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1.
Mult Scler ; : 13524585241265961, 2024 Jul 31.
Article in English | MEDLINE | ID: mdl-39082639

ABSTRACT

INTRODUCTION: Multiple sclerosis (MS) is an immune-mediated central nervous system disorder and a growing global health challenge affecting nearly 3 million people worldwide. Incidence and prevalence continue to increase with no known cause or cure. Globally governments and non-profit organizations fund research toward better understanding of and treatments for multiple sclerosis. METHODS: This study identified MS research projects funded between 2021 and 2023 by government and non-profit organization sources. Projects were described by type of scientific approach, Pathways to Cure research category (i.e. Stop, Restore, End), and other key characteristics. RESULTS: Over 2,300 MS research projects were identified through 16 non-profit MS organizations and 18 government databases. The overall global portfolio of these projects is valued at nearly one and a half billion Euros. The majority of projects were classified in the Stop category (60%). Research collaboration occurs in many forms among the research community; around 272 projects were reported to be co-funded. CONCLUSION: Global MS research collaboration will accelerate progress toward increased knowledge, effective treatments, improved health outcomes, and ultimately cures for MS. This landscape analysis highlights the current distribution of MS research investment between topics and begins to suggest where the MS community should focus to increase potential impact for current and future endeavors.

3.
Article in English | MEDLINE | ID: mdl-36038263

ABSTRACT

BACKGROUND AND OBJECTIVES: Certain demographic and clinical characteristics, including the use of some disease-modifying therapies (DMTs), are associated with severe acute respiratory syndrome coronavirus 2 infection severity in people with multiple sclerosis (MS). Comprehensive exploration of these relationships in large international samples is needed. METHODS: Clinician-reported demographic/clinical data from 27 countries were aggregated into a data set of 5,648 patients with suspected/confirmed coronavirus disease 2019 (COVID-19). COVID-19 severity outcomes (hospitalization, admission to intensive care unit [ICU], requiring artificial ventilation, and death) were assessed using multilevel mixed-effects ordered probit and logistic regression, adjusted for age, sex, disability, and MS phenotype. DMTs were individually compared with glatiramer acetate, and anti-CD20 DMTs with pooled other DMTs and with natalizumab. RESULTS: Of 5,648 patients, 922 (16.6%) with suspected and 4,646 (83.4%) with confirmed COVID-19 were included. Male sex, older age, progressive MS, and higher disability were associated with more severe COVID-19. Compared with glatiramer acetate, ocrelizumab and rituximab were associated with higher probabilities of hospitalization (4% [95% CI 1-7] and 7% [95% CI 4-11]), ICU/artificial ventilation (2% [95% CI 0-4] and 4% [95% CI 2-6]), and death (1% [95% CI 0-2] and 2% [95% CI 1-4]) (predicted marginal effects). Untreated patients had 5% (95% CI 2-8), 3% (95% CI 1-5), and 1% (95% CI 0-3) higher probabilities of the 3 respective levels of COVID-19 severity than glatiramer acetate. Compared with pooled other DMTs and with natalizumab, the associations of ocrelizumab and rituximab with COVID-19 severity were also more pronounced. All associations persisted/enhanced on restriction to confirmed COVID-19. DISCUSSION: Analyzing the largest international real-world data set of people with MS with suspected/confirmed COVID-19 confirms that the use of anti-CD20 medication (both ocrelizumab and rituximab), as well as male sex, older age, progressive MS, and higher disability are associated with more severe course of COVID-19.


Subject(s)
COVID-19 , Multiple Sclerosis, Chronic Progressive , Multiple Sclerosis , Antigens, CD20 , Glatiramer Acetate/therapeutic use , Humans , Immunosuppressive Agents/therapeutic use , Information Dissemination , Male , Multiple Sclerosis/drug therapy , Multiple Sclerosis/epidemiology , Multiple Sclerosis, Chronic Progressive/drug therapy , Natalizumab/therapeutic use , Risk Factors , Rituximab/therapeutic use
4.
Mult Scler Relat Disord ; 66: 104072, 2022 Oct.
Article in English | MEDLINE | ID: mdl-35917745

ABSTRACT

BACKGROUND: Interferon-ß, a disease-modifying therapy (DMT) for MS, may be associated with less severe COVID-19 in people with MS. RESULTS: Among 5,568 patients (83.4% confirmed COVID-19), interferon-treated patients had lower risk of severe COVID-19 compared to untreated, but not to glatiramer-acetate, dimethyl-fumarate, or pooled other DMTs. CONCLUSIONS: In comparison to other DMTs, we did not find evidence of protective effects of interferon-ß on the severity of COVID-19, though compared to the untreated, the course of COVID19 was milder among those on interferon-ß. This study does not support the use of interferon-ß as a treatment to reduce COVID-19 severity in MS.


