PRIME Education, LLC

Author Of 2 Presentations

Patient-Reported Outcomes and Quality of Life Poster Presentation

P1019 - Discordant patient and provider perceptions of care and shared decision-making practices in multiple sclerosis (ID 1765)

Speakers
Presentation Number
P1019
Presentation Topic
Patient-Reported Outcomes and Quality of Life

Abstract

Background

Optimal treatment outcomes and quality of life for patients with multiple sclerosis (MS) depend on shared learning, understanding, and decision-making between patients and neurology teams; however, system-, team-, and individual-level barriers pose challenges.

Objectives

As part of a quality improvement initiative, we identified areas of discordance between neurology providers’ (HCPs’) perceptions and patient-reported experiences in shared decision-making (SDM) and MS care.

Methods

From 03/2018–04/2019, we administered surveys to assess challenges, barriers, attitudes, and experiences of neurology teams caring for patients with MS (N=26) and their patients (N=162) at 15 MS clinics.

Results

HCPs believed that patients prioritized slowing disease progression (89% of providers) over other goals. Patients reported reducing relapses (78% of patients) and slowing disease progression (76%) as top treatment goals. Patient ratings and HCP estimates were discordant on factors most important to patients when making decisions about MS treatment: high efficacy (77% patient-reported vs 54% provider-estimated, p = 0.012), safety (65% vs 85%, p = 0.045), side effects (55% vs 85%, p = 0.004), delay of progression (54% vs 35%, p = 0.062), frequency of treatment (10% vs 27%, p = 0.023), oral route of administration (9% vs 8%, p >0.999), and frequency of laboratory testing (7% vs 0%, p = 0.235).

Differences were noted in patients’ and HCPs’ responses on the reasons MS patients do not participate in SDM more often: lack of time for SDM during appointments (49% patient-reported vs 36% HCP-estimated, p = 0.180), preference that the physician make treatment decisions (35% vs 48%, p = 0.147), and patients’ lack of knowledge about MS and available therapies (30% vs 12%, p = 0.048). Notably, 40% of patients reported they did not participate more in SDM because HCPs did not bring up SDM.

Post-program, patients set goals to monitor their MS symptoms closely and share them with their team (57%), take MS treatment as prescribed (47%), and talk with their MS team about treatment options (47%). MS teams committed to engaging their patients more frequently in SDM (65%), talking with their patients about wellness strategies (50%), and conducting more small-group patient education sessions (40%).

Conclusions

These findings reveal discordances between neurology HCP’s perceptions and patient-reported experiences in MS treatment decisions and identify opportunities to address gaps in SDM in MS care.

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Patient-Reported Outcomes and Quality of Life Poster Presentation

P1051 - Real world practice patterns and patient experiences related to off-site therapy infusions in Multiple Sclerosis (ID 1717)

Speakers
Presentation Number
P1051
Presentation Topic
Patient-Reported Outcomes and Quality of Life

Abstract

Background

With implementation of “site of care” policies in recent years, an increasing number of health plans now require patients with multiple sclerosis (MS) to receive their infused therapies at non-hospital outpatient centers. In a quality improvement (QI) initiative, we examined patients’, neurologists’, and infusions centers’ practices, perceptions, and barriers related to off-site infusion care following this shift.

Objectives

Assess (1) therapy adherence, administration, and adverse event (AE) monitoring at off-site infusion centers; (2) communication and care coordination between MS clinics and infusion centers; (3) provider and patient perceptions of infusion care; (4) barriers to optimal infusion care.

Methods

(1) Reviews of electronic medical records (EMRs) of MS patients (n = 100) in 3 large specialty clinics; and (2) surveys administered to providers from MS clinics [n = 15] and infusion centers [n = 33], and patients [n = 18].

Results

EMR reviews indicated that 53% of patients missed at least some of their infusions at off-site centers. The vast majority of patients (75%) identified scheduling as the greatest barrier to therapy adherence, however, only 50% of MS clinic and 5% of infusion center providers considered scheduling a significant barrier to care. Discordances were also observed on how often infusion-related details are being communicated, including frequently/very frequently sharing whether patients received their infusions as prescribed (33% MS clinics vs 74% infusion centers; p=.008) and a numerical difference in whether patients had infusion-related AEs (40% vs 61%; p=.180). In fact, infusion notes were only documented for 29% of infusions and over half of patients had infusion-related AEs. Providers also differed on their perceptions of the following as significant barriers to care: lack of time to communicate (80% MS clinic vs 10% infusion center; p<.001); ineffective procedures for bidirectional communication (73% vs 3%; p<.001); oversights in regular communication and follow-up (67% vs 17%; p=.001); and insufficient sharing of patient information (74% vs 17%; p=<.001).

Conclusions

Our findings reveal opportunities to optimize MS infusion care, including improved scheduling procedures and patient monitoring. In addition, aligning communication and care coordination practices among providers has the potential to enhance the quality of care for MS patients receiving their infusions off-site.

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