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1.
Sci Rep ; 14(1): 15183, 2024 07 02.
Artigo em Inglês | MEDLINE | ID: mdl-38956085

RESUMO

Multiple sclerosis (MS) is uncommon in China and the standard of care is underdeveloped, with limited utilization of disease-modifying treatment (DMT). An understanding of real-world disease burden (including direct medical, non-medical, and indirect costs, such as loss of productivity), is currently lacking in this population. To investigate the overall burden of managing patients with MS in China, a cross-sectional survey of physicians and their consulting patients with MS was conducted in 2021. Physicians provided information on healthcare resource utilization (HCRU; consultations, hospitalizations, tests, medication) and associated costs. Patients provided data on changes in their life, productivity, and impairment of daily activities due to MS. Results were stratified by disease severity using generalized linear models, with a p value < 0.05 considered statistically significant. Patients with more severe disease had greater HCRU, including hospitalizations, consultations and tests/scans, and incurred higher direct and indirect costs and productivity loss, compared with those with milder disease. However, the use of DMT was higher in patients with mild disease severity. With the low uptake and limited efficacy of non-DMT drugs, Chinese patients with MS experience a high disease burden and significant unmet needs. Therapeutic interventions could help save downstream costs and lessen societal burden.


Assuntos
Efeitos Psicossociais da Doença , Custos de Cuidados de Saúde , Esclerose Múltipla , Humanos , Esclerose Múltipla/economia , Esclerose Múltipla/terapia , China/epidemiologia , Feminino , Masculino , Adulto , Pessoa de Meia-Idade , Estudos Transversais , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Recursos em Saúde/economia , Recursos em Saúde/estatística & dados numéricos , Inquéritos e Questionários , Hospitalização/economia , Índice de Gravidade de Doença , População do Leste Asiático
2.
Contemp Clin Trials ; 142: 107544, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38657731

RESUMO

BACKGROUND: Multiple sclerosis (MS) affects nearly 1 million people and is estimated to cost $85.4 billion in the United States annually. People with MS have significant barriers to receiving care and telemedicine could substantially improve access to specialized, comprehensive care. In cross-sectional analyses, telemedicine has been shown to be feasible, have high patient and clinician satisfaction, reduce patient costs and burden, and enable a reasonable assessment of disability. However, no studies exist evaluating the longitudinal impact of telemedicine care for MS. Here we describe the study protocol for VIRtual versus UsuAL In-office care for Multiple Sclerosis (VIRTUAL-MS). The main objective of the study is to evaluate the impact of telemedicine for MS care on: patient clinical outcomes, economic costs, patient, and clinician experience. METHODS: This two-site randomized clinical trial will enroll 120 adults with a recent diagnosis of MS and randomize 1:1 to receive in-clinic vs. telemedicine care for 24 months. The primary outcome of the study is worsening in any one of the four Multiple Sclerosis Functional Composite 4 (MSFC4) measures at 24 months. Other study outcomes include patient and clinician satisfaction, major healthcare costs, Expanded Disability Status Scale, treatment adherence, and digital outcomes. CONCLUSION: The results of this study will directly address the key gaps in knowledge about longitudinal telemedicine-enabled care in an MS population. It will inform clinical care implementation as well as design of trials in MS and other chronic conditions. TRIAL REGISTRATION: NCT05660187.


Assuntos
Esclerose Múltipla , Satisfação do Paciente , Telemedicina , Humanos , Esclerose Múltipla/terapia , Esclerose Múltipla/economia , Telemedicina/organização & administração , Adulto , Feminino , Masculino , Pessoa de Meia-Idade , Custos de Cuidados de Saúde , Estados Unidos
3.
Mult Scler Relat Disord ; 85: 105540, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38489948

RESUMO

BACKGROUND: Access to, standardization and reimbursement of multidisciplinary care for people with MS (PwMS) is lacking in many countries. Therefore, this study aims to describe the current multidisciplinary care for people with MS (PwMS) in Belgium and identify benefits, needs and future perspectives METHODS: A survey for PwMS questioned various aspects of MS and viewpoints on care. For MS nurses (MSN) and neurologists, employment, education, job-content, care organization and perspectives were inquired. Descriptive and univariate statistics were performed RESULTS: The PwMS survey comprised 916 respondents with a mean age of 46±12.7 years and 75,4 % of the respondents being female. The majority of the participants had relapsing remitting MS (60.8 %) and the mean patient determined disease steps (PDDS) was 2.0 (IQR=3). 65.3 % and 60.4 % of the PwMS reported having access to a multidisciplinary team (MDT) or MSN. Access to an MSN was associated with more frequent disease modifying treatment (p=.015), spasticity (p=.042) and gait treatment (p=.035), but also more physiotherapy (p=.004), driver's license adjustment (p<.001) and a higher employment rate (p=.004). MDT access was associated with more frequent symptomatic bladder treatment (p=.047), higher physiotherapy rate (p<.001), higher work- (p=.002), insurance- (p<.001) and home support measures (p=.019). PwMS without an available MDT more often indicated that MS care needs improvement (p<.001). MSN's (n = 22) were mainly funded through various budgets, including hospital and neurology practice budgets. Finally, 69 % and 75 % neurologists (n = 62) working without an MSN or MDT stated a need of such support and 61 % agreed that MDT's should be organized at hospital-network level CONCLUSION: MDT and MSN availability may enhance medical and socio-economic support for PwMS. Guidelines, alignment and reimbursement are needed.


