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1.
Artigo em Inglês | MEDLINE | ID: mdl-38744460

RESUMO

BACKGROUND: We analysed the COMparison Between All immunoTherapies for Multiple Sclerosis (NCT03193866), a Swedish nationwide observational study in relapsing-remitting multiple sclerosis (RRMS), to identify trajectories of fatigue and their association with physical disability following start of disease-modifying therapy (DMT). METHODS: Using a group-modelling approach, we assessed trajectories of fatigue with the Fatigue Scale for Motor and Cognitive Functions and physical disability with Expanded Disability Status Scale among 1587 and 1818 individuals who initiated a first DMT and had a first DMT switch, respectively, followed during 2011-2022. We investigated predictors of fatigue trajectories using group membership as a multinomial outcome and calculated conditional probabilities linking membership across the trajectories. RESULTS: We identified five trajectories of fatigue in participants who initiated their first DMT: no fatigue (mean starting values=23.7; 18.2% of population), low (35.5; 23.9%), mild (49.0; 21.6%), moderate (61.3; 20.1%) and severe (78.7; 16.1%). While no, low, mild and severe fatigue trajectories remained stable, the moderate trajectory increased to severe fatigue. Similarly, we identified six fatigue trajectories among participants who did a DMT switch, all indicating stable values over time. Women initiating a first DMT were more likely than men to display a severe fatigue trajectory, relative to the no fatigue one. There was a strong association between fatigue and physical disability trajectories. CONCLUSIONS: In this cohort of people with actively treated RRMS, self-reported fatigue remained stable or increased over the years following DMT start. There was a strong association between fatigue and disability after DMT start.

2.
J Neurol Neurosurg Psychiatry ; 95(2): 134-141, 2024 Jan 11.
Artigo em Inglês | MEDLINE | ID: mdl-37558400

RESUMO

BACKGROUND: We analysed the COMparison Between All immunoTherapies for Multiple Sclerosis (NCT03193866), a Swedish nationwide observational study in relapsing-remitting multiple sclerosis (RRMS), to identify trajectories of processing speed and physical disability after disease-modulating therapy (DMT) start. METHODS: Using a group-modelling approach, we assessed trajectories of processing speed with oral Symbol Digit Modalities Test (SDMT) and physical disability with Expanded Disability Status Scale, from first DMT start among 1645 patients with RRMS followed during 2011-2022. We investigated predictors of trajectories using group membership as a multinomial outcome and calculated conditional probabilities linking membership across the trajectories. RESULTS: We identified 5 stable trajectories of processing speed: low SDMT scores (mean starting values=29.9; 5.4% of population), low/medium (44.3; 25.3%), medium (52.6; 37.9%), medium/high (63.1; 25.8%) and high (72.4; 5.6%). We identified 3 physical disability trajectories: no disability/stable (0.8; 26.8%), minimal disability/stable (1.6; 58.1%) and moderate disability (3.2; 15.1%), which increased to severe disability. Older patients starting interferons were more likely than younger patients starting rituximab to be on low processing speed trajectories. Older patients starting teriflunomide, with more than one comorbidity, and a history of pain treatment were more likely to belong to the moderate/severe physical disability trajectory, relative to the no disability one. There was a strong association between processing speed and physical disability trajectories. CONCLUSIONS: In this cohort of actively treated RRMS, patients' processing speed remained stable over the years following DMT start, whereas patients with moderate physical disability deteriorated in physical function. Nevertheless, there was a strong link between processing speed and disability after DMT start.


Assuntos
Esclerose Múltipla Recidivante-Remitente , Esclerose Múltipla , Humanos , Velocidade de Processamento , Esclerose Múltipla Recidivante-Remitente/complicações , Esclerose Múltipla Recidivante-Remitente/tratamento farmacológico , Cognição , Rituximab
3.
Mult Scler Relat Disord ; 70: 104481, 2023 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-36603296