Subject(s)
COVID-19 , Multiple Sclerosis, Relapsing-Remitting , Multiple Sclerosis , Acetates , Dimethyl Fumarate/therapeutic use , Glatiramer Acetate/therapeutic use , Humans , Immunosuppressive Agents/adverse effects , Interferon-beta/therapeutic use , Multiple Sclerosis/chemically induced , Multiple Sclerosis/complications , Multiple Sclerosis/drug therapy , Multiple Sclerosis, Relapsing-Remitting/chemically induced
5.
Mult Scler Relat Disord ; 65: 104028, 2022 Sep.
Article in English | MEDLINE | ID: mdl-35839562

ABSTRACT

Women with multiple sclerosis (MS) are often of childbearing age. Thirty-six women with MS who were pregnant (n = 27) or within 6 weeks postpartum (n = 9) were reported in the North American COViMS registry and their COVID-19 outcomes were described. One pregnant and one postpartum woman were hospitalized. No deaths occurred. To compare COVID-19 clinical outcomes in pregnant and postpartum females with females who were not pregnant or postpartum, a 1:2 propensity score match was performed. While not powered to detect small differences, it was reassuring that no increased risks for those with MS who were pregnant/postpartum were revealed.


Subject(s)
COVID-19 , Multiple Sclerosis , Female , Hospitalization , Humans , Multiple Sclerosis/complications , Multiple Sclerosis/epidemiology , Postpartum Period , Pregnancy , Registries
6.
Nat Rev Neurol ; 18(9): 559-572, 2022 09.
Article in English | MEDLINE | ID: mdl-35840705

ABSTRACT

A prodrome is an early set of signs or symptoms that indicate the onset of a disease before more typical symptoms develop. Prodromal stages are well recognized in some neurological and immune-mediated diseases such as Parkinson disease, schizophrenia, type 1 diabetes mellitus and rheumatoid arthritis. Emerging evidence indicates that a prodromal stage exists in multiple sclerosis (MS), raising the possibility of intervention at this stage to delay or prevent the development of classical MS. However, much remains unclear about the prodromal stage of MS and considerable research is needed to fully characterize the prodrome and develop standardized criteria to reliably identify individuals with prodromal MS who are at high risk of progressing to a diagnosis of MS. In this Roadmap, we draw on work in other diseases to propose a disease framework for MS that incorporates the prodromal stage, and set out key steps and considerations needed in future research to fully characterize the MS prodrome, identify early disease markers and develop standardized criteria that will enable reliable identification of individuals with prodromal MS, thereby facilitating trials of interventions to slow or stop progression beyond the prodrome.


Subject(s)
Multiple Sclerosis , Schizophrenia , Humans , Multiple Sclerosis/diagnosis , Multiple Sclerosis/prevention & control , Prodromal Symptoms , Schizophrenia/diagnosis , Schizophrenia/prevention & control
7.
Neurology ; 98(18): e1810-e1817, 2022 05 03.
Article in English | MEDLINE | ID: mdl-35418457