Assuntos
Esclerose Múltipla , Neurologistas , Equipe de Assistência ao Paciente , Humanos , Feminino , Masculino , Pessoa de Meia-Idade , Adulto , Bélgica , Esclerose Múltipla/terapia , Esclerose Múltipla/economia , Neurologistas/estatística & dados numéricos , Inquéritos e Questionários , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos
4.
Mult Scler Relat Disord ; 85: 105555, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38547547

RESUMO

BACKGROUND: Despite the global availability of multiple sclerosis (MS) treatments, accessing and financing them in Southeast Asia (SEA) remains a challenge. This descriptive survey-based study aimed to describe the current state of MS treatment access and local access dynamics within this region. METHODS: The survey questionnaire, comprising of 15 closed-ended and five open-ended questions, was developed by three neurologists with expertise in MS and routine MS patient management, or had training in neuroimmunology. Questionnaire development was guided by the recent Atlas of MS and in alignment with the Access to Treatment framework, focusing on MS diagnosis and treatment issues in SEA. Fifteen neurologists experienced in managing MS across the region were identified as key informants for this study. RESULTS: All fifteen neurologists participated in the survey via email and videoconferencing between January 2020 and February 2023, which included the following countries: Brunei, Cambodia, Indonesia, Malaysia, Myanmar, Lao PDR, Philippines, Singapore, Thailand, Timor-Leste, and Vietnam. All had at least five years of experience in managing MS patients and six had previously completed a neuroimmunology fellowship programme. SEA countries showed disparities in healthcare financing, availability of neurologists, MS treatments, and investigative tools. Access to MS disease-modifying treatments (DMTs) is hindered by high cost, lack of MS specialists, and weak advocacy efforts. On-label DMTs are not listed as essential medicines regionally except for interferon beta1a and teriflunomide in Malaysia. On-label monoclonals are available only in Malaysia, Singapore, and Thailand. Generic on-label DMTs are unavailable due to lack of distributorship and expertise in using them. Off-label DMTs (azathioprine, methotrexate, and rituximab) predominate in most SEA countries. Other challenges include limited access to investigations, education, and knowledge about DMTs among general neurologists, and absence of registries and MS societies. Patient champions, communities, and MS organisations have limited influence on local governments and pharmaceutical companies. Despite its increasing prevalence, there is a lack of concerted priority setting due to MS being perceived as a rare, non-communicable disease. CONCLUSION: This study highlights the distinct dynamics, challenges, and research gaps within this region, and provides suggestions to improve MS diagnosis, education, and medicine access.


Assuntos
Acessibilidade aos Serviços de Saúde , Esclerose Múltipla , Neurologistas , Humanos , Sudeste Asiático , Esclerose Múltipla/tratamento farmacológico , Esclerose Múltipla/terapia , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Neurologistas/estatística & dados numéricos , Inquéritos e Questionários , Fatores Imunológicos/uso terapêutico , Agentes de Imunomodulação/uso terapêutico
5.
World J Urol ; 42(1): 136, 2024 Mar 13.
Artigo em Inglês | MEDLINE | ID: mdl-38478090

RESUMO

AIMS: The aims of the present study were to assess the effectiveness of transcutaneous tibial nerve stimulation (TTNS) on overactive bladder (OAB) symptoms and on urodynamic parameters in patients with multiple sclerosis (PwMS) and to seek predictive factors of satisfaction. METHODS: All PwMS who performed 12-24 weeks of TTNS and who underwent urodynamic assessment before and after treatment between June 2020 and October 2022 were included retrospectively. Data collected were bladder diaries, symptoms assessed with Urinary Symptoms Profile (USP), and urodynamic parameters (bladder sensations, detrusor overactivity, and voiding phase). Patients with improvement rated as very good or good on Patient Global Impression of Improvement (PGI-I) score were considered as responders. RESULTS: Eighty-two patients were included (mean age: 47.1 ± 11.5 years, 67 (82%) were women). The mean USP OAB sub-score decreased from 7.7 ± 3.5 to 6.0 ± 3.4 (p < 0.0001). On bladder diaries, voided volumes, void frequency, and the proportion of micturition done at urgent need to void significantly improved with TTNS (p < 0.05). No significant change was found in urodynamic parameters. According to the PGI-I, 34 (42.5%) patients were good responders. The only parameter associated with higher satisfaction was the percentage of micturition done at urgent need to void before the initiation of the treatment (39.8% ± 30.5 in the responder group vs 25.1% ± 25.6 in the low/no responder group; p = 0.04). CONCLUSION: TTNS improves OAB symptoms in PwMS, without significant changes on urodynamics. A high rate of strong or urgent need to void in daily life was associated with higher satisfaction.


