Treatment-Related and Non-Treatment-Related Out-of-Pocket Costs by Amyotrophic Lateral Sclerosis Disease Stage: A Cross-Sectional Patient Survey and Retrospective Chart Review
Author(s)
Ploug U1, Savic N2, Mellor J3, Wright J3, Bonar K4
1UCB Pharma, Copenhagen, Denmark, 2UCB Pharma, Bulle, Switzerland, 3Adelphi Real World, Bollington, CHE, UK, 4UCB Pharma, Slough, UK
Presentation Documents
OBJECTIVES:
To assess treatment-related and non-treatment-related out-of-pocket costs in people with amyotrophic lateral sclerosis (ALS) by disease stage.METHODS:
Data were collected via the Adelphi ALS Disease Specific Programme™ (DSP) in France, Germany, Italy, Spain, UK, and US between July 2020 and March 2021. Retrospective chart reviews were completed by neurologists about their consulting ALS patients. A subset of these patients provided self-reported data (or their accompanying caregiver if patients were willing but unable to participate). Data derived from the patient-completed survey included treatment-related (e.g., prescriptions) and non-treatment-related (e.g., transport for appointments) out-of-pocket costs. Each patient’s disease was classified by King’s, Milano-Torino (MiToS), and Fine’til 9 (FT9) staging systems, using clinical information from the physician.RESULTS:
172 patients and/or their caregivers completed a survey, with a mean ALS Functional Rating Scale score of 32.7 at time of survey completion. Self-reported mean monthly treatment-related out-of-pocket costs were €48.40 and €586.54 for King’s stages 1 (n=25) and 4b (n=24) patients, €202.90 and €216.67 for MiToS stages 0 (n=98) and 4 (n=3) patients, and €57.71 and €391.52 for FT9 stages 0 (n=24) and 4 (n=21) patients, respectively. Mean monthly non-treatment-related out-of-pocket costs were €57.97 and €2942.77 for King’s stages 1 (n=25) and 4b (n=23) patients, €963.25 and €233.33 for MiToS stages 0 (n=98) and 4 (n=3) patients, and €233.45 and €2514.24 for FT9 stages 0 (n=24) and 4 (n=19) patients, respectively.CONCLUSIONS:
This is one of the first studies to assess out-of-pocket costs by ALS disease stage. Costs were generally higher in later disease stages compared with earlier disease stages, but the staging system used may affect the magnitude of the difference. This pattern is slightly uncertain owing to a small sample but warrants further research using a larger population. UCB Pharma is one of multiple subscribers to the Adelphi ALS DSP.Conference/Value in Health Info
2022-11, ISPOR Europe 2022, Vienna, Austria
Value in Health, Volume 25, Issue 12S (December 2022)
Code
EE514
Topic
Economic Evaluation
Topic Subcategory
Work & Home Productivity - Indirect Costs
Disease
SDC: Rare & Orphan Diseases