ABSTRACT

BACKGROUND AND OBJECTIVES: A recent report estimated that approximately 1 million adults were living with multiple sclerosis (MS) in the United States. Although MS is rarely the direct cause of death, its debilitating effects on normal body functions can result in considerable disruption to daily living and life roles including work, physical independence, mobility, social interaction, and participation in leisure activities. This study estimated the total economic burden of MS in the United States in 2019. METHODS: This study used a prevalence-based approach to estimate the national economic burden of MS. Claims from 3 sources (Medicare Current Beneficiary Survey, Medicare Standard Analytical File, and Optum de-identified Normative Health Information System) were used to obtain direct costs and a survey was developed to collect indirect costs (e.g., labor market productivity losses, costs of paid and unpaid caregivers, home modification) from 946 patients with MS (PwMS). Direct medical costs reflected the difference in the total average annual amount paid for PwMS vs matched controls without MS. Future earnings loss due to premature death attributable to MS was calculated using Centers for Disease Control and Prevention mortality data and Medicare claims data. RESULTS: The estimated total economic burden was $85.4 billion, with a direct medical cost of $63.3 billion and indirect and nonmedical costs of $22.1 billion. Retail prescription medication (54%); clinic-administered drugs, medication, and administration (12%); and outpatient care (9%) were the 3 largest components of the direct costs. The average excess per-person annual medical costs for PwMS was $65,612; at $35,154 per person, disease-modifying therapies (DMTs) accounted for the largest proportion of this cost. The cost per DMT user ranged from $57,202 to $92,719, depending on sex-age strata. The average indirect and nonmedical costs were $18,542 per PwMS and $22,875 per PwMS if caregivers' costs were included. Lost earnings due to premature death, presenteeism, and absenteeism losses were the largest indirect cost components. DISCUSSION: MS is a costly chronic disease, with direct costs of prescription drugs and indirect productivity loss being important cost drivers. Our findings suggested that the burden of MS in the United States has been underestimated.


Subject(s)
Financial Stress , Multiple Sclerosis , Adult , Aged , Cost of Illness , Health Care Costs , Humans , Medicare , Multiple Sclerosis/epidemiology , Multiple Sclerosis/therapy , United States/epidemiology
8.
Mult Scler ; 28(3): 331-345, 2022 Mar.
Article in English | MEDLINE | ID: mdl-35236198

ABSTRACT

BACKGROUND: Multiple Sclerosis (MS) is a growing global health challenge affecting nearly 3 million people. Progress has been made in the understanding and treatment of MS over the last several decades, but cures remain elusive. The National MS Society is focused on achieving cures for MS. OBJECTIVES: Cures for MS will be hastened by having a roadmap that describes knowledge gaps, milestones, and research priorities. In this report, we share the Pathways to Cures Research Roadmap and recommendations for strategies to accelerate the development of MS cures. METHODS: The Roadmap was developed through engagement of scientific thought leaders and people affected by MS from North America and the United Kingdom. It also included the perspectives of over 300 people living with MS and was endorsed by many leading MS organizations. RESULTS: The Roadmap consist of three distinct but overlapping cure pathways: (1) stopping the MS disease process, (2) restoring lost function by reversing damage and symptoms, and (3) ending MS through prevention. Better alignment and focus of global resources on high priority research questions are also recommended. CONCLUSIONS: We hope the Roadmap will inspire greater collaboration and alignment of global resources that accelerate scientific breakthroughs leading to cures for MS.


Subject(s)
Multiple Sclerosis , Humans , Multiple Sclerosis/therapy , North America , United Kingdom
9.
Article in English | MEDLINE | ID: mdl-34753828

ABSTRACT

BACKGROUND AND OBJECTIVES: There are limited data on severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) vaccine reactogenicity in persons with multiple sclerosis (PwMS) and how reactogenicity is affected by disease-modifying therapies (DMTs). The objective of this retrospective cross-sectional study was to generate real-world multiple sclerosis-specific vaccine safety information, particularly in the context of specific DMTs, and provide information to mitigate specific concerns in vaccine hesitant PwMS. METHODS: Between 3/2021 and 6/2021, participants in iConquerMS, an online people-powered research network, reported SARS-CoV-2 vaccines, experiences of local (itch, pain, redness, swelling, or warmth at injection site) and systemic (fever, chills, fatigue, headache, joint pain, malaise, muscle ache, nausea, allergic, and other) reactions within 24 hours (none, mild, moderate, and severe), DMT use, and other attributes. Multivariable models characterized associations between clinical factors and reactogenicity. RESULTS: In 719 PwMS, 64% reported experiencing a reaction after their first vaccination shot, and 17% reported a severe reaction. The most common reactions were pain at injection site (54%), fatigue (34%), headache (28%), and malaise (21%). Younger age, being female, prior SARS-CoV-2 infection, and receiving the ChAdOx1 nCoV-19 (Oxford-AstraZeneca) vs BNT162b2 (Pfizer-BioNTech) vaccine were associated with experiencing a reaction after the first vaccine dose. Similar relationships were observed for a severe reaction, including higher odds of reactions among PwMS with more physical impairment and lower odds of reactions for PwMS on an alpha4-integrin blocker or sphingosine-1-phosphate receptor modulator. In 442 PwMS who received their second vaccination shot, 74% reported experiencing a reaction, whereas 22% reported a severe reaction. Reaction profiles after the second shot were similar to those reported after the first shot. Younger PwMS and those who received the mRNA-1273 (Moderna) vs BNT162b2 vaccine reported higher reactogenicity after the second shot, whereas those on a sphingosine-1-phosphate receptor modulator or fumarate were significantly less likely to report a reaction. DISCUSSION: SARS-CoV-2 vaccine reactogenicity profiles and the associated factors in this convenience sample of PwMS appear similar to those reported in the general population. PwMS on specific DMTs were less likely to report vaccine reactions. Overall, the short-term vaccine reactions experienced in the study population were mostly self-limiting, including pain at the injection site, fatigue, headache, and fever.


