Unmet MS care needs prevalent among patients in Italy: Survey

Almost all of the nearly 700 people with multiple sclerosis (MS) in Italy who responded to a patient survey reported at least one unmet MS care need — ranging from insufficient access to primary care, social interactions, assistance, doctor-patient relationships, and information about the neurodegenerative disease.

More than half of the respondents reported six or more unmet MS care needs.

Using an artificial intelligence-based analysis, the survey’s researchers identified four clusters of patients based on their distinct unmet needs. Patients with more unmet needs in the so-called private sphere, whose concerns were related to assistance and social interactions, were generally found to be older and less educated, with greater disability and lower life quality than other respondents.

“Our study highlights the significant prevalence of unmet needs among PwMS [people with MS], pointing to potential shortcomings within the healthcare system,” the researchers wrote. “Addressing these unmet needs on an individual basis has the potential to significantly improve the overall quality of life of PwMS.”

The study, “Identifying definite patterns of unmet needs in patients with multiple sclerosis using unsupervised machine learning,” was published in the journal Neurological Sciences.

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As a chronic and progressive disease, MS requires long-term multidisciplinary management. When living with MS, each patient will have different needs based on the individual’s own level of disability and disease severity, life circumstances, and personality, according to the researchers.

“Whenever these needs remain unaddressed, patients are left alone to struggle with the difficulties of their illness,” the team wrote.

The final goal should be the implementation of an integrated, person-centred path of care.

As such, it is important to better understand MS patient needs — and which ones are not being adequately met — to optimize care.

“The final goal should be the implementation of an integrated, person-centred path of care,” the researchers wrote.

To learn more about the unmet needs of MS patients in Italy, the team of scientists — all but one from institutions across the country — deployed an anonymous survey. It was sent via email to 1,764 MS patients seen across six MS centers in the country. Of them, 690 responded fully and were included in the analysis. The responders had a mean age of 43.6 and most (70%) were women.

The questionnaire particularly probed patients’ perceptions about unmet needs across five domains: access to information, access to primary care, social life, assistance, and doctor-patient relationships. A computer algorithm then was used to analyze the collected data and identify patterns of unmet MS care needs among the patients.

Nearly all respondents (about 95%) reported at least one unmet need, and 58% said they had six or more. Across the five evaluated domains, access to primary care was considered the major contributor to the total number of unmet needs, followed by social aspects and the need for assistance and support.

Such a finding calls attention to “potential deficiencies in the healthcare system’s ability to manage a chronic disease such as MS,” the researchers wrote.

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Older age, longer MS duration tied to more unmet needs among patients

An artificial intelligence algorithm was then employed to cluster patients based on their survey responses; it identified four distinct clusters.

Cluster 1, referring to “information-seekers with few unmet needs,” included the 24% of patients who had a high number of unmet needs related to information access, but few in other domains. A similar proportion of people were in cluster 2, named “high unmet needs” and characterized by many unmet needs across all domains.

Individuals with high unmet needs related to self-care, autonomy, and social life (about 16%) were grouped into cluster 3, dubbed “socially and assistance dependent.” Finally, cluster 4 involved the approximately 36% of people with generally low unmet needs across the five domains.

The two main drivers responsible for these groupings were the “public sphere,” referring to how much a person had access to information and care, and the “private sphere,” or a person’s need for assistance and social interactions.

Generally speaking, five factors — older age, lower educational attainment, longer MS duration, greater disability, and a progressive disease course — were associated with clusters 2 and 3, meaning those with more unmet needs in the private sphere.

Those patients also were less likely to be satisfied with their MS treatment and had a significantly lower life quality than patients in clusters 1 and 4.

“As it is plausible that a better clinical condition may alleviate some needs, it is essential to address the potential disparities in care for patients with more severe conditions,” the researchers wrote.

“Doctors should play a key role in bridging this gap by implementing personalized treatment strategies and providing comprehensive support services,” they added.

Still, the scientists emphasized that demographic and clinical factors alone are not enough to fully explain the differences in these four groups of patients, particularly as they relate to the public sphere.

“It is imperative for future research to further explore the underlying factors contributing to the differences among the clusters, thus allowing for a more accurate definition,” the team wrote, noting that such additional information would “enable highly customized unmet needs resolution strategies based on individual characteristics.”

“Unexplored variables, such as cognitive status and socioeconomic factors, could play a role in shaping unmet needs and should be further explored in future research,” the researchers concluded.