Assuntos
Esclerose Múltipla , Estimulação Elétrica Nervosa Transcutânea , Bexiga Urinária Hiperativa , Humanos , Feminino , Adulto , Pessoa de Meia-Idade , Masculino , Bexiga Urinária Hiperativa/complicações , Urodinâmica/fisiologia , Esclerose Múltipla/complicações , Esclerose Múltipla/terapia , Estudos Retrospectivos , Nervo Tibial , Resultado do Tratamento
6.
Curr Opin Neurol ; 37(3): 245-251, 2024 06 01.
Artigo em Inglês | MEDLINE | ID: mdl-38506756

RESUMO

PURPOSE OF REVIEW: We discuss racial and ethnic disparities in multiple sclerosis (MS), outcomes, and social determinants of health (SDoH). We also provide essential considerations needed to bridge the gap in inequalities, including broader representation of racial and ethnic people in clinical trials and research in general and the inclusion of better measures of living conditions. RECENT FINDINGS: The incidence and prevalence of MS have become more diverse in the USA. There is increased recognition that racial and ethnic health disparities and inequities exist due to adverse social conditions. Clinical trials have failed to be inclusive and diverse. Training in health disparity is an essential priority of funding sources, and designing clinical trials that consider the barriers these populations face can close significant gaps. SUMMARY: The incidence, prevalence, and awareness of MS have seen an incline in diverse racial and ethnic populations. Health disparities exist in MS with Black, Hispanic, and indigenous populations appearing to have worse outcomes. SDoH play a significant role in causing these health disparities. Accessibility to clinical trials and treatment are barriers these populations face. Strategic and earnest interventions considering SDoH are critically needed to develop solutions that collectively improve health and MS care for all.


Assuntos
Disparidades nos Níveis de Saúde , Esclerose Múltipla , Determinantes Sociais da Saúde , Humanos , Etnicidade , Disparidades em Assistência à Saúde/etnologia , Esclerose Múltipla/etnologia , Esclerose Múltipla/terapia , Esclerose Múltipla/epidemiologia , Estados Unidos/epidemiologia , Grupos Raciais , Negro ou Afro-Americano , Hispânico ou Latino , Indígenas Norte-Americanos
7.
Mult Scler Relat Disord ; 84: 105507, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-38412758

RESUMO

Multiple sclerosis (MS) patients experience long-term deterioration of neurological function, reduced quality of life, long-lasting treatment cycles, and an increased risk of early workability loss imposing an economic burden to society. Autologous haematopoietic stem cell transplantation (AHSCT) has shown promising treatment effects for relapsing remitting MS (RRMS). This study employs a micro-costing approach to estimate healthcare utilization and costs associated with AHSCT in Norwegian RRMS patients. Patient-level data were extracted from medical journals of 30 RRMS patients receiving AHSCT treatment at Haukeland University Hospital in the period from January 2015 to January 2018. The time horizon for the analysis was from the pretransplant screening until one year after AHSCT. A correlation was found between patient body weight and total healthcare cost. The average total healthcare cost of AHSCT for RRMS patients was estimated to EUR 66 304 (95% CI: EUR 63 598 - EUR 69 010) including costs associated with the pre-AHSCT period, AHSCT treatment phases and one-year follow-up. The majority of the costs, EUR 64 329, occurred during the treatment phase and within the first 100 days after AHSCT. The results indicate that long-term healthcare cost savings may be achieved using AHSCT in selected patients with aggressive RRMS. This is due to the high costs of most used disease modifying treatments. Further research including long-term clinical data is needed to determine the cost-effectiveness of this treatment.


Assuntos
Transplante de Células-Tronco Hematopoéticas , Esclerose Múltipla Recidivante-Remitente , Esclerose Múltipla , Humanos , Esclerose Múltipla Recidivante-Remitente/tratamento farmacológico , Esclerose Múltipla/terapia , Qualidade de Vida , Transplante de Células-Tronco Hematopoéticas/métodos , Aceitação pelo Paciente de Cuidados de Saúde , Resultado do Tratamento
8.
Qual Life Res ; 33(5): 1359-1371, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38401014

