Health Union

Author Of 2 Presentations

Patient-Reported Outcomes and Quality of Life Poster Presentation

P1002 - “Don’t give up on us!”: Findings from progressive MS patients on disease-modifying therapy (ID 94)

Speakers
Presentation Number
P1002
Presentation Topic
Patient-Reported Outcomes and Quality of Life

Abstract

Background

There are few disease-modifying therapy (DMT) options for patients with progressive forms of multiple sclerosis (MS), and HCPs may feel limited in their ability to treat this subset of MS patients. However, these patients may continue to seek treatment alternatives to slow disease progression and reduce symptom severity.

Objectives

To examine progressive MS patients’ interests in treatment and clinical trials as well as their perceptions of HCP interactions, for helping HCPs to better meet patient needs.

Methods

The Multiple Sclerosis In America survey (MSIA) was fielded by Health Union, LLC in 2019 to patients with MS via online sources including MultipleSclerosis.net. Survey questions included symptoms, relapse experience, HCP interaction, DMT usage, and quality of life measures. Descriptive statistics and comparison tests were used to examine patient reported outcomes.

Results

The 845 patients with a progressive form of MS currently using a DMT were included in the analysis (73.4% female, 92.5% Caucasian, mean age 56.3 years); 69.1% diagnosed within past 20 years, with 76.3% initially diagnosed RRMS. 41.3% currently PPMS, 58.7% SPMS, 51.0% on disability, 99.5% had some form of health insurance, and 73.7% seeing a MS specialist. 211 reported that their MS was controlled on current treatment plan and 634 indicated their MS was not controlled, also reporting more symptoms and relapses. Compared to those controlled on DMT, those not controlled report not having regular MRIs to track progression and feel their HCP does not do as well explaining treatment options, reviewing MRI results, discussing quality of life on treatment, or understanding their questions. Despite differences in perceived level of control, more than half actively seek out information about latest MS medications. Those not controlled on their DMT are more interested in MS clinical trial participation (68.8%), as well as apt to visit prescription medication websites (32.3%) and more likely to seek other patients’ opinions of a medication online (41.5%), than their counterparts.

Conclusions

Our study illustrates how progressive MS patients are hopeful and engaged in finding a treatment for controlling their symptoms and progression, however some, feel like they have been overlooked by their HCP. Given the positive outcomes of using a DMT among progressive MS patients, HCPs should continue to work with patients to search for effective treatment options for them, as well as provide needed support and validation.

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Patient-Reported Outcomes and Quality of Life Poster Presentation

P1068 - Use of disease modifying therapies for improved quality of life among progressive MS patients (ID 93)

Speakers
Presentation Number
P1068
Presentation Topic
Patient-Reported Outcomes and Quality of Life

Abstract

Background

While there are currently 17 approved disease-modifying therapies (DMTs) for patients with relapsing forms of multiple sclerosis (MS), for progressive forms of MS there are limited options. HCPs may prescribe DMTs for progressive patients off-label with the goal of slowing disease progression. However, outcomes for off-label DMT use in progressive MS are not well understood.

Objectives

To leverage patient-reported outcomes for understanding how progressive patients are responding to DMT and how their use affects quality of life. To help HCPs better discern the efficacy of DMT use in progressive patients.

Methods

The Multiple Sclerosis In America survey (MSIA) was fielded by Health Union, LLC in 2019 to patients with MS via online sources including MultipleSclerosis.net. Survey questions included symptoms, relapse experience, HCP interaction, DMT usage, and quality of life measures. Descriptive statistics and comparison tests were used to examine outcomes.

Results

1,531 patients with a progressive form of MS were included in the analysis (76.3% female, 92.6% Caucasian, mean age 58.1 years); 41.0% PPMS, 59.0% SPMS, 47.2% on disability, and 98.7% had health coverage. 686 patients were not currently using a DMT, and among the 845 currently using, 211 described their MS as controlled on their current treatment plan, and 634 reported their MS not controlled. Progressive MS patients were similar in how they reported their disability as moderate or severe. Those controlled on a DMT were less likely to report depression as a recent symptom (39.8% vs. 53.7%) and cited fewer cerebral symptoms in the past month than their counterparts (75.8% vs. 84.2%). Additionally, controlled patients report shorter relapse durations and unchanged or fewer lesions on recent MRIs. 53.6% of progressive MS patients who described their MS as controlled felt in control of their life despite their MS and 63.5% were confident in how they are managing their MS. Conversely, 61.7% of progressive patients who were not using a DMT or reported uncontrolled MS on a DMT felt their MS had negatively impacted overall quality of life, and 39.6% cited its impact on their emotional well-being.

Conclusions

The survey results demonstrate positive outcomes for a subset of patients with progressive MS currently using a DMT, as compared to their counterparts who do not use a DMT or report their MS uncontrolled. HCPs may find these results encouraging; future research should seek to learn why DMT use is not successful for all progressive patients and develop alternative therapies for those whose MS is uncontrolled. Future research should seek to understand why DMT use is not successful for all progressive patients and develop alternative therapies for those whose MS is uncontrolled.

