Assessing understanding of individual risk and symptoms of progressive multifocal leukoencephalopathy in patients prescribed natalizumab for multiple sclerosis

Rath, Louise; Vijiaratnam, Nirosen; Skibina, Olga

doi:10.1111/imj.13318

Cited by 8 publications

(3 citation statements)

References 19 publications

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“…Although a higher proportion of PAC recipients identified PML as a potential risk of rituximab than nonrecipients, overall, patients had poor knowledge of PML, showing that the PAC may only contribute to patient knowledge to a limited extent. These results were consistent with those of a previous study evaluating the effectiveness of a PAC in educating patients receiving natalizumab on the risk of PML, which showed that only 16/37 patients (43.2%) who received the PAC answered all PML basic knowledge questions correctly 15. Reaching more patients with the PAC information andimproving knowledge retention are important goals for HCPs, patients, regulators, and MAHs.…”

supporting

confidence: 91%

Rituximab utilization for approved and off‐label nononcology indications and patients’ experiences with the Patient Alert Card

Sarsour¹,

Beckley-Kartey

Melega

et al. 2020

Pharmacology Res & Perspec

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This study used retrospective chart review and survey data to evaluate: (1) off‐label use of rituximab (MabThera®/Rituxan®) in autoimmune conditions and (2) patients’ receipt and knowledge of the Patient Alert Card (PAC), a risk minimization measure for progressive multifocal leukoencephalopathy (PML) and serious infections. Anonymized patient data were collected from infusion centers in Europe from December 2015 to July 2017. Adults receiving rituximab in the same centers were provided a self‐administered survey. Outcomes included patterns of off‐label rituximab use for nononcology indications, and evaluation of patients’ receipt and knowledge of the PAC and its impact. Of 1012 patients in the retrospective chart review, 70.2% received rituximab for rheumatoid arthritis or granulomatosis with polyangiitis/microscopic polyangiitis, and 29.8% received rituximab off label. Among 524 survey participants, 32.8% reported receiving the PAC, 59.3% reported not receiving the PAC and 7.9% did not know whether they received the PAC. A total of 72.4% of patients reported that they were unaware that some patients receiving rituximab experience PML. A higher proportion of PAC recipients identified PML as a potential risk of rituximab than nonrecipients (37.8% vs 19.9%); 58.3% of PAC recipients had poor awareness of PML. Most PAC recipients (90.0%) and nonrecipients (85.5%) correctly answered that they should seek medical attention for infection symptoms. In conclusion, approximately 30% of patients received off‐label rituximab. Most patients reported not receiving the PAC or having knowledge of PML but demonstrated understanding of the recommended action in the event of infection symptoms, regardless of PAC receipt.

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supporting

confidence: 91%

Rituximab utilization for approved and off‐label nononcology indications and patients’ experiences with the Patient Alert Card

Sarsour¹,

Beckley-Kartey

Melega

et al. 2020

Pharmacology Res & Perspec

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“…Four studies [54][55][56][57] reported on information provided via social media. Della Rosa et al 54 investigated the information available on the social network sites.…”

Section: Shared Decision Making In Msmentioning

confidence: 99%

“I Will Respect the Autonomy of My Patient”

