scholarly journals The Impact of Disease-Modifying Therapy Access Barriers on People With Multiple Sclerosis: Mixed-Methods Study

10.2196/11168 ◽  
2018 ◽  
Vol 20 (10) ◽  
pp. e11168 ◽  
Author(s):  
Kristina F Simacek ◽  
John J Ko ◽  
Debbie Moreton ◽  
Stefan Varga ◽  
Kristen Johnson ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Mixed Methods ◽  
Mixed Methods Study ◽  
Access Barriers ◽  
Disease Modifying Therapy ◽  
Disease Modifying ◽  
The Impact

scholarly journals The Impact of Disease-Modifying Therapy Access Barriers on People With Multiple Sclerosis: Mixed-Methods Study (Preprint)

2018 ◽  
Author(s):  
Kristina F Simacek ◽  
John J Ko ◽  
Debbie Moreton ◽  
Stefan Varga ◽  
Kristen Johnson ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Mixed Methods ◽  
Financial Burden ◽  
The United States ◽  
Insurance Companies ◽  
Access Barriers ◽  
Web Based ◽  
Disease Modifying ◽  
The Impact

BACKGROUND In the United States, people with relapsing-remitting multiple sclerosis (RRMS) can face difficulty accessing disease-modifying therapies (DMTs) because of insurance, pharmacy, or provider policies. These barriers have been associated with poor adherence and negative health outcomes. OBJECTIVE The goals of this study were to describe the overall occurrence of difficulties and delays associated with gaining access to DMTs among people with RRMS, to assess DMT adherence during periods of reduced access, and to contextualize the patients’ journey from receipt of a prescription for DMT to obtaining and taking their medication when faced with access barriers. METHODS We recruited US-based adults self-reporting RRMS from a Web-based health data-sharing social network, PatientsLikeMe. Individuals were invited to complete a Web-based survey if they reported a diagnosis of RRMS and were prescribed a DMT for MS. Follow-up phone interviews were conducted with 10 respondents who reported experiencing an MS-related relapse during the time they had experienced challenges accessing DMTs. RESULTS Among 507 survey completers, nearly half were either currently experiencing an issue related to DMT assess or had difficulty accessing a DMT in the past (233/507, 46.0%). The most frequently reported reasons for access difficulty were authorization requirements by insurance companies (past issues: 78/182, 42.9%; current issues: 9/42, 21%) and high out-of-pocket costs (past issues: 54/182, 29.7%; current issues: 13/42, 31%). About half (20/39, 51%) of participants with current access issues and over a third (68/165, 41.2%) of those with past issues went without their medication until they could access their prescribed DMT. Relapses were reported during periods of reduced DMT access for almost half (56/118, 47.5%) of those with past issues and nearly half (22/45, 49%) of those with current issues. Resolving access issues involved multiple stakeholder agents often coordinated in a patient-led effort. Among those who had resolved issues, about half (57/119, 47.9%) reported that doctors or office staff were involved, under half (48/119, 40.3%) were involved themselves, and about a third (39/119, 32.8%) reported the drug manufacturer was involved in resolving the issue. Follow-up interviews revealed that the financial burden associated with obtaining a prescribed DMT led to nonadherence. Additionally, participants felt that DMT treatment delays and stress associated with obtaining the DMT triggered relapses or worsened their MS. CONCLUSIONS This study expands current research by using a patient-centered, mixed-methods approach to describe barriers to MS treatment, the process to resolve barriers, and the perceived impact of treatment barriers on outcomes. Issues related to DMT access occur frequently, with individuals often serving as their own agents when navigating access difficulties to obtain their medication(s). Support for resolution of DMT access is needed to prevent undue stress and nonadherence.

scholarly journals Impact of COVID-19 on multiple sclerosis care and management: Results from the European Committee for Treatment and Research in Multiple Sclerosis survey

2021 ◽  
pp. 135245852110053
Author(s):  
Emilio Portaccio ◽  
Mattia Fonderico ◽  
Bernhard Hemmer ◽  
Tobias Derfuss ◽  
Bruno Stankoff ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Access To Care ◽  
Online Survey ◽  
Dimethyl Fumarate ◽  
Standards Of Care ◽  
Treatment Practices ◽  
European Committee ◽  
Disease Modifying Therapy ◽  
Anti Cd20 ◽  
The Impact