RESUMO

BACKGROUND: Fatigue is a debilitating symptom of multiple sclerosis (MS), but its relation to sociodemographic and disease-related characteristics has not been investigated in larger studies. The objectives of this study were to evaluate predictors of self-reported fatigue in a Swedish nationwide register-based MS cohort. METHODS: Using a repeated cross-sectional design, we included 2,165 persons with relapsing- remitting and secondary progressive MS with one or multiple Fatigue Scale for Motor and Cognitive Functions (FSMC) scores, which was modelled using multivariable linear regressions for multiple predictors. RESULTS: Only associations to expanded disability status scale (EDSS) and Symbol Digit Modalities Test (SDMT) were considered clinically meaningful among MS-associated characteristics in our main model; compared to mild disability (EDSS 0-2.5), those with severe disability (EDSS ≥6) scored 17.6 (95% CI 13.1-22.2) FSMC points higher, while the difference was 10.7 (95% CI 8.0-13.4) points for the highest and lowest quartiles of SDMT. Differences between highest and lowest quartiles of health-related quality of life (HRQoL) instruments were even greater and considered clinically meaningful; EuroQoL Visual Analogue Scale (EQ-VAS) 31.9 (95% CI 29.9-33.8), Multiple Sclerosis Impact Scale (MSIS-29) psychological component 35.6 (95% CI 33.8-37.4) and MSIS-29 physical component 45.5 (95% CI 43.7-47.4). CONCLUSION: Higher self-reported fatigue is associated with higher disability level and worse cognitive processing speed, while associations to other MS-associated characteristics including MS type, line of disease modifying therapy (DMT), MS duration, relapse and new cerebral lesions are weak. Furthermore, we found a strong correlation between high fatigue rating and lower ratings on health-related quality of life instruments.


Assuntos
Esclerose Múltipla , Humanos , Esclerose Múltipla/psicologia , Qualidade de Vida , Estudos Transversais , Fadiga/psicologia , Medidas de Resultados Relatados pelo Paciente
4.
Artigo em Inglês | MEDLINE | ID: mdl-36411076

RESUMO

BACKGROUND AND OBJECTIVES: B cell-depleting therapies are highly effective in relapsing-remitting multiple sclerosis (RRMS) but are associated with increased infection risk and blunted humoral vaccination responses. Extension of dosing intervals may mitigate such negative effects, but its consequences on MS disease activity are yet to be ascertained. The objective of this study was to determine clinical and neuroradiologic disease activity, as well as B-cell repopulation dynamics, after implementation of extended rituximab dosing in RRMS. METHODS: We conducted a prospective observational study in a specialized-care, single-center setting, including patients with RRMS participating in the COMBAT-MS and MultipleMS observational drug trials, who had received at least 2 courses of rituximab (median follow-up 4.2 years, range 0.1-8.9 years). Using Cox regression, hazard ratios (HRs) of clinical relapse and/or contrast-enhancing lesions on MRI were calculated in relation to time since last dose of rituximab. RESULTS: A total of 3,904 dose intervals were accumulated in 718 patients and stratified into 4 intervals: <8, ≥8 to 12, ≥12 to 18, and ≥18 months. We identified 24 relapses of which 20 occurred within 8 months since previous infusion and 4 with intervals over 8 months. HRs for relapse when comparing ≥8 to 12, ≥12 to 18, and ≥18 months with <8 months since last dose were 0.28 (95% CI 0.04-2.10), 0.38 (95% CI 0.05-2.94), and 0.89 (95% CI 0.20-4.04), respectively, and thus nonsignificant. Neuroradiologic outcomes mirrored relapse rates. Dynamics of total B-cell reconstitution varied considerably, but median total B-cell counts reached lower level of normal after 12 months and median memory B-cell counts after 16 months. DISCUSSION: In this prospective cohort of rituximab-treated patients with RRMS exposed to extended dosing intervals, we could not detect a relation between clinical or neuroradiologic disease activity and time since last infusion. Total B- and memory B-cell repopulation kinetics varied considerably. These findings, relevant for assessing risk-mitigation strategies with anti-CD20 therapies in RRMS, suggest that relapse risk remains low with extended infusion intervals. Further studies are needed to investigate the relation between B-cell repopulation dynamics and adverse event risks associated with B-cell depletion.


Assuntos
Esclerose Múltipla Recidivante-Remitente , Esclerose Múltipla , Humanos , Rituximab/efeitos adversos , Esclerose Múltipla/tratamento farmacológico , Estudos Prospectivos , Fatores Imunológicos/efeitos adversos , Esclerose Múltipla Recidivante-Remitente/tratamento farmacológico , Esclerose Múltipla Recidivante-Remitente/induzido quimicamente , Recidiva , Doença Crônica
5.
Ann Clin Transl Neurol ; 9(9): 1449-1458, 2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-35993445

