ALS patients, caregivers prefer team-based care model, new survey finds
Respondents cited ALS expertise and coordinated care as top priorities
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- ALS patients and caregivers prefer care models where multiple specialists are seen during the same visit.
- They prioritize team-based care and ALS expertise over factors like visit length or cost.
- Researchers say policy changes may be needed to support this preferred multidisciplinary care model.
People living with amyotrophic lateral sclerosis (ALS) in the U.S. generally prefer care models where they can see multiple healthcare providers during the same visit, rather than only regularly seeing a neurologist who refers them to other doctors as needed, according to a new study.
The findings have important implications for how ALS care is delivered and reimbursed under current insurance coverage systems, the researchers said.
Study explores how ALS care models align with patient preferences
The study, “Preferences for Healthcare Delivery in Amyotrophic Lateral Sclerosis (ALS): A Survey of Patients and Caregivers in the United States,” was published in The Patient – Patient-Centered Outcomes Research.
ALS is a neurological disorder that causes rapidly progressive muscle weakness, which can affect many aspects of a person’s physical and psychological well-being.
People with ALS are generally advised to receive multidisciplinary care, involving different specialists to address specific issues. However, there are different ways for healthcare systems to deliver this type of care.
Traditionally, ALS patients regularly consult a neurologist, who can refer them to other specialists as needed. In recent years, however, two other models of ALS care have gained popularity in the U.S.
In the triage model, patients also regularly see a neurologist, but instead of being referred out to make new appointments with other specialists, they are referred on the same day to specialists at the same center during the same visit. The so-called non-triage model takes this a step further, with patients seeing all of their specialists at each visit, even if they don’t have a specific concern to address with a particular provider.
Each of these care models has benefits and drawbacks. For example, the triage model allows patients to complete multiple appointments in fewer visits, but the visits themselves are usually longer. The non-triage model allows patients more face time with all their providers, but it also requires even longer visits and may create higher costs or financial challenges for care centers compared with traditional models.
Survey examines preferences among ALS patients and caregivers
In this study, U.S. scientists conducted a survey to understand which of these three care models are most preferred by people living with ALS. The survey was answered by 254 people with ALS and 124 caregivers. The researchers noted that responses from patients and caregivers were generally similar, with no significant differences in preferences.
Most respondents (83.6%) reported receiving care via a non-triage model, where they see all their specialists at each visit.
Survey results showed respondents clearly preferred this model if given the choice. About 83% of respondents ranked this model as their first choice, and about 65% chose the triage model as their second choice. The traditional care model was generally least preferred.
“Respondents clearly preferred a non-triage model if given the choice,” the researchers wrote. A caveat to this finding is that most survey respondents were already receiving care through a non-triage model. The researchers cautioned that the survey might be biased because respondents may prefer their current care over other options.
When asked about specific aspects of ALS care that were most important to them, respondents rated ALS expertise and team-based care as the most important features, which the researchers said was consistent with the preference for the non-triage care model.
These aspects were generally rated as more important than other factors, including access to clinical trials, the length or number of care visits, and the cost of care.
Patients prioritize ALS expertise and team-based care
“Our study indicates that [people with ALS] may be willing to pay more, make more frequent visits or have longer visits to assure clinical expertise and team-based care,” the researchers wrote.
The researchers noted that the current U.S. healthcare system does not offer an incentive for centers to provide care via the non-triage model. In fact, current structures often make it difficult to provide such models while also keeping centers financially sustainable, because insurance companies typically pay per visit regardless of how many providers are seen at each visit.
Based on their survey, the researchers called for policy changes to help ALS centers cover the cost of multidisciplinary care preferred by people living with the disease.
