Capturing Financial Burden Concerns in an ALS Multidisciplinary Clinic

Area of Science:

• Neurology
• Health Services Research
• Patient Financial Advocacy

Background:

• Amyotrophic lateral sclerosis (ALS) imposes significant financial burdens on patients.
• The documentation and management of these financial concerns within ALS multidisciplinary clinics (MDCs) remain under-explored.

Purpose of the Study:

• To characterize the financial concerns of people living with ALS (pALS).
• To understand how these financial concerns are identified and documented by MDC staff.

Main Methods:

• Retrospective review of electronic medical records (EMR) for pALS with at least two MDC visits.
• Semi-structured interviews with MDC staff analyzed using rapid qualitative analysis.

Main Results:

• 67.2% of pALS had documented financial concerns, including insurance denials, medication costs, and caregiving expenses.
• Neurology notes and patient portals showed the most documentation, with social work and portal notes offering greater detail.
• Staff interviews identified insurance and equipment costs as primary concerns, with themes of insurance challenges, financial barriers to care, limited proactive discussions, and the crucial role of social work.

Conclusions:

• Financial concerns are common in ALS but inconsistently documented in EMRs, often identified via social work or asynchronous communication.
• Proactive financial screening and improved multidisciplinary documentation are essential for equitable, person-centered ALS care.