MS Association

Author Of 3 Presentations

Internet and Social Media Poster Presentation

P0667 - The Dutch MS Patient Voice Survey: The search for information. (ID 1745)

Speakers
Presentation Number
P0667
Presentation Topic
Internet and Social Media

Abstract

Background

Shared decision-making is a key aspect in healthcare and patients are motivated to take ownership of their own lifestyle changes. Informing patients with multiple sclerosis (MS), sharing knowledge, and coaching are the key objectives of patient advocacy organizations. Gathering patient insights on disease burden and interests will help patient organizations and other stakeholders to support MS patients in the Netherlands.

Objectives

The Dutch MS Patient Voice Survey aims to obtain insights in the role and use of different media and topics of interest split by MS phenotype and patients age.

Methods

From June until August 2019, 1029 MS patients participated in this on-line survey. Dutch patient advocacy organizations, MS association Netherlands and the National MS Foundation, invited participants to fill in the survey. The survey consist of three parts: 1. characteristics of disease phenotype and activity, 2. influence of the disease on daily life, and 3. information gathering and needs. Results from the Part 3 is reported in this abstract.

Results

Of the 1029 participants, 75% were female, 25% male. The participants were split by reported phenotype: clinically isolated syndrome/Benign (CIS/B) 4%, relapsing-remitting MS (RRMS) 45%, primary-progressive MS (PPMS) 18%, secondary-progressive MS (SPMS) 23%, and not reported 10%. Participants showed the highest interest in information about new treatments (75%), MS as a disease (64%), and lifestyle (51%). Topics of interest were influenced by age and did not vary by phenotype. Younger patient were most interested in MS and work, pregnancy and children while elderly patients have a high interest in how to stay mobile. 80% to 85% of the patients spend more than one hour a day online. There is a significant correlation between age and time spend online. Facebook is most frequent used (41%), mainly by younger patients. Snapchat is only use by 7% of the patients. Of the MS patients, 78% read daily newspapers and 39% read magazines (weekly or monthly).

Conclusions

Online information is an important source of information, especially Facebook. MS patient organizations, healthcare professionals and other stakeholders should keep in mind that some online information is not fact-checked and might misinform patients, which could influence their behavior. Most MS patients read local newspapers. Topics of interest depend mainly on age, suggesting that information should be tailored to patient age groups to fit their specific information needs.

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Patient-Reported Outcomes and Quality of Life Poster Presentation

P1057 - The Dutch MS Patient Voice Survey: impact of disease on daily life. (ID 1736)

Speakers
Presentation Number
P1057
Presentation Topic
Patient-Reported Outcomes and Quality of Life

Abstract

Background


Shared decision-making is a key aspect in healthcare and patients are motivated to take ownership of their own lifestyle changes. Informing patients with multiple sclerosis (MS), sharing knowledge, and coaching are some key objectives of patient advocacy organizations. Gathering patient insights on disease burden and interests will help patient organizations and other stakeholders to support MS patients in the Netherlands.

Objectives

This survey aimed at gathering insights on the symptom development, the impact of MS on activities of daily living (ADL) in relation to (co) mediation use and MS phenotype.

Methods

From June until August 2019, 1029 MS patients participated in this on-line survey. Dutch patient advocacy organizations, MS association Netherlands and the National MS Foundation, invited participants to fill in the survey. The survey consist of three parts: 1. characteristics of disease phenotype and activity, 2. influence of the disease on daily life, and 3. information gathering and needs. The results of part two are shown.

Results

Of the 1029 participants, 75% were female. The participants split by phenotype: clinically isolated syndrome/Benign (CIS/B) 4%, relapsing-remitting MS (RRMS) 45%, primary-progressive MS (PPMS) 18%, secondary-progressive MS (SPMS) 23%, and not reported 10%. The most frequently reported symptoms were; difficulties walking (85%), decline in overall condition (79%) and sensory problems (74%). The kind of symptoms and how they change over time differed between MS phenotypes. The impact on ADL showed a decline in meeting family (27%), ability to perform household tasks (34%) and an increased in family dependence (41%) for SPMS patients. Most PPMS (64%) and SPMS (68%) patients did not use disease-modifying therapies (DMTs) but use more other types of medication. A higher EDSS score correlates with a higher number of doctor’s appointments.

Conclusions

There is a range of MS symptoms that affect ADL and social life. The burden of disease and progression of specific symptoms differ strongly per phenotype, with the PPMS and SPMS patients reporting a higher burden of disease and impact on ADL. The majority of the PPMS and SPMS patients do not use DMTs. Importantly, both PPMS and SPMS groups reported a decline in functionality and increase in symptomatic treatment, which highlights the burden of disease and a potential medical need in these patients.

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Patient-Reported Outcomes and Quality of Life Poster Presentation

P1058 - The Dutch MS Patient Voice Survey: Impact of Multiple Sclerosis on daily life activities; characteristics of disease phenotype and treatment (ID 1710)

Speakers
Presentation Number
P1058
Presentation Topic
Patient-Reported Outcomes and Quality of Life

Abstract

Background

Shared decision-making is a key aspect in healthcare and patients are motivated to take ownership of their own lifestyle changes. Informing patients with multiple sclerosis (MS), sharing knowledge, and coaching are some key objectives of patient advocacy organizations. Gathering patient insights on disease burden and interests will help patient organizations and other stakeholders to support MS patients in the Netherlands.

Objectives

The Dutch Patient Voice Survey aims to obtain insights in relapses, relapse recovery, changes in Expanded Disability Status Scale (EDSS), and medication use per phenotype through an online patient survey (part 1 out of 3).

Methods

From June until August 2019, 1029 MS patients participated in this on-line survey. Dutch patient advocacy organizations, MS association Netherlands and the National MS Foundation, invited participants to fill in the survey. The survey consist of three parts: 1. characteristics of disease phenotype and activity, 2. influence of the disease on daily life and 3. information gathering and needs. The results of part one are shown.

Results

Of the 1029 participants, 75% were female, 25% male. The participants were split by reported phenotype: clinically isolated syndrome/Benign (CIS/B) 4%, relapsing-remitting MS (RRMS) 45%, primary-progressive MS (PPMS) 18%, secondary-progressive MS (SPMS) 23%, and not reported 10%. Average self-reported EDSS score was higher for patients with PPMS and SPMS than for other phenotypes. Average time since diagnose; CIS/B (4.9y), RRMS (3.9y), PPMS (4.5y), SPMS (5.2y), not reported (5.3y). In the past 12 months, 33% of the RRMS patients experienced a relapse and 59% did fully recover after a relapse. Of the SPMS group, 22% fully recovered after a relapse. Disease-modifying therapies (DMT) usage was 74% in the RRMS group, 32% in the SPMS group and 36% in the PPMS group.

Conclusions

Patient-reported disease experiences are an indication of the perceived burden of the disease. A large proportion of participants was female (75%) and 10% of all participants could not report their MS phenotype. SPMS and PPMS patients reported the highest EDSS score and lower relapse recovery rates while they use less DMTs compared to the RRMS patients, potentially indicating a medical need for effective DMTs in progressive disease. This survey provides information on the relation between perceived disease status and other relevant factors.

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