RESUMO

PURPOSE: The Comprehensive assessment of Acceptance and Commitment Therapy (CompACT) is a 23-item questionnaire measuring psychological flexibility, a quality of life protective factor. An 18-item version was recently produced. We assessed validity and reliability of CompACT, and equivalence of paper and electronic (eCompACT) versions in people with multiple sclerosis (PwMS) in Italy, Germany and Spain. METHODS: We used confirmatory factor analysis and assessed CompACT-23 and CompACT-18 measurement invariance between the three language versions. We assessed construct validity (Spearman's correlations) and internal consistency (Cronbach's alpha). Test-retest reliability (intraclass correlation coefficient, ICC) and equivalence of paper and eCompACT (ICC and linear regression model for repeated measures) were assessed in subsamples of PwMS. RESULTS: A total of 725 PwMS completed the study. The three-factor structure of the CompACT-23 showed poor fit (RMSEA 0.07; CFI 0.82; SRMR 0.08), while the fit of the CompACT-18 was good (RMSEA 0.05; CFI 0.93; SRMR 0.05). Configural and partial metric invariance were confirmed, as well as partial scalar invariance (reached when five items were allowed to vary freely). The CompACT-18 showed good internal consistency (all alpha ≥ 0.78); and test-retest reliability (all ICCs ≥ 0.86). Equivalence between paper and eCompACT was excellent (all ICCs ≥ 0.86), with no mode, order, or interaction effects. CONCLUSION: Results support using the refined CompACT-18 as a three-factor measure of psychological flexibility in PwMS. Paper and eCompACT-18 versions are equivalent. CompACT-18 can be used cross-culturally, but sub-optimal scalar invariance suggests that direct comparison between the three language versions should be interpreted with caution.


Assuntos
Terapia de Aceitação e Compromisso , Comparação Transcultural , Esclerose Múltipla , Psicometria , Humanos , Esclerose Múltipla/psicologia , Esclerose Múltipla/terapia , Feminino , Masculino , Pessoa de Meia-Idade , Reprodutibilidade dos Testes , Inquéritos e Questionários/normas , Adulto , Análise Fatorial , Qualidade de Vida/psicologia , Alemanha , Espanha , Itália , Idoso
9.
Neurol Sci ; 45(7): 3333-3345, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38388897

RESUMO

INTRODUCTION: People with multiple sclerosis (PwMS) exhibit a spectrum of needs that extend beyond solely disease-related determinants. Investigating unmet needs from the patient perspective may address daily difficulties and optimize care. Our aim was to identify patterns of unmet needs among PwMS and their determinants. METHODS: We conducted a cross-sectional multicentre study. Data were collected through an anonymous, self-administered online form. To cluster PwMS according to their main unmet needs, we performed agglomerative hierarchical clustering algorithm. Principal component analysis (PCA) was applied to visualize cluster distribution. Pairwise comparisons were used to evaluate demographics and clinical distribution among clusters. RESULTS: Out of 1764 mailed questionnaires, we received 690 responses. Access to primary care was the main contributor to the overall unmet need burden. Four patterns were identified: cluster C1, 'information-seekers with few unmet needs'; cluster C2, 'high unmet needs'; cluster C3, 'socially and assistance-dependent'; cluster C4, 'self-sufficient with few unmet needs'. PCA identified two main components in determining the patterns: the 'public sphere' (access to information and care) and the 'private sphere' (need for assistance and social life). Older age, lower education, longer disease duration and higher disability characterized clusters with more unmet needs in the private sphere. However, demographic and clinical factors failed in explaining the four identified patterns. CONCLUSION: Our study identified four unmet need patterns among PwMS, emphasizing the importance of personalized care. While clinical and demographic factors provide some insight, additional variables warrant further investigation to fully understand unmet needs in PwMS.


Assuntos
Esclerose Múltipla , Aprendizado de Máquina não Supervisionado , Humanos , Masculino , Feminino , Estudos Transversais , Pessoa de Meia-Idade , Esclerose Múltipla/diagnóstico , Esclerose Múltipla/terapia , Adulto , Necessidades e Demandas de Serviços de Saúde , Inquéritos e Questionários , Avaliação das Necessidades , Análise por Conglomerados , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos
10.
Tidsskr Nor Laegeforen ; 144(2)2024 02 13.
Artigo em Inglês, Norueguês | MEDLINE | ID: mdl-38349100

RESUMO

Many Norwegian patients with multiple sclerosis choose to travel abroad for stem cell therapy at their own expense and risk. Based on the current knowledge base, selected patients should now be offered this therapy in Norway.


Assuntos
Esclerose Múltipla , Humanos , Esclerose Múltipla/terapia , Noruega , Serviços de Saúde , Terapia Baseada em Transplante de Células e Tecidos
11.
Mult Scler Relat Disord ; 81: 105153, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-38043364

