Specialty Pharmacies See Patients With MS Often but Lack the Right Tool to Measure Decline

Specialty pharmacies play a growing role in monitoring people with multiple sclerosis (MS) between neurology visits, but no existing patient-reported outcome measure (PROM) is brief, broad, and interpretable enough to fit smoothly into that workflow, according to a narrative review presented at inSPire2026, the National Association of Specialty Pharmacy's annual meeting. The review examined published evidence on specialty pharmacy services and outcomes in MS and evaluated available PROMs against 3 criteria: feasibility, relevance, and actionability.

Detection Gap Leads to Under-Captured Symptoms

Monitoring disease stability in MS is difficult even under ideal conditions, the authors noted, particularly with progression independent of relapse activity (PIRA) and smoldering MS—forms of gradual decline that can go uncaptured during routine, infrequent clinical visits. Specialty pharmacies already have frequent contact with people with MS (PwMS) through medication access support, education, refill coordination, and adherence and safety monitoring. In principle, those touchpoints could catch early symptom change that an infrequent neurology visit would miss. In practice, the authors found, the tools to do that within a specialty pharmacy workflow remain unclear.

What the Evidence Shows Specialty Pharmacies Already Do

The reviewers searched PubMed and major specialty pharmacy conference portals, screening 46 full-text articles and conference abstracts and drawing 28 directly describing specialty pharmacy services or programs into their narrative synthesis, with literature included through December 2025. That evidence, drawn largely from health-system specialty pharmacies, clustered into 3 service domains:

• Medication access and affordability, including benefits investigations, prior authorization support, and financial assistance that shortens time to therapy initiation
• Medication education, distribution, and adherence, including structured refill coordination that sustains persistence
• Medication monitoring and intervention, including routine safety and tolerability checks at regular touchpoints

The third domain was also the review's weak point: patient-reported concerns are often documented using simple, single-item measures that the authors said limit how much can actually be learned about effectiveness.

The authors evaluated 11 PROMs used in MS care, from brief generic instruments like the EQ-5D and Fatigue Severity Scale to lengthy, MS-specific tools like the Multiple Sclerosis Quality of Life Inventory (MSQLI) and MSQoL-54. The trade-off ran in a consistent direction: instruments broad enough to cover multiple symptom domains, such as MSQLI's coverage of 9 domains including cognition, mood, and bowel and bladder function, took 81 to 138 items and more than 20 minutes to complete, while quicker, single-domain tools like the Patient-Determined Disease Steps scale took under 6 minutes but captured only disability level.

Scoring added another obstacle. Several of the broader instruments require complex, multi-value scoring that the authors said limits real-time interpretation and same-visit pharmacist intervention. Across every PROM they reviewed, at least 1 of feasibility, relevance, or actionability fell short, meaning no single existing tool was built for a specialty pharmacy visit.

Toward a Purpose-Built Tool

Rather than adopting an existing scale wholesale, the authors suggested specialty pharmacies may be better served by brief, 10-minute-or-under tools purpose-built for their workflow. This could mean curated composites drawn from validated instruments or structured domain-based screening that flags concerning changes without requiring a full multi-domain battery.

The goal, they wrote, is earlier identification of decline that could then be routed back to neurology teams for follow-up, closing a gap that exists not because specialty pharmacies lack contact with patients, but because they lack a measurement tool matched to the contact they already have.

“Most available evidence, which is largely from health-system specialty pharmacies, indicates that specialty pharmacies play a critical role in longitudinal MS care, supporting access, adherence, and safety through frequent
patient interactions,” the authors wrote. “Despite these contributions, practical tools to monitor symptom change or early progression are limited, and existing PROMs often fall short in feasibility, relevance, and actionability for specialty pharamacy workflows.”

Reference

Wash A, Hickman A, Skrtic A, et al. Monitoring multiple sclerosis in specialty pharmacy: A narrative review of services, outcomes, & patient-reported outcome measures. Presented at: NASP inSPire2026; September 22-25, 2026; National Harbor, MD. PSP78.