Abstract Details

Title Preliminary Analysis of the FACIT-COST Scale Among People Living with Amyotrophic Lateral Sclerosis (ALS)

Topic Neuromuscular and Clinical Neurophysiology (EMG)

Presentation(s) P11 - Poster Session 11 (8:00 AM-9:00 AM)

Poster/Presentation
Number 11-011

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.

Authors/Disclosures
Terry D. Heiman-Patterson, MD (Temple University Lewis Katz School of Medicine) PRESENTER	Dr. Heiman-Patterson has received personal compensation in the range of $500-$4,999 for serving as a Consultant for MTPA. Dr. Heiman-Patterson has received personal compensation in the range of $500-$4,999 for serving as a Consultant for Amylyx. Dr. Heiman-Patterson has received personal compensation in the range of $0-$499 for serving as a Consultant for novartis. Dr. Heiman-Patterson has received personal compensation in the range of $500-$4,999 for serving as a Consultant for biogen. The institution of Dr. Heiman-Patterson has received research support from MTPA. The institution of Dr. Heiman-Patterson has received research support from State of Pennsylvania . The institution of Dr. Heiman-Patterson has received research support from ALS Association. The institution of Dr. Heiman-Patterson has received research support from ALS United. The institution of Dr. Heiman-Patterson has received research support from ALS Hope Foundation.
Astrid Grouls, MD	The institution of Dr. Grouls has received research support from ALS Association.
Laura Chisholm (Temple University)	Laura Chisholm has nothing to disclose.
Ilene Hollin (Temple University)	The institution of Ilene Hollin has received research support from MT Pharma. The institution of Ilene Hollin has received research support from PCORI. The institution of Ilene Hollin has received research support from PCORI. The institution of Ilene Hollin has received research support from Shriners Hospital for Children. The institution of Ilene Hollin has received research support from NIH/NIDDK. The institution of Ilene Hollin has received research support from NIH/NHLBI. Ilene Hollin has received personal compensation in the range of $5,000-$9,999 for serving as a Consultant with New Horizons, a division of Global Health Labs.
Hristelina S. Ilieva, MD (ALS Weinberg Clinic)	The institution of Dr. Ilieva has received research support from ALSA. Dr. Ilieva has received personal compensation in the range of $0-$499 for serving as a reviewer with DOD.
Piera Pasinelli	The institution of Dr. Pasinelli has received research support from NIH-NINDS.

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