RESUMO

BACKGROUND: Multiple Sclerosis (MS) is a neuroinflammatory disorder which affects 2.8 million people world-wide. A growing body of evidence shows ethnic disparities in MS. This review aims to evaluate differences, based upon ethnic background, in the incidence, prevalence, disease course, and efficacy of disease-modifying therapies (DMTs) among people with MS (PwMS). METHOD: Ethnicities were classified as White, Black, Hispanic, Asian, and Middle Eastern and North African (MENA). A literature search was conducted using the PubMed search engine to identify articles on MS and ethnicity that were published in the English language between 01/01/2005 and 31/05/2022. RESULTS: 101 studies met all inclusion criteria. Although the incidence and prevalence of MS varied among ethnicities, findings were inconsistent and depended on the continent of the study. Ethnicity may have an impact on the disease course. PwMS from Black, Hispanic, and MENA, but not Asian ethnicities, appeared to accumulate physical disability at a faster rate than those from White ethnicity. Although there was a lack of studies evaluating the relative safety and efficacy of DMTs among various ethnicities, interferon-beta was found to be less efficacious in PwMS from Black ethnicity. CONCLUSIONS: Further studies, with more uniform definitions of ethnicity are required to comprehensively understand ethnic disparities in MS, in particular to identify underlying causes, to facilitate the delivery of personalised medical care and avoid inequity.


Assuntos
Disparidades nos Níveis de Saúde , Esclerose Múltipla , Humanos , Etnicidade , Esclerose Múltipla/epidemiologia , Esclerose Múltipla/terapia , Grupos Raciais
12.
Value Health Reg Issues ; 39: 49-56, 2024 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-37979543

RESUMO

OBJECTIVES: To measure the health spillover effect in caregivers of patients with multiple sclerosis (MS), we aimed to select the best instrument from 2 common health-related quality of life (QoL) instruments, the 3-level EQ-5D (EQ-5D-3L) and the Health Utilities Index Mark 3 (HUI-3), by assessing them. METHODS: Using consecutive sampling, 452 primary caregivers of patients with MS were asked to fill out a Care-related QoL instrument (CarerQol-7D), EQ-5D-3L, HUI-3, and the Center for Epidemiologic Studies Depression Scale between October 2019 and May 2020. Convergent and clinical validity were assessed to measure spillover effect in caregivers of patients with MS. RESULTS: A strong correlation of health-utility scores between EQ-5D-3L and HUI-3 (r = 0.914, P < .01) was observed. The 95% limit of agreement (LoA) for CarerQol-7D and HUI-3 (-10.6 to 8.2) was narrower than the LoA for CarerQol-7D and EQ-5D-3L (-15.1 to 17.1). Both EQ-5D-3L and HUI-3 proved clinical validity for the QoL of caregivers. The CarerQoL-7D score was significantly lower in female (P < .001), single (P < .014), lower-educated (P < .001), parent's relatives (P < .001), and unemployed (P < .001) caregivers. CONCLUSIONS: We found that both, EQ-5D-3L and HUI-3, were appropriate for measuring caregivers' QoL, although HUI-3 was a better choice because of its narrower LoA. Our findings suggest researchers should use HUI-3 to measure the quality-adjusted life-year of caregivers to aggregate with the QoL of patients in the denominator of an economic evaluation equation, such as the cost-effective ratio.


Assuntos
Esclerose Múltipla , Qualidade de Vida , Humanos , Feminino , Cuidadores , Esclerose Múltipla/terapia , Inquéritos e Questionários , Reprodutibilidade dos Testes
13.
J Manag Care Spec Pharm ; 29(12): 1354-1368, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37976077

RESUMO

BACKGROUND: Multiple sclerosis (MS) is chronic progressive disease that poses a significant economic burden to patients and health care systems in the United States. We conducted a systematic literature review to provide up-to-date insights on the economic burden of MS in the United States. OBJECTIVE: To comprehensively review and summarize the latest published evidence on the economic burden of MS with a focus on cost, resource use, and work productivity. METHODS: A systematic literature search was conducted using the Embase and Medline databases to identify studies, published between January 2011 and July 2022, reporting cost, resource use, or work productivity outcomes among people with MS in the United States. Clinical trials, economic modeling studies, and review articles were excluded. Details of eligible studies, including study design, patient population, and study outcomes for the overall population, as well as subgroups of interest, were extracted and summarized qualitatively. RESULTS: Overall, 65 studies reporting cost, resource use, or work productivity data were included with majority of studies using claims data. The direct costs associated with MS ranged from $16,614 (2006) to $72,744 (2017) per patient per year with diseasemodifying therapies (DMTs) being the major cost contributors accounting for 43%-78%. The indirect costs reported ranged from $9,122 (2017) to $30,601 (2011) per patient per year with absenteeism, early retirement, and informal care being the key drivers for indirect costs. Costs, resource use, and work impairment were significantly higher for patients with severe disability compared with those with mild disability. Pharmacy costs were the major cost drivers in patients with mild, moderate, and severe disability. Similarly, patients with relapses incurred significantly higher costs, resource use, and work impairment compared with those without relapses. Additional hospitalization charges were the major driver of higher costs in patients who experienced relapses compared with those without relapses. CONCLUSIONS: Direct costs, particularly DMTs, appear to be the major cost drivers for people with MS in the United States. Availability of lower-cost therapies may considerably decrease the economic burden on these patients and the health care systems. Future research focusing on indirect costs, intangible costs, and their contributors would contribute to further understanding of economic burden to avoid underestimation of the financial burden experienced by the patients.