Rahn

Solari

Beckerman

et al. 2020

International Journal of MS Care

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CME/CNE Information Activity Available Online: To access the article, post-test, and evaluation online, go to http://www.cmscscholar.org. Target Audience: The target audience for this activity is physicians, physician assistants, nursing professionals, and other health care providers involved in the management of patients with multiple sclerosis (MS). Learning Objectives: 1) Identify the extent, range, and nature of the recent evidence on shared decision making and patient autonomy in MS. 2) Examine the limitations of the current available evidence and resulting research/knowledge gaps. Accreditation Statement: In support of improving patient care, this activity has been planned and implemented by the Consortium of Multiple Sclerosis Centers (CMSC) and Delaware Media Group. The CMSC is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team. Physician Credit: The CMSC designates this journal-based activity for a maximum of 1.0 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity. Nurse Credit: The CMSC designates this enduring material for 1.0 contact hour (none in the area of pharmacology). Disclosures: Francois Bethoux, MD, Editor in Chief of the International Journal of MS Care (IJMSC), has served as Physician Planner for this activity. He has disclosed relationships with Springer Publishing (royalty), Qr8 (receipt of intellectual property rights/patent holder), Biogen (receipt of intellectual property rights/patent holder, speakers’ bureau), GW Pharma (consulting fee), MedRhythms (consulting fee, contracted research), Genentech (consulting fee), Helius (consulting fee), and Adamas Pharmaceuticals (contracted research). Laurie Scudder, DNP, NP, has served as Reviewer for this activity. She has disclosed no relevant financial relationships. Anne Christin Rahn, PhD, has disclosed no relevant financial relationships. Alessandra Solari, MD, has disclosed relationships with Biogen, Merck Serono, Novartis, Almirall, and Excemed (personal fees for speaker honoraria). Heleen Beckerman, PhD, has disclosed no relevant financial relationships. Richard Nicholas, PhD, has disclosed relationships with Biogen, Roche, and Novartis (consulting fee) and Novartis, Biogen, Roche, and Sanofi (principal investigator on MS trials). David Wilkie, PhD, has disclosed no relevant financial relationships. Christoph Heesen, MD, has disclosed no relevant financial relationships. Andrea Giordano, MSc, has disclosed no relevant financial relationships. The peer reviewer for IJMSC has disclosed relationships with Biogen, Novartis, Roche, and Sanofi Genzyme (consulting fee, speakers’ bureau, contracted research); EMD Serono (consulting fee, speakers’ bureau); and Alexion and Teva Neuroscience (consulting fee). The staff at IJMSC, CMSC, and Delaware Media Group who are in a position to influence content have disclosed no relevant financial relationships. Note: Financial relationships may have changed in the interval between listing these disclosures and publication of the article. Method of Participation: Release Date: December 1, 2020 Valid for Credit Through: December 1, 2021 In order to receive CME/CNE credit, participants must: 1) Review the continuing education information, including learning objectives and author disclosures.2) Study the educational content.3) Complete the post-test and evaluation, which are available at http://www.cmscscholar.org Statements of Credit are awarded upon successful completion of the evaluation and the post-test with a passing score of >70%. The post-test may be retaken if necessary. There is no fee to participate in this activity. Disclosure of Unlabeled Use: This educational activity may contain discussion of published and/or investigational uses of agents that are not approved by the FDA. The CMSC and Delaware Media Group do not recommend the use of any agent outside of the labeled indications. The opinions expressed in the educational activity are those of the faculty and do not necessarily represent the views of the CMSC or Delaware Media Group. Disclaimer: Participants have an implied responsibility to use the newly acquired information to enhance patient outcomes and their own professional development. The information presented in this activity is not meant to serve as a guideline for patient management. Any medications, diagnostic procedures, or treatments discussed in this publication should not be used by clinicians or other health care professionals without first evaluating their patients’ conditions, considering possible contraindications or risks, reviewing any applicable manufacturer’s product information, and comparing any therapeutic approach with the recommendations of other authorities.

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“…We also recently found that the utility of mandated tools in the initiation of other MS therapy is lacking and does not always result in the degree of comprehension of possible fatal complications that is desired in patients by HCPs. 12 Support bodies also increasingly promote this growing trend of online use. MS Australia encourages online education as a means to connect and support patients with MS, allowing the giving and receiving of practical and emotional assistance.…”

Section: Cme/cne Article • 2017 Series • Numbermentioning

confidence: 99%

Alemtuzumab in Multiple Sclerosis: Lessons from Social Media in Enhancing Patient Care

