our company.
See the published version of this preprint at Orphanet Journal of Rare Diseases.
This is a preprint, a preliminary version of a manuscript that has not completed peer review at a journal. Research Square does not conduct peer review prior to posting preprints. The posting of a preprint on this server should not be interpreted as an endorsement of its validity or suitability for dissemination as established information or for guiding clinical practice.
Learn more about In Review
Research
Olivia Schreiber-Katz
Hannover Medical School
Corresponding Author
ORCiD: https://orcid.org/0000-0001-5621-4487
Badges
Prescreen
This manuscript passed our Prescreen assessment
Complete author information
Appropriate declaration statements
Potential risks to human health
Prescreen
Peer Review Timeline
CURRENT STATUS: Published
View the published article at Orphanet Journal of Rare Diseases.
Version 2
Posted 12 May, 2020
No community comments so far
Editorial decision: Accept
On 17 May, 2020
Review #2 received
Received 02 May, 2020
Review #1 received
Received 02 May, 2020
Editor assigned
On 28 Apr, 2020
Reviewers invited
Invitations sent on 28 Apr, 2020
Reviewer #1 agreed
On 28 Apr, 2020
Reviewer #2 agreed
On 28 Apr, 2020
Submission checks complete
On 27 Apr, 2020
Editor invited
On 27 Apr, 2020
No comments provided
Editorial decision: Minor revision
On 20 Apr, 2020
Review #2 received
Received 19 Apr, 2020
Review #1 received
Received 05 Apr, 2020
Reviewers invited
Invitations sent on 24 Mar, 2020
Reviewer #1 agreed
On 24 Mar, 2020
Reviewer #2 agreed
On 24 Mar, 2020
Editor assigned
On 28 Feb, 2020
First submitted
On 27 Feb, 2020
Submission checks complete
On 27 Feb, 2020
Editor invited
On 27 Feb, 2020
Metrics
Comments: 0
PDF Downloads: ...
HTML Views: ...
Subject Areas
Internal Medicine
License:
This work is licensed under a CC BY 4.0 License. Read Full License
View the published article at Orphanet Journal of Rare Diseases.
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
Loading...