Subject(s)
COVID-19 Vaccines/adverse effects , COVID-19 Vaccines/immunology , COVID-19/complications , COVID-19/immunology , Immunogenicity, Vaccine/immunology , Multiple Sclerosis/complications , Multiple Sclerosis/immunology , Adult , Aged , COVID-19/prevention & control , COVID-19/virology , Cross-Sectional Studies , Female , Humans , Immunization, Secondary/adverse effects , Internet , Male , Middle Aged , Multiple Sclerosis/virology , Retrospective Studies , SARS-CoV-2/immunology , SARS-CoV-2/pathogenicity , Surveys and Questionnaires , Vaccination/adverse effects , Vaccination/statistics & numerical data
10.
Article in English | MEDLINE | ID: mdl-34429342

ABSTRACT

BACKGROUND AND OBJECTIVE: To describe the impact of coronavirus disease 2019 (COVID-19) on people with neuromyelitis optica spectrum disorders (NMOSD) and myelin oligodendrocyte glycoprotein antibody disease (MOGAD). METHODS: The COVID-19 Infections in Multiple Sclerosis (MS) and Related Diseases (COViMS) Registry collected data on North American patients with MS and related diseases with laboratory-positive or highly suspected SARS-CoV-2 infection. Deidentified data were entered into a web-based registry by health care providers. Data were analyzed using t-tests, Pearson χ2 tests, or Fisher exact tests for categorical variables. Univariate logistic regression models examined effects of risk factors and COVID-19 clinical severity. RESULTS: As of June 7, 2021, 77 patients with NMOSD and 20 patients with MOGAD were reported in the COViMS Registry. Most patients with NMOSD were laboratory positive for SARS-CoV-2 and taking rituximab at the time of COVID-19 diagnosis. Most patients with NMOSD were not hospitalized (64.9% [95% CI: 53.2%-75.5%]), whereas 15.6% (95% CI: 8.3%-25.6%) were hospitalized only, 9.1% (95% CI: 3.7%-17.8%) were admitted to the ICU and/or ventilated, and 10.4% (95% CI: 4.6%-19.5%) died. In patients with NMOSD, having a comorbidity was the sole factor identified for poorer COVID-19 outcome (OR = 6.0, 95% CI: 1.79-19.98). Most patients with MOGAD were laboratory positive for SARS-CoV-2, and almost half were taking rituximab. Among patients with MOGAD, 75.0% were not hospitalized, and no deaths were recorded; no factors were different between those not hospitalized and those hospitalized, admitted to the ICU, or ventilated. DISCUSSION: Among the reported patients with NMOSD, a high mortality rate was observed, and the presence of comorbid conditions was associated with worse COVID-19 outcome. There were no deaths reported in the patients with MOGAD, although these observations are limited due to small sample size.