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Presenter Of 2 Presentations

Patient-Reported Outcomes and Quality of Life Poster Presentation

P1002 - “Don’t give up on us!”: Findings from progressive MS patients on disease-modifying therapy (ID 94)

Speakers
Presentation Number
P1002
Presentation Topic
Patient-Reported Outcomes and Quality of Life

Abstract

Background

There are few disease-modifying therapy (DMT) options for patients with progressive forms of multiple sclerosis (MS), and HCPs may feel limited in their ability to treat this subset of MS patients. However, these patients may continue to seek treatment alternatives to slow disease progression and reduce symptom severity.

Objectives

To examine progressive MS patients’ interests in treatment and clinical trials as well as their perceptions of HCP interactions, for helping HCPs to better meet patient needs.

Methods

The Multiple Sclerosis In America survey (MSIA) was fielded by Health Union, LLC in 2019 to patients with MS via online sources including MultipleSclerosis.net. Survey questions included symptoms, relapse experience, HCP interaction, DMT usage, and quality of life measures. Descriptive statistics and comparison tests were used to examine patient reported outcomes.

Results

The 845 patients with a progressive form of MS currently using a DMT were included in the analysis (73.4% female, 92.5% Caucasian, mean age 56.3 years); 69.1% diagnosed within past 20 years, with 76.3% initially diagnosed RRMS. 41.3% currently PPMS, 58.7% SPMS, 51.0% on disability, 99.5% had some form of health insurance, and 73.7% seeing a MS specialist. 211 reported that their MS was controlled on current treatment plan and 634 indicated their MS was not controlled, also reporting more symptoms and relapses. Compared to those controlled on DMT, those not controlled report not having regular MRIs to track progression and feel their HCP does not do as well explaining treatment options, reviewing MRI results, discussing quality of life on treatment, or understanding their questions. Despite differences in perceived level of control, more than half actively seek out information about latest MS medications. Those not controlled on their DMT are more interested in MS clinical trial participation (68.8%), as well as apt to visit prescription medication websites (32.3%) and more likely to seek other patients’ opinions of a medication online (41.5%), than their counterparts.

Conclusions

Our study illustrates how progressive MS patients are hopeful and engaged in finding a treatment for controlling their symptoms and progression, however some, feel like they have been overlooked by their HCP. Given the positive outcomes of using a DMT among progressive MS patients, HCPs should continue to work with patients to search for effective treatment options for them, as well as provide needed support and validation.

Collapse
Patient-Reported Outcomes and Quality of Life Poster Presentation

P1068 - Use of disease modifying therapies for improved quality of life among progressive MS patients (ID 93)

Speakers
Presentation Number
P1068
Presentation Topic
Patient-Reported Outcomes and Quality of Life

Abstract

Background

While there are currently 17 approved disease-modifying therapies (DMTs) for patients with relapsing forms of multiple sclerosis (MS), for progressive forms of MS there are limited options. HCPs may prescribe DMTs for progressive patients off-label with the goal of slowing disease progression. However, outcomes for off-label DMT use in progressive MS are not well understood.

Objectives

To leverage patient-reported outcomes for understanding how progressive patients are responding to DMT and how their use affects quality of life. To help HCPs better discern the efficacy of DMT use in progressive patients.

Methods

The Multiple Sclerosis In America survey (MSIA) was fielded by Health Union, LLC in 2019 to patients with MS via online sources including MultipleSclerosis.net. Survey questions included symptoms, relapse experience, HCP interaction, DMT usage, and quality of life measures. Descriptive statistics and comparison tests were used to examine outcomes.

Results

1,531 patients with a progressive form of MS were included in the analysis (76.3% female, 92.6% Caucasian, mean age 58.1 years); 41.0% PPMS, 59.0% SPMS, 47.2% on disability, and 98.7% had health coverage. 686 patients were not currently using a DMT, and among the 845 currently using, 211 described their MS as controlled on their current treatment plan, and 634 reported their MS not controlled. Progressive MS patients were similar in how they reported their disability as moderate or severe. Those controlled on a DMT were less likely to report depression as a recent symptom (39.8% vs. 53.7%) and cited fewer cerebral symptoms in the past month than their counterparts (75.8% vs. 84.2%). Additionally, controlled patients report shorter relapse durations and unchanged or fewer lesions on recent MRIs. 53.6% of progressive MS patients who described their MS as controlled felt in control of their life despite their MS and 63.5% were confident in how they are managing their MS. Conversely, 61.7% of progressive patients who were not using a DMT or reported uncontrolled MS on a DMT felt their MS had negatively impacted overall quality of life, and 39.6% cited its impact on their emotional well-being.

Conclusions

The survey results demonstrate positive outcomes for a subset of patients with progressive MS currently using a DMT, as compared to their counterparts who do not use a DMT or report their MS uncontrolled. HCPs may find these results encouraging; future research should seek to learn why DMT use is not successful for all progressive patients and develop alternative therapies for those whose MS is uncontrolled. Future research should seek to understand why DMT use is not successful for all progressive patients and develop alternative therapies for those whose MS is uncontrolled.

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