Economic burden of amyotrophic lateral sclerosis: A Canadian study of out-of-pocket expenses
Bibliographic record
Abstract
This study quantifies the 'out-of-pocket' expenses incurred by individuals with amyotrophic lateral sclerosis (ALS) and their families, explores cost-driving factors and describes the current state of financial support in a Canadian cohort. We performed structured cost-of-illness interviews with 50 consecutive ALS patients and family members detailing disease-specific factors, direct and indirect costs. Direct costs were divided into 'out-of-pocket' and 'government/non-profit organization (NPO) supported'. Results showed that the average annual direct cost per patient was $32,337, of which $19,574 (61%) was paid for out-of-pocket. The most significant direct cost was disease-related home renovations, which garnered minimal government or NPO support. The costs of mobility aids, medical expenses, and private personal support workers were also substantial. Higher out-of-pocket costs were associated with an ALS Functional Rating Scale gross motor subscore of ≤ 6 (p = 0.03), limb-predominant symptoms (p = 0.04) and > 4 h/week of personal support care (p = 0.005). Annual indirect costs (lost wages) for patients with ALS and family members providing care were $56,821. In conclusion, this study quantified the substantial personal economic impact of ALS as measured by non-reimbursed, out-of-pocket expenses. Mobilization of additional resources for ALS patients and families is required to soften the economic burden of this disabling disease.
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How this classification was reachedexpand
Full frame distilled prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.
Codex and Gemma teacher scores by category
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.001 | 0.000 |
| Meta-epidemiology (narrow) | 0.001 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.000 |
| Bibliometrics | 0.001 | 0.000 |
| Science and technology studies | 0.000 | 0.000 |
| Scholarly communication | 0.000 | 0.000 |
| Open science | 0.000 | 0.000 |
| Research integrity | 0.000 | 0.000 |
| Insufficient payload (model declined to judge) | 0.000 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one teacher head, not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".