Subject(s)
Autoimmune Diseases of the Nervous System/mortality , COVID-19/mortality , COVID-19/therapy , Myelin-Oligodendrocyte Glycoprotein/immunology , Neuromyelitis Optica/mortality , Registries , Adult , Aged , Autoimmune Diseases of the Nervous System/immunology , COVID-19/diagnosis , Comorbidity , Female , Hospitalization , Humans , Immunologic Factors/administration & dosage , Intensive Care Units , Male , Middle Aged , Neuromyelitis Optica/drug therapy , North America/epidemiology , Outcome Assessment, Health Care , Respiration, Artificial , Rituximab/administration & dosage
11.
JAMA Neurol ; 78(6): 699-708, 2021 06 01.
Article in English | MEDLINE | ID: mdl-33739362

ABSTRACT

Importance: Emergence of SARS-CoV-2 causing COVID-19 prompted the need to gather information on clinical outcomes and risk factors associated with morbidity and mortality in patients with multiple sclerosis (MS) and concomitant SARS-CoV-2 infections. Objective: To examine outcomes and risk factors associated with COVID-19 clinical severity in a large, diverse cohort of North American patients with MS. Design, Setting, and Participants: This analysis used deidentified, cross-sectional data on patients with MS and SARS-CoV-2 infection reported by health care professionals in North American academic and community practices between April 1, 2020, and December 12, 2020, in the COVID-19 Infections in MS Registry. Health care professionals were asked to report patients after a minimum of 7 days from initial symptom onset and after sufficient time had passed to observe the COVID-19 disease course through resolution of acute illness or death. Data collection began April 1, 2020, and is ongoing. Exposures: Laboratory-positive SARS-CoV-2 infection or highly suspected COVID-19. Main Outcomes and Measures: Clinical outcome with 4 levels of increasing severity: not hospitalized, hospitalization only, admission to the intensive care unit and/or required ventilator support, and death. Results: Of 1626 patients, most had laboratory-positive SARS-CoV-2 infection (1345 [82.7%]), were female (1202 [74.0%]), and had relapsing-remitting MS (1255 [80.4%]). A total of 996 patients (61.5%) were non-Hispanic White, 337 (20.8%) were Black, and 190 (11.7%) were Hispanic/Latinx. The mean (SD) age was 47.7 (13.2) years, and 797 (49.5%) had 1 or more comorbidity. The overall mortality rate was 3.3% (95% CI, 2.5%-4.3%). Ambulatory disability and older age were each independently associated with increased odds of all clinical severity levels compared with those not hospitalized after adjusting for other risk factors (nonambulatory: hospitalization only, odds ratio [OR], 2.8 [95% CI, 1.6-4.8]; intensive care unit/required ventilator support, OR, 3.5 [95% CI, 1.6-7.8]; death, OR, 25.4 [95% CI, 9.3-69.1]; age [every 10 years]: hospitalization only, OR, 1.3 [95% CI, 1.1-1.6]; intensive care unit/required ventilator support, OR, 1.3 [95% CI, 0.99-1.7]; death, OR, 1.8 [95% CI, 1.2-2.6]). Conclusions and Relevance: In this registry-based cross-sectional study, increased disability was independently associated with worse clinical severity including death from COVID-19. Other risk factors for worse outcomes included older age, Black race, cardiovascular comorbidities, and recent treatment with corticosteroids. Knowledge of these risk factors may improve the treatment of patients with MS and COVID-19 by helping clinicians identify patients requiring more intense monitoring or COVID-19 treatment.


Subject(s)
COVID-19/complications , Multiple Sclerosis/complications , Adult , Age Factors , Aged , COVID-19/mortality , COVID-19/therapy , Child , Cohort Studies , Cross-Sectional Studies , Ethnicity , Female , Humans , Male , Middle Aged , Multiple Sclerosis/mortality , Multiple Sclerosis/therapy , Registries , Risk Factors , Sex Factors , Treatment Outcome , United States/epidemiology
12.
Mult Scler ; 26(10): 1157-1162, 2020 09.
Article in English | MEDLINE | ID: mdl-32662757

ABSTRACT

BACKGROUND: We need high-quality data to assess the determinants for COVID-19 severity in people with MS (PwMS). Several studies have recently emerged but there is great benefit in aligning data collection efforts at a global scale. OBJECTIVES: Our mission is to scale-up COVID-19 data collection efforts and provide the MS community with data-driven insights as soon as possible. METHODS: Numerous stakeholders were brought together. Small dedicated interdisciplinary task forces were created to speed-up the formulation of the study design and work plan. First step was to agree upon a COVID-19 MS core data set. Second, we worked on providing a user-friendly and rapid pipeline to share COVID-19 data at a global scale. RESULTS: The COVID-19 MS core data set was agreed within 48 hours. To date, 23 data collection partners are involved and the first data imports have been performed successfully. Data processing and analysis is an on-going process. CONCLUSIONS: We reached a consensus on a core data set and established data sharing processes with multiple partners to address an urgent need for information to guide clinical practice. First results show that partners are motivated to share data to attain the ultimate joint goal: better understand the effect of COVID-19 in PwMS.