Rath¹,

Vijiaratnam²,

Skibina³

2017

International Journal of MS Care

Self Cite

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CME/CNE Information Activity Available Online: To access the article, post-test, and evaluation online, go to http://www.cmscscholar.org. Target Audience: The target audience for this activity is physicians, physician assistants, nursing professionals, and other health-care providers involved in the management of patients with multiple sclerosis (MS). Learning Objectives: Accreditation Statement: This activity has been planned and implemented in accordance with the accreditation requirements and policies of the Accreditation Council for Continuing Medical Education (ACCME) through the joint providership of the Consortium of Multiple Sclerosis Centers (CMSC), Nurse Practitioner Alternatives (NPA), and Delaware Media Group. The CMSC is accredited by the ACCME to provide continuing medical education for physicians. The CMSC designates this journal-based CME activity for a maximum of 1.0 AMA PRA Category 1 Credit(s)™. Physicians should claim only the credit commensurate with the extent of their participation in the activity. Nurse Practitioner Alternatives (NPA) is accredited as a provider of continuing nursing education by the American Nurses Credentialing Center's Commission on Accreditation. NPA designates this enduring material for 1.0 Continuing Nursing Education credit (1.0 in the area of pharmacology). Laurie Scudder, DNP, NP, has served as Nurse Planner and reviewer for this activity. She has disclosed no relevant financial relationships. Disclosures: Editor in Chief of the International Journal of MS Care (IJMSC), has served as Physician Planner for this activity. He has received royalties from Springer Publishing, received intellectual property rights/patent holder from Biogen, and has performed contracted research for Biogen.Francois Bethoux, MD, has served as Nurse Planner and reviewer for this activity. She has disclosed no relevant financial relationships.Laurie Scudder, DNP, NP, has received a travel grant from Genzyme.Louise Rath, MA (Bioethics), Grad Dip Crit Care, BA, RN, , has disclosed no relevant financial relationships.Nirosen Vijiaratnam, MBBS, BMedSci , has served on a speakers' bureau for and received a travel grant from Genzyme.Olga Skibina, MD, FRACP The anonymous peer reviewers for the IJMSC have disclosed no relevant financial relationships. The staff at the IJMSC, CMSC, NPA, and Delaware Media Group who are in a position to influence content have disclosed no relevant financial relationships. Note: Disclosures listed for authors are those applicable at the time of their work on this project and within 12 months previously. Financial relationships for some authors may have changed in the interval between the time of their work on this project and publication of the article and/or the authors may list other older disclosures at the end of the article. Method of Participation: Release Date: December 1, 2017 Valid for Credit Through: December 1, 2018 In order to receive CME/CNE credit, participants must: Statements of Credit are awarded upon successful completion of the post-test with a passing score of >70% and the evaluation. There is no fee to participate in this activity. Disclosure of Unlabeled Use: This CME/CNE activity may contain discussion of published and/or investigational uses of agents that are not approved by the FDA. CMSC, NPA, and Delaware Media Group do not recommend the use of any agent outside of the labeled indications. The opinions expressed in the educational activity are those of the faculty and do not necessarily represent the views of CMSC, NPA, or Delaware Media Group. Disclaimer: Participants have an implied responsibility to use the newly acquired information to enhance patient outcomes and their own professional development. The information presented in this activity is not meant to serve as a guideline for patient management. Any medications, diagnostic procedures, or treatments discussed in this publication should not be used by clinicians or other health-care professionals without first evaluating their patients' conditions, considering possible contraindications or risks, reviewing any applicable manufacturer's product information, and comparing any therapeutic approach with the recommendations of other authorities.

show abstract

Assessing understanding of individual risk and symptoms of progressive multifocal leukoencephalopathy in patients prescribed natalizumab for multiple sclerosis

Cited by 8 publications

References 19 publications

Rituximab utilization for approved and off‐label nononcology indications and patients’ experiences with the Patient Alert Card

Rituximab utilization for approved and off‐label nononcology indications and patients’ experiences with the Patient Alert Card

“I Will Respect the Autonomy of My Patient”

Alemtuzumab in Multiple Sclerosis: Lessons from Social Media in Enhancing Patient Care

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