Assuntos
Esclerose Múltipla , Humanos , Estados Unidos , Esclerose Múltipla/terapia , Estresse Financeiro , Efeitos Psicossociais da Doença , Doença Crônica , Recidiva , Custos de Cuidados de Saúde
14.
Mult Scler Relat Disord ; 80: 105085, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37931487

RESUMO

BACKGROUND: In the context of the COVID-19 pandemic, people with multiple sclerosis (pwMS) have been particularly vulnerable to adverse outcomes due to increased risk of severe infection and/or widespread disruptions in care. The CopeMS study led by The University of Texas at Austin and the MS Association of America investigates the long-term impact of the COVID-19 pandemic on healthcare access, disease modifying therapy (DMT) utilization and outcomes of pwMS. METHODS: This retrospective cohort analysis used Optum's de-identified Clinformatics® Data Mart Database (CDM), a large de-identified administrative healthcare claims database to identify pwMS who were continuously enrolled from 01/01/2019 to 12/31/2020 and assessed changes in the utilization of DMTs and healthcare services during the COVID-19 pandemic compared to the year prior. Additionally, a national survey of pwMS and healthcare providers (HCPs) was conducted to further understand the indirect impact of the pandemic on healthcare resource utilization (HCRU), outcomes and prescription patterns. RESULTS: Out of 529 pwMS in our national survey, over 47 % reported that their overall health and neurologic symptoms had deteriorated during the COVID-19 pandemic, with increased anxiety, and inability to maintain exercise habits as leading perceived causes for worsening. Survey respondents reported widespread disruption of MS-related services during the pandemic. In the Optum database, we identified 39,209 pwMS validating inclusion criteria. We observed a decrease in the utilization of MS-related services in 2020 compared to 2019. Significantly fewer pwMS had visits with their neurologist, primary care provider, physical or occupational therapist despite an increased utilization of telemedicine services. Fewer pwMS had magnetic resonance imaging (MRI) studies of the brain or spinal cord during the pandemic. Only 22.2 % of HCPs surveyed agreed that the perceived risk of more severe COVID-19 infection on a specific DMT influenced their therapeutic decisions. In the Optum database, individuals with an established diagnosis of MS prior to 2019 saw decreases in utilization of platform and moderate efficacy DMTs. In this group, those over the age of 55 saw a decrease in utilization of B-cell therapies (rate ratio 0.79, CI 0.75-0.83), whereas individuals under the age of 55 saw an increase in utilization of B-cell therapies (rate ratio 1.10, CI 1.03-1.17). We did not see any difference in rates of starting DMTs in persons diagnosed in 2019 prior to the pandemic and those diagnosed in 2020. Compared to 2019, B-cell therapies were prescribed more frequently in pwMS diagnosed in 2020 who were younger than 55 or commercially insured (rate ratio 1.35, CI 1.11-1.63). CONCLUSION: The COVID-19 pandemic was associated with perceived worsening of neurological symptoms in pwMS. Despite the expansion of telemedicine, we observed decreased access to healthcare services important to the comprehensive care of pwMS. Additionally, we observed changes in DMT utilization in pwMS during the pandemic, particularly in older adults with an established diagnosis of MS.


Assuntos
COVID-19 , Seguro , Esclerose Múltipla , Humanos , Idoso , Pandemias , Estudos Retrospectivos , Ansiedade , Esclerose Múltipla/epidemiologia , Esclerose Múltipla/terapia
15.
Lancet Digit Health ; 5(10): e668-e678, 2023 10.
Artigo em Inglês | MEDLINE | ID: mdl-37775187

