Preliminary Analysis of the FACIT-COST Scale Among People Living with Amyotrophic Lateral Sclerosis (ALS)
Astrid Grouls1, Laura Chisholm2, Ilene Hollin3, Hristelina Ilieva4, Piera Pasinelli4, Terry Heiman-Patterson2
1Baylor College of Medicine, 2Temple University Lewis Katz School of Medicine, 3Temple University College of Public Health, 4ALS Weinberg Clinic
Objective:
Conduct preliminary analysis of the FACIT Group COmprehensive Score for financial Toxicity (FACIT-COST) scale for people living with ALS (PLWALS).
Background:
The financial burden and distress PLWALS face because of direct and indirect medical expenses have not been well understood.
Design/Methods:
PLWALS participating in a year longitudinal evaluation of objective financial expenses completed the FACIT-COST, self-rated global quality of life (QoL), Revised ALS Functional Rating Scale (ALSFRS-R) and additional questions on medical debt at the 6-month mark. The FACIT-COST is a patient-reported measure of subjective financial distress validated in the adult cancer and chronic disease populations, though not specifically ALS. Analysis was primarily descriptive.
Results:
Fifty-five PLWALS completed the midpoint survey. Average age was 65 years. Most respondents were Caucasian (51/55), married/partnered (44/55), male (36/55), and retired (44/55). Thirty-one respondents completed a bachelor’s or higher degree. Most respondents were insured through Medicare (36/55), followed by private insurance (11/55). The average self-assessed ALSFRS-R at the 6-month mark was 29 +/- 10.3. 25/55 respondents reported a QoL of at least 8/10. The average FACIT-COST score at 6 months was 27.9. Most (37/55) reported no financial impact (score >= 26), 16 mild (score 14-25), 2 moderate (score 1-13) and none with high impact (score 0). Eight respondents indicated their illness had been a financial hardship. Younger, less educated PLWALS with lower QoL ratings had higher FACIT-COST scores. Four respondents had borrowed money in the prior 6-month period. Five respondents had themselves or had family forgo medical care to accommodate ALS costs. Twelve respondents felt burdened by out-of-pocket costs.13 cut expenses or made sacrifices to meet out-of-pocket costs for ALS care.
Conclusions:
Despite most PLWALS measuring no or mild financial impact on the FACIT-COST scale, respondents regardless self-reported financial hardship, sacrifices made and forgone medical treatments. Alternative measures of financial toxicity may be more appropriate in this population.
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