Subject(s)
Coronavirus Infections/physiopathology , Multiple Sclerosis/therapy , Pneumonia, Viral/physiopathology , Registries , Betacoronavirus , COVID-19 , Coronavirus Infections/complications , Coronavirus Infections/therapy , Data Collection , Humans , Information Dissemination , International Cooperation , Multiple Sclerosis/complications , Pandemics , Pneumonia, Viral/complications , Pneumonia, Viral/therapy , Risk Factors , SARS-CoV-2 , Treatment Outcome
13.
Mult Scler ; 25(14): 1826-1827, 2019 12.
Article in English | MEDLINE | ID: mdl-31687880
14.
Mult Scler ; 24(5): 579-586, 2018 04.
Article in English | MEDLINE | ID: mdl-28279128

ABSTRACT

BACKGROUND: There is a growing number of cohorts and registries collecting phenotypic and genotypic data from groups of multiple sclerosis patients. Improved awareness and better coordination of these efforts is needed. OBJECTIVE: The purpose of this report is to provide a global landscape of the major longitudinal MS patient data collection efforts and share recommendations for increasing their impact. METHODS: A workshop that included over 50 MS research and clinical experts from both academia and industry was convened to evaluate how current and future MS cohorts could be better used to provide answers to urgent questions about progressive MS. RESULTS: The landscape analysis revealed a significant number of largely uncoordinated parallel studies. Strategic oversight and direction is needed to streamline and leverage existing and future efforts. A number of recommendations for enhancing these efforts were developed. CONCLUSIONS: Better coordination, increased leverage of evolving technology, cohort designs that focus on the most important unanswered questions, improved access, and more sustained funding will be needed to close the gaps in our understanding of progressive MS and accelerate the development of effective therapies.


Subject(s)
Guidelines as Topic , Multiple Sclerosis/epidemiology , Multiple Sclerosis/therapy , Registries/standards , Capital Financing , Cohort Studies , Consensus Development Conferences as Topic , Disease Progression , Electronic Health Records , Genotype , Humans , Immunomodulation , Multiple Sclerosis/economics , Multiple Sclerosis/genetics , Phenotype , Prevalence , Research , Treatment Outcome
15.
Neurology ; 83(3): 278-86, 2014 Jul 15.
Article in English | MEDLINE | ID: mdl-24871874

ABSTRACT

Accurate clinical course descriptions (phenotypes) of multiple sclerosis (MS) are important for communication, prognostication, design and recruitment of clinical trials, and treatment decision-making. Standardized descriptions published in 1996 based on a survey of international MS experts provided purely clinical phenotypes based on data and consensus at that time, but imaging and biological correlates were lacking. Increased understanding of MS and its pathology, coupled with general concern that the original descriptors may not adequately reflect more recently identified clinical aspects of the disease, prompted a re-examination of MS disease phenotypes by the International Advisory Committee on Clinical Trials of MS. While imaging and biological markers that might provide objective criteria for separating clinical phenotypes are lacking, we propose refined descriptors that include consideration of disease activity (based on clinical relapse rate and imaging findings) and disease progression. Strategies for future research to better define phenotypes are also outlined.


Subject(s)
Clinical Trials as Topic/standards , Multiple Sclerosis/classification , Societies, Medical/standards , Consensus , Humans , Multiple Sclerosis/physiopathology , Multiple Sclerosis/therapy
16.
JAMA Dermatol ; 149(6): 717-21, 2013 Jun.
Article in English | MEDLINE | ID: mdl-23783152