RESUMO

OBJECTIVE: To estimate risks for all-cause mortality and for severe COVID-19 in multiple sclerosis patients and across relapsing-remitting multiple sclerosis patients exposed to disease-modifying therapies. METHODS: We conducted a Swedish nationwide population-based multi-register linkage cohort study and followed all multiple sclerosis patients (n = 17,692 in March 2020), individually age-, sex-, and region-matched to five population-based controls (n = 86,176 in March 2020) during March 2020-June 2021. We compared annual all-cause mortality within and across cohorts, and assessed incidence rates and relative risks for hospitalization, intensive care admission, and death due to COVID-19 in relation to disease-modifying therapy use, using Cox regression. RESULTS: Absolute all-cause mortality among multiple sclerosis patients was higher from March to December 2020 than in previous years, but relative risks versus the population-based controls were similar to preceding years. Incidence rates of hospitalization, intensive care admission, and death due to COVID-19 remained in line with those for all-cause hospitalization, intensive care admission, and mortality. Among relapsing-remitting patients on rituximab, trends for differences in risk of hospitalization due to COVID-19 remained in the demographics-, socioeconomic status-, comorbidity-, and multiple sclerosis severity-adjusted model. INTERPRETATION: Risks of severe COVID-19-related outcomes were increased among multiple sclerosis patients as a whole compared to population controls, but risk increases were also seen for non-COVID-19 hospitalization, intensive care admission, and mortality, and did not significantly differ during the pandemic compared to pre-pandemic years. The risk conveyed by disease-modifying therapies was smaller than previously assumed, likely as a consequence of the possibility to better control for confounders.


Assuntos
COVID-19 , Esclerose Múltipla , Estudos de Coortes , Humanos , Esclerose Múltipla/tratamento farmacológico , Esclerose Múltipla/epidemiologia , Pandemias , Controle da População
6.
Artigo em Inglês | MEDLINE | ID: mdl-34852680

RESUMO

Objective:To determine if inflammation in proximity of the motor unit may contribute to neurodegeneration in amyotrophic lateral sclerosis (ALS). Methods: We identified all patients diagnosed in Sweden with concurrent ALS and multiple sclerosis (MS), myasthenia gravis (MG), inflammatory polyneuropathies (IP), or dermatopolymyositis (DMPM) during 1991-2014 according to the Swedish Patient Register (N = 263). We validated medical records for 92% of these patients (18 records were not retrieved and three did not contain enough information) and compared patients with a confirmed overlap (N = 28) with an independent sample of patients with solely ALS (N = 271). Results: Ninety-one patients were deemed as not having ALS (34.6%). Among the remaining 151 with validated ALS, 12 had also a confirmed MS diagnosis, nine a confirmed MG diagnosis, four a confirmed IP diagnosis, and three a confirmed DMPM diagnosis. Seventeen of the patients were women and 11 were men. Seventy-nine percent of the patients with a confirmed overlap had MS, MG, IP, or DMPM diagnosed prior to ALS. Compared to patients with only ALS, the concurrent patients were significantly older at symptoms onset, had higher prevalence of bulbar onset, but used Riluzole and noninvasive ventilation less frequently. Conclusions: We found that a high concurrence of ALS and MS/MG/IP/DMPM diagnoses is largely due to diagnostic uncertainty. A minority of patients had a true concurrence, where MS, MG, IP, and DMPM preceded the ALS diagnosis, which might be due to chance alone. Four patients were diagnosed with MG shortly after onset of ALS, suggesting that neurodegeneration might trigger autoimmunity.


Assuntos
Esclerose Lateral Amiotrófica , Miastenia Gravis , Esclerose Lateral Amiotrófica/complicações , Esclerose Lateral Amiotrófica/diagnóstico , Esclerose Lateral Amiotrófica/epidemiologia , Feminino , Humanos , Masculino , Doenças Neuroinflamatórias , Riluzol/uso terapêutico , Suécia/epidemiologia
7.
Artigo em Inglês | MEDLINE | ID: mdl-34565247

RESUMO

With the aim of shedding further light on the role of environmental factors in amyotrophic lateral sclerosis (ALS) etiology, we hereby conducted a historical narrative review to critically appraise the published reports on ALS geographical clusters using the modern interpretation of the Bradford Hill criteria for causation. Our research hypothesis was that the more criteria were met, the greater was the evidence supporting a causal association. We found that cluster studies that met the greatest number of Bradford's Hill criteria regarded the non-protein amino acid ß-N-methylamino-L-alanine (L-BMAA) and exposure to metals and minerals, but the evidence for causation was at best moderate and was poor for other environmental factors. This defective picture might be attributed not only to the methodological approach adopted by published studies, but also to the inherent difficulties in the application of Bradford Hill criteria, due to the complexity of the disease phenotype and the underlying pathogenic mechanisms.


