MS Doctors, Nurses in UK Struggle With Marking Transition to SPMS

Marisa Wexler, MS avatar

by Marisa Wexler, MS |

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Among healthcare providers in the U.K., considerable variation exists in marking the transition from relapsing-remitting multiple sclerosis (RRMS) to secondary progressive multiple sclerosis (SPMS), a study based on interview responses reports.

Neurologists and nurses with MS specialties also expressed a reluctance to label patients as having progressed to SPMS due to a lack of available treatments for this MS form, its researchers wrote.

“A striking issue emerging early in this research was the marked divergence in respondents’ definitions of SPMS, and varying responses to the use of and challenges in defining subgroups of SPMS,” they noted, adding this problem “is not unique to the United Kingdom.”

The study, “Transition to secondary progressive multiple sclerosis: The consequences for patients and healthcare systems, a healthcare professional survey,” was published in Health Science Reports.

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Most people with MS are initially diagnosed with RRMS, which is characterized by periods of sudden symptom worsening (relapses) interspersed with periods where symptoms are less severe (remission). As time goes on, nearly all these patients progress to SPMS and disease symptoms that gradually worsen over time.

The point at which RRMS turns into SPMS, however, is never clear-cut; labels for both forms are largely descriptive. Patients need be followed for months or years to make sure the disease is continuing to worsen without relapses, and it’s not uncommon for people with confirmed SPMS to experience occasional relapses.

“The transition to SPMS remains challenging to identify as it occurs due to the gradual nature of disease progression, the fluctuations of all stages of MS, and confounders including comorbidities,” the researchers wrote. “Transition is often identified retrospectively, following a period of diagnostic uncertainty.”

Marking this transition also has consequences: whereas there are over a dozen approved disease-modifying therapies (DMTs) for RRMS, far fewer are available for SPMS. (DMTs work to alter the course of a disease, such as by lowering relapse risk or preventing disability accumulation.)

To learn more about the management of patients transitioning from RRMS to SPMS, a U.K. research team conducted semi-structured interviews with 20 MS clinicians (neurologists and nurses) in England and Scotland between November 2018 and March 2019. The scientists then summarized major themes that emerged from these phone discussions.

Clinicians generally noted that the transition from RRMS to SPMS can be taxing for patients and take a toll on their relationships.

“Considerable physical challenges mean daily tasks become increasingly difficult and necessitate adaptations to patients’ homes,” the researchers wrote. “Respondents noted that increased dependence on relatives or friends as caregivers has personal implications … as well as financial implications, since most patients with SPMS cannot continue full-time employment.”

Most of these specialists — 13 of 20 — reported that their clinic has no standardized procedure in use to diagnose the transition to SPMS.

“Although respondents agreed that the decision to label a patient as SPMS is based on assessment in clinic, this could be highly subjective and is likely not based on the same consistent criteria across clinics,” the researchers wrote, noting that the substantial variation in symptoms among patients makes it impossible to identify a “transition point” between the two MS types.

Some of the clinicians “appeared to associate, whether consciously or not,” increased disability with SPMS, the researchers noted, like assuming any patient requiring a wheelchair has SPMS. However, while disability does tend to be more advanced in these people, SPMS “is not defined by and does not define these higher levels of disability,” they wrote.

Many of the clinicians also expressed a hesitancy in labeling patients with SPMS. “Respondents estimated that an average of 12% of patients with RRMS should truly be classified as SPMS, highlighting the caution in identifying SPMS,” the study noted.

A lack of available SPMS treatments was cited as a major factor for this hesitancy, with clinicians indicating that better therapy options would likely change how SPMS is handled in their clinics.

“This diagnostic challenge may be unique to MS; very few other diagnoses are likely as heavily influenced by a lack of available treatment options,” the researchers wrote.

Having more available SPMS therapies, and including such treatments within the U.K.’s public health reimbursement schemes, “would provide clear clinical rationale for identifying SPMS earlier, removing the deterrent and increasing [clinicians’] confidence to confirm SPMS,” they added.

In agreement, a number of respondents expressed a need for clearer transition guidelines, but fewer neurologists — those most likely to be prescribing medications — favored “stricter definitions.” These professionals “may be influenced to a greater extent by the limited DMT options following transition to SPMS,” the researchers noted, adding this could change as more therapies for SPMS are “licensed and reimbursed.”

SPMS treatment was described as currently tending to follow one of two patterns: either prescribing a new DMT, or continuing on a current treatment until strong evidence of worsening disability in the absence of inflammatory disease activity exists.

Respondents also noted that many specialist clinics only see patients actively using a DMT due to limited clinic capacity. Most, 13 of 20, acknowledged that SPMS patients are less likely to be under an MS neurologist’s or specialist nurse’s care than an RRMS patient, because “the treatable nature of RRMS” demands more monitoring.

As such, SPMS patients after stopping DMT use can be left with “a feeling of abandonment or neglect,” the researchers wrote.

Overall, “there is a clear need to address the current heterogeneity in clinical practice, ultimately through a more structured and standardized approach to [classifying] MS and consensus guidelines on treatment to ensure patients can maximally benefit as the treatment options for SPMS evolve,” the study concluded.

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