ABSTRACT

IMPORTANCE: This article represents a real-world perspective on access to health care including the number and types of physicians seen by patients with psoriasis. It is important for practicing dermatologists to recognize patients who may be less likely to seek care for this multifaceted systemic disease as well as to be aware of reasons for not seeing physicians. OBJECTIVES: To examine the relationship between psoriasis patient characteristics and access to health care and to determine out-of-pocket costs for psoriasis care. DESIGN: Cross-sectional survey. SETTING: Patients with psoriasis and psoriatic arthritis in the general community in the United States. PARTICIPANTS: A random sample of patients with psoriasis and psoriatic arthritis from more than 75,000 National Psoriasis Foundation members. MAIN OUTCOMES AND MEASURES: Number and type of physicians seen in the past 2 years and out-of-pocket health care expenses were measured. RESULTS: Among 5604 patients with psoriasis and psoriatic arthritis, 92.4% had seen at least 1 physician in 2 years. Compared with males, female patients with psoriasis were 1.47 times more likely to seek care (adjusted odds ratio, 1.47; 95% CI, 1.18-1.83). Patients with private insurance and Medicare were more likely to seek care compared with uninsured patients (adjusted odds ratio, 3.02; 95% CI, 2.23-4.08 and 2.85; 1.91-4.24, respectively). Among patients with psoriasis seeking care, 78.3% were seeing specialists; 22% obtained care from primary care physicians. Primary reasons for not seeking treatments included giving up on disease treatment (27.6%) and prohibitive cost (21%). Compared with patients with mild disease, patients with severe psoriasis were more likely to seek a specialist for care (adjusted odds ratio, 1.64; 95% CI, 1.37-1.98). Patients spent an average of $2528 out-of-pocket per year for psoriasis care. CONCLUSIONS AND RELEVANCE: About one-quarter of patients seek psoriasis care from primary care physicians, and insurance status affects care-seeking patterns. Giving up on treatment and prohibitive costs remain primary reasons for not seeking care.


Subject(s)
Arthritis, Psoriatic/therapy , Financing, Personal/statistics & numerical data , Health Care Costs/statistics & numerical data , Health Services Accessibility/statistics & numerical data , Psoriasis/therapy , Adult , Aged , Arthritis, Psoriatic/economics , Arthritis, Psoriatic/pathology , Cross-Sectional Studies , Data Collection , Female , Humans , Male , Middle Aged , Patient Acceptance of Health Care/statistics & numerical data , Psoriasis/economics , Psoriasis/pathology , Severity of Illness Index , Sex Factors , United States
18.
J Am Acad Dermatol ; 68(6): e163-8, 2013 Jun.
Article in English | MEDLINE | ID: mdl-22682885

ABSTRACT

BACKGROUND: Topical medications are a mainstay of psoriasis treatment. Many patients lack education about topicals. This may contribute to low adherence with long-term disease management. OBJECTIVE: We sought to describe educational needs concerning topical treatment for patients with psoriasis. METHODS: Patients' questions regarding topical therapy were collected from a National Psoriasis Foundation webcast on topical medications. The prebroadcast question responses and the postwebcast survey responses were categorized into common themes and ranked by frequency. RESULTS: Thirty percent asked about side effects, with a major emphasis on topical steroids; 16% asked about proper use; and 11% asked about efficacy. Popular new and useful education concerned specific medication facts and information on medication (especially steroid) safety, the need for treatment adherence, and the variety of options available in topical form. LIMITATIONS: The study population consisted of online users expressing interest in the National Psoriasis Foundation educational material, not the general population of patients with psoriasis. CONCLUSIONS: Patient needs can be better met by providing information regarding side effects, proper use, and efficacy of topical medications. Communication regarding treatment changes and adherence to the treatment regimen should also occur.


Subject(s)
Adrenal Cortex Hormones/administration & dosage , Needs Assessment , Patient Education as Topic , Psoriasis/drug therapy , Administration, Topical , Humans , Medication Adherence , Pilot Projects , Webcasts as Topic
19.
J Am Acad Dermatol ; 68(2): 262-9, 2013 Feb.
Article in English | MEDLINE | ID: mdl-22910105