Assuntos
Diamino Aminoácidos , Esclerose Lateral Amiotrófica , Esclerose Lateral Amiotrófica/diagnóstico , Esclerose Lateral Amiotrófica/epidemiologia , Esclerose Lateral Amiotrófica/etiologia , Humanos , Fenótipo
8.
Mult Scler ; 28(4): 632-641, 2022 04.
Artigo em Inglês | MEDLINE | ID: mdl-34264143

RESUMO

BACKGROUND: Depression and use of antidepressants are more common among patients with multiple sclerosis (MS) compared to the general population, but the relation of psychiatric comorbidity to use of different disease-modifying therapies (DMTs) is less clear. OBJECTIVE: To determine whether risk of incident depression or antidepressant use differed across DMTs, and to assess whether depression and antidepressants affected risk of DMT discontinuation and MS relapses. METHODS: We prospectively followed for 8 years a register-based nationwide cohort of 3803 relapsing-remitting MS patients. RESULTS: Patients on rituximab had a lower risk of being diagnosed with depression or initiating antidepressants compared with the reference group treated with interferons (hazard ratio (HR) = 0.72, 95% confidence interval (CI) = 0.54-0.96). Patients diagnosed with depression discontinued interferon treatment to a higher extent than patients without depression (HR = 1.51; 95% CI = 1.15-1.98), as did patients on fingolimod initiating an antidepressant compared to patients who did not initiate an antidepressant (HR = 1.47; 95% CI = 1.04-2.08). CONCLUSIONS: Our results indicate that the choice of DMT is associated with subsequent risk of depression in MS, but further studies are needed to establish whether there is a causal link. Overall, depression and use of antidepressants displayed limited associations with DMT discontinuation and MS relapse.


Assuntos
Esclerose Múltipla Recidivante-Remitente , Esclerose Múltipla , Depressão/tratamento farmacológico , Depressão/epidemiologia , Cloridrato de Fingolimode/efeitos adversos , Humanos , Esclerose Múltipla/tratamento farmacológico , Esclerose Múltipla/epidemiologia , Esclerose Múltipla Recidivante-Remitente/tratamento farmacológico , Esclerose Múltipla Recidivante-Remitente/epidemiologia , Estudos Prospectivos , Recidiva
9.
Artigo em Inglês | MEDLINE | ID: mdl-34296642

RESUMO

Objective: To test two hypotheses: (1) partners of ALS patients have higher mortality due to outcomes related to psychological distress, and (2) parents and siblings of ALS patients have higher mortality due to diseases that co-occur with ALS.Methods: We performed a nationwide, register-based cohort study in Sweden. We included ALS-free partners, biological parents and full siblings (N = 11,704) of ALS patients, as well as ALS-free partners, biological parents and full siblings (N = 14,460,150) of ALS-free individuals, and followed them during 1961-2013. Hazard ratios (HRs) and 95% confidence intervals (CIs) of overall and cause-specific mortality were derived from Cox regression.Results: Partners of ALS patients, compared to partners of ALS-free individuals, displayed higher mortality due to external causes (HR 2.14; 95% CI 1.35-3.41), including suicide (HR 2.44; 95% CI 1.09-5.44) and accidents (HR 2.09; 95% CI 1.12-3.90), after diagnosis of the ALS patients. Parents of ALS patients had a slightly higher overall mortality (HR 1.03; 95% CI 1.00-1.07), compared with parents of ALS-free individuals. This was driven by mortality due to dementias and cardiovascular, respiratory, and skin diseases. Parents of ALS patients had, however, lower mortality than parents of ALS-free individuals due to neoplasms. Siblings of ALS patients had higher mortality due to dementias, and digestive and skin diseases.Conclusions: Increased mortality due to suicide and accidents among partners of ALS patients is likely attributable to severe psychological distress following the ALS diagnosis. Increased mortality due to dementias among parents and full siblings of ALS patients suggests shared mechanisms between neurodegenerative diseases.


Assuntos
Esclerose Lateral Amiotrófica , Demência , Esclerose Lateral Amiotrófica/diagnóstico , Estudos de Coortes , Família , Humanos , Suécia/epidemiologia
10.
Eur J Epidemiol ; 36(10): 1055-1064, 2021 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-33675447

RESUMO

To investigate whether physical and cognitive fitness measured in late adolescence was associated with future risk of Parkinson's disease (PD). The cohort included 1,259,485 Swedish men with physical fitness, body