Background: The spread of Coronavirus disease-19 (COVID-19) poses unique challenges in the management of people with multiple sclerosis (PwMS). Objectives: To collect data about the impact of COVID-19 emergency on access to care for PwMS and on MS treatment practices. Methods: Between March and July 2020, the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) promoted an online survey covering patient access to care, management of relapses and visits, disease-modifying therapy (DMT) and experience with COVID-19. Results: Three-hundred and sixty neurologists from 52 countries (68% from Europe) completed the survey. 98% reported COVID-19-related restrictions. Telemedicine was adopted to overcome the limited access to care and was newly activated (73%) or widely implemented (17%). 70% reported changes in DMT management. Interferons and glatiramer were considered safe. Dimethyl fumarate, teriflunomide and fingolimod were considered safe except for patients developing lymphopenia. No modifications were considered for natalizumab in 64%, cladribine in 24%, anti-CD20 in 22% and alemtuzumab in 17%; 18% (for alemtuzumab and cladribine) and 43% (for anti-CD20) considered postponing treatment. Conclusion: The ECTRIMS survey highlighted the challenges in keeping standards of care in clinical practice. Telemedicine clearly needs to be implemented. Gathering data on DMT safety will remain crucial to inform treatment decisions.

scholarly journals Challenges in multiple sclerosis care: Results from an international mixed-methods study

2021 ◽  
Vol 50 ◽  
pp. 102854
Author(s):  
Sophie Péloquin ◽  
Klaus Schmierer ◽  
Thomas P. Leist ◽  
Jiwon Oh ◽  
Suzanne Murray ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Mixed Methods ◽  
Mixed Methods Study

scholarly journals Acute care nurses’ perceptions of leadership, teamwork, turnover intention and patient safety – a mixed methods study

BMC Nursing ◽  
2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Shahram Zaheer ◽  
Liane Ginsburg ◽  
Hannah J. Wong ◽  
Kelly Thomson ◽  
Lorna Bain ◽  
...  
Keyword(s):  
Patient Safety ◽  
Mixed Methods ◽  
Turnover Intention ◽  
Interactive Effect ◽  
Mixed Methods Study ◽  
Senior Leadership ◽  
Healthcare Organizations ◽  
Staff Perceptions ◽  
Leadership Support ◽  
The Impact

Abstract Background This study contributes to a small but growing body of literature on how context influences perceptions of patient safety in healthcare settings. We examine the impact of senior leadership support for safety, supervisory leadership support for safety, teamwork, and turnover intention on overall patient safety grade. Interaction effects of predictors on perceptions of patient safety are also examined. Methods In this mixed methods study, cross-sectional survey data (N = 185) were collected from nurses and non-physician healthcare professionals. Semi-structured interview data (N = 15) were collected from nurses. The study participants worked in intensive care, general medicine, mental health, or the emergency department of a large community hospital in Southern Ontario. Results Hierarchical regression analyses showed that staff perceptions of senior leadership (p < 0.001), teamwork (p < 0.01), and turnover intention (p < 0.01) were significantly associated with overall patient safety grade. The interactive effect of teamwork and turnover intention on overall patient safety grade was also found to be significant (p < 0.05). The qualitative findings corroborated the survey results but also helped expand the characteristics of the study’s key concepts (e.g., teamwork within and across professional boundaries) and why certain statistical relationships were found to be non-significant (e.g., nurse interviewees perceived the safety specific responsibilities of frontline supervisors much more broadly compared to the narrower conceptualization of the construct in the survey). Conclusions The results of the current study suggest that senior leadership, teamwork, and turnover intention significantly impact nursing staff perceptions of patient safety. Leadership is a modifiable contextual factor and resources should be dedicated to strengthen relational competencies of healthcare leaders. Healthcare organizations must also proactively foster inter and intra-professional collaboration by providing teamwork educational workshops or other on-site learning opportunities (e.g., simulation training). Healthcare organizations would benefit by considering the interactive effect of contextual factors as another lever for patient safety improvement, e.g., lowering staff turnover intentions would maximize the positive impact of teamwork improvement initiatives on patient safety.

scholarly journals Examining the effects of comorbidities on disease-modifying therapy use in multiple sclerosis

Neurology ◽  
2016 ◽  
Vol 86 (14) ◽  
pp. 1287-1295 ◽  
Author(s):  
Tingting Zhang ◽  
Helen Tremlett ◽  
Stella Leung ◽  
Feng Zhu ◽  
Elaine Kingwell ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Disease Modifying Therapy ◽  
Disease Modifying
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