ABSTRACT

BACKGROUND: Multiple systemic treatments are available for moderate to severe psoriasis, but dermatologists' perceptions of these treatments are unknown. Physician perceptions can influence prescribing patterns and patient outcomes, and may help to explain variations in clinical practice. OBJECTIVE: We sought to describe the variation in dermatologist's beliefs about the safety and effectiveness of psoriasis treatments and evaluate how these relate to dermatologist characteristics and treatment preferences. METHODS: We conducted a cross-sectional mail survey of a random sample of 500 National Psoriasis Foundation (NPF) members and 500 American Academy of Dermatology (AAD) members who treat psoriasis. RESULTS: Of 989 clinicians who could be contacted, 246 NPF members and 141 AAD members returned the survey (39% response rate). Respondents perceived infliximab, ustekinumab, cyclosporine, and adalimumab to have the highest likelihood of skin clearance in 3 months (67%-75%). Etanercept, adalimumab, ultraviolet B, and ustekinumab had the lowest perceived likelihood of side effects requiring treatment discontinuation (9%-11%). Up to 49% of respondents "didn't know" the effectiveness or likelihood of side effects; calculated coefficients of variation were higher for perceived likelihood of side effects than perceived effectiveness. There were few significant associations between safety and effectiveness perceptions and respondent characteristics, and treatment preferences were not consistently predictive of perceptions. LIMITATIONS: Only dermatologists with interest in treating psoriasis were surveyed and general perceptions were elicited via survey format. Perceptions may differ between survey respondents and nonrespondents. CONCLUSIONS: Psoriasis providers demonstrate wide variation in their perception of the effectiveness and especially safety of systemic treatments.


Subject(s)
Practice Patterns, Physicians' , Psoriasis/drug therapy , Adalimumab , Antibodies, Monoclonal , Antibodies, Monoclonal, Humanized , Cross-Sectional Studies , Cyclosporine/therapeutic use , Dermatology , Etanercept , Humans , Immunoglobulin G , Infliximab , Perception , Physicians , Receptors, Tumor Necrosis Factor , Ustekinumab
20.
J Am Acad Dermatol ; 68(1): 64-72, 2013 Jan.
Article in English | MEDLINE | ID: mdl-22846688

ABSTRACT

BACKGROUND: Despite widespread dissatisfaction and low treatment persistence in moderate to severe psoriasis, patients' reasons behind treatment discontinuation remain poorly understood. OBJECTIVES: We sought to characterize patient-reported reasons for discontinuing commonly used treatments for moderate to severe psoriasis in real-world clinical practice. METHODS: A total of 1095 patients with moderate to severe plaque psoriasis from 10 dermatology practices who received systemic treatments completed a structured interview. Eleven reasons for treatment discontinuation were assessed for all past treatments. RESULTS: A total of 2231 past treatments were reported. Median treatment duration varied by treatment, ranging from 6.0 to 20.5 months (P < .001). The frequency of each cited discontinuation reasons differed by treatment (all P < .01). Patients who received etanercept (odds ratio [OR] 5.19; 95% confidence interval [CI] 3.23-8.33) and adalimumab (OR 2.10; 95% CI 1.20-3.67) were more likely to cite a loss of efficacy than those who received methotrexate. Patients who received etanercept (OR 0.34; 95% CI 0.23-0.49), adalimumab (OR 0.48; 95% CI 0.30-0.75), and ultraviolet B phototherapy (OR 0.21; 95% CI 0.14-0.31) were less likely to cite side effects than those who received methotrexate, whereas those who received acitretin (OR 1.56; 95% CI 1.08-2.25) were more likely to do so. Patients who underwent ultraviolet B phototherapy were more likely to cite an inability to afford treatment (OR 7.03; 95% CI 3.14-15.72). LIMITATIONS: The study is limited by its reliance on patient recall. CONCLUSIONS: Different patterns of treatment discontinuation reasons are important to consider when developing public policy and evidence-based treatment approaches to improve successful long-term psoriasis control.


Subject(s)
Patient Satisfaction , Psoriasis/drug therapy , Psoriasis/radiotherapy , Acitretin/therapeutic use , Adalimumab , Adult , Anti-Inflammatory Agents/therapeutic use , Antibodies, Monoclonal, Humanized/therapeutic use , Cross-Sectional Studies , Etanercept , Female , Humans , Immunoglobulin G/therapeutic use , Immunosuppressive Agents/therapeutic use , Keratolytic Agents/therapeutic use , Logistic Models , Male , Methotrexate/therapeutic use , Middle Aged , PUVA Therapy/adverse effects , PUVA Therapy/economics , Receptors, Tumor Necrosis Factor/therapeutic use , Surveys and Questionnaires , Treatment Outcome
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