RESUMO

BACKGROUND: Depression is three to four times more prevalent in patients with neurological and inflammatory disorders than in the general population. For example, in patients with multiple sclerosis, the 12-month prevalence of major depressive disorder is around 25% and it is associated with a lower quality of life, faster disease progression, and higher morbidity and mortality. Despite its clinical relevance, there are few treatment options for depression associated with multiple sclerosis and confirmatory trials are scarce. We aimed to evaluate the safety and efficacy of a multiple sclerosis-specific, internet-based cognitive behavioural therapy (iCBT) programme for the treatment of depressive symptoms associated with the disease. METHODS: This parallel-group, randomised, controlled, phase 3 trial of an iCBT programme to reduce depressive symptoms in patients with multiple sclerosis was carried out at five academic centres with large outpatient care units in Germany and the USA. Patients with a neurologist-confirmed diagnosis of multiple sclerosis and depressive symptoms were randomly assigned (1:1:1; automated assignment, concealed allocation, no stratification, no blocking) to receive treatment as usual plus one of two versions of the iCBT programme Amiria (stand-alone or therapist-guided) or to a control condition, in which participants received treatment as usual and were offered access to the iCBT programme after 6 months. Masking of participants to group assignment between active treatment and control was not possible, although raters were masked to group assignment. The predefined primary endpoint, which was analysed in the intention-to-treat population, was severity of depressive symptoms as measured by the Beck Depression Inventory-II (BDI-II) at week 12 after randomisation. This trial is registered at ClinicalTrials.gov, NCT02740361, and is complete. FINDINGS: Between May 3, 2017, and Nov 4, 2020, we screened 485 patients for eligibility. 279 participants were enrolled, of whom 101 were allocated to receive stand-alone iCBT, 85 to receive guided iCBT, and 93 to the control condition. The dropout rate at week 12 was 18% (50 participants). Both versions of the iCBT programme significantly reduced depressive symptoms compared with the control group (BDI-II between-group mean differences: control vs stand-alone iCBT 6·32 points [95% CI 3·37-9·27], p<0·0001, effect size d=0·97 [95% CI 0·64-1·30]; control vs guided iCBT 5·80 points [2·71-8·88], p<0·0001, effect size d=0·96 [0·62-1·30]). Clinically relevant worsening of depressive symptoms was observed in three participants in the control group, one in the stand-alone iCBT group, and none in the guided iCBT group. No occurrences of suicidality were observed during the trial and there were no deaths. INTERPRETATION: This trial provides evidence for the safety and efficacy of a multiple sclerosis-specific iCBT tool to reduce depressive symptoms in patients with the disease. This remote-access, scalable intervention increases the therapeutic options in this patient group and could help to overcome treatment barriers. FUNDING: National Multiple Sclerosis Society (USA).


Assuntos
Terapia Cognitivo-Comportamental , Transtorno Depressivo Maior , Esclerose Múltipla , Humanos , Depressão/terapia , Esclerose Múltipla/complicações , Esclerose Múltipla/terapia , Transtorno Depressivo Maior/terapia , Qualidade de Vida , Análise Custo-Benefício , Internet
16.
Mult Scler Relat Disord ; 72: 104609, 2023 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-36940612

RESUMO

BACKGROUND: As their disease evolves, most patients with progressive forms of multiple sclerosis (MS) develop particular healthcare needs that are not always addressed with usual follow-up. To adapt neurological care to these patients, we created a specific consultation for patients with progressive MS in our centre in 2019. OBJECTIVES: To explore the main unmet care needs of patients with progressive MS in our setting, and to establish the usefulness of the specific consultation to address them. METHODS: Literature review and interviews with patients and healthcare professionals were conducted to identify the main unmet needs in routine follow-up. Two questionnaires were developed, assessing the importance of the unmet needs identified and the usefulness of the consultation to meet them, for patients under follow-up in the specific consultation and their informal caregivers. RESULTS: Forty-one patients and nineteen informal caregivers participated. The most important unmet needs were the information about the disease, access to social services and coordination between specialists. A positive correlation was found between the importance of these unmet needs and the responsiveness to each of them in the specific consultation. CONCLUSIONS: The creation of a specific consultation may improve attention to the healthcare needs of patients with progressive MS.


Assuntos
Esclerose Múltipla Crônica Progressiva , Esclerose Múltipla , Humanos , Cuidadores , Estudos Transversais , Necessidades e Demandas de Serviços de Saúde , Esclerose Múltipla/terapia , Esclerose Múltipla Crônica Progressiva/terapia , Encaminhamento e Consulta
17.
Expert Rev Pharmacoecon Outcomes Res ; 23(4): 419-430, 2023 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-36820619

RESUMO

INTRODUCTION: This study assessed the societal costs of multiple sclerosis (MS) in Lebanon, categorized by disease severity. METHODS: This was a cross-sectional, prevalence-based, bottom-up study using a face-to-face questionnaire. Patients were stratified by disease severity using the expanded disability status scale (EDSS); EDSS scores of 0-3, 4-6.5, and 7-9 indicating respectively mild, moderate, and severe MS. All direct medical, nonmedical, and indirect costs related to reduced productivity were accounted for regardless of who bore them. Costs, collected from various sources, were presented in international US dollars (US$) using the purchasing power parity (PPP) conversion rate. RESULTS: We included 210 Lebanese patients (mean age: 43.3 years; 65.7% females). The total annual costs per patient were PPP US$ 33,117 for 2021, 12.4 times higher than the nominal GDP per capita. Direct costs represented 52% (US$ 17,185), direct nonmedical costs 8% (US$ 2,722), and indirect costs 40% (US$ 13, 211) of the mean annual costs. The total annual costs per patient increased with disease severity and were PPP US$ 29,979, PPP US$ 36,125, PPP US$ 39,136 for mild, moderate, and severe MS, respectively. CONCLUSION: This study reveals the huge economic burden of MS on the Lebanese healthcare system and society.


Assuntos
Esclerose Múltipla , Feminino , Humanos , Adulto , Masculino , Esclerose Múltipla/terapia , Estudos Transversais , Efeitos Psicossociais da Doença , Líbano , Inquéritos e Questionários , Custos de Cuidados de Saúde , Índice de Gravidade de Doença , Qualidade de Vida
18.
Neurology ; 100(9): e899-e910, 2023 02 28.
Artigo em Inglês | MEDLINE | ID: mdl-36450607

RESUMO

BACKGROUND AND OBJECTIVES: Multiple sclerosis (MS), a leading cause of nontraumatic neurologic disability in young adults, exerts a substantial economic burden on the health care system. The objective of this study was to quantify the excess health care costs of MS in British Columbia, Canada. METHODS: A retrospective-matched cohort study of patients with MS was conducted using population-based administrative health data from 2001 to 2020. Patients with MS who satisfied a validated case definition were matched to 5 unique controls without MS on sex, age, and cohort entry date. Patients and controls were followed to the end of 2020 or to their last health care resource use, whichever came first. We calculated the direct medical costs for each individual, including outpatient services use, hospital admissions, and dispensed medications. We used generalized linear models with an identity link and normal distribution to estimate the excess cost of MS as the mean cost difference between patients with MS and controls. All costs were reported in 2020 Canadian dollars. RESULTS: A total of 17,071 patients with MS were matched to 85,355 controls. Overall, 72.4% were female, and the mean age at cohort entry date was 46.1 years. The excess cost of MS was $6,881 (95% CI: $6,713, $7,049) per patient-year. Inpatient, outpatient, and medication costs accounted for 25%, 10%, and 65% of excess costs, respectively. Excess costs were higher in patients with MS with at least one disease-modifying therapy (DMT) prescription ($13,267; 95% CI: $12,992-$13,542) compared with non-DMT users ($3,469; 95% CI: $3,297-$3,641) and even higher among frequent DMT users ($24,835; 95% CI: $24,528-$25,141). Patients with MS with a history of at least one relapse requiring hospitalization had higher excess costs ($10,543; 95% CI: $10,136-$10,950) compared with patients with MS without a relapse; hospitalizations accounted for 51% of the costs in this group. The excess cost of hospitalizations was $1,391 lower among frequent DMT users than non-DMT users. DISCUSSION: The economic burden of MS is considerable, with medications, particularly DMTs, being the largest cost driver. Future studies should investigate how disease management strategies, including early diagnosis and timely use of DMTs, could offset future and ongoing costs while improving patients' quality of life.


Assuntos
Esclerose Múltipla , Adulto Jovem , Humanos , Feminino , Pessoa de Meia-Idade , Masculino , Colúmbia Britânica/epidemiologia , Estudos de Coortes , Estudos Retrospectivos , Esclerose Múltipla/terapia , Esclerose Múltipla/tratamento farmacológico , Qualidade de Vida , Custos de Cuidados de Saúde , Custos de Medicamentos
19.
Neurol Sci ; 44(3): 999-1008, 2023 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-36441342

RESUMO

BACKGROUND: Comorbid conditions are common in people with multiple sclerosis (pwMS). They can delay diagnosis and negatively impact the disease course, progression of disability, therapeutic management, and adherence to treatment. OBJECTIVE: To quantify the economic impact of comorbidity in multiple sclerosis (MS), based on cost-of-illness estimates made using a bottom-up approach. METHODS: A retrospective study was carried out in two northern Italian areas. The socio-demographic and clinical information, including comorbidities data, were collected through ad hoc anonymous self-assessment questionnaire while disease costs (direct and indirect costs of disease and loss of productivity) were estimated using a bottom-up approach. Costs were compared between pwMS with and without comorbidity. Adjusted incremental costs associated with comorbidity were reported using generalized linear models with log-link and gamma distributions or two-part models. RESULTS: 51.0% of pwMS had at least one comorbid condition. Hypertension (21.0%), depression (15.7%), and anxiety (11.7%) were the most prevalent. PwMS with comorbidity were more likely to use healthcare resources, such as hospitalizations (OR = 1.21, p < 0.001), tests (OR = 1.59, p < 0.001), and symptomatic drugs and supplements (OR = 1.89, p = 0.012), and to incur non-healthcare costs related to investment (OR = 1.32, p < 0.001), transportation (OR = 1.33, p < 0.001), services (OR = 1.33, p < 0.001), and informal care (OR = 1.43, p = 0.16). Finally, they experienced greater productivity losses (OR = 1.34, p < 0.001) than pwMS without comorbidity. The adjusted incremental annual cost per patient due to comorbidity was €3,106.9 (13% of the overall costs) with MS disability found to exponentially affect annual costs. CONCLUSION: Comorbidity has health, social, and economic consequences for pwMS.


Assuntos
Esclerose Múltipla , Humanos , Esclerose Múltipla/epidemiologia , Esclerose Múltipla/terapia , Qualidade de Vida , Estudos Retrospectivos , Comorbidade , Efeitos Psicossociais da Doença , Custos de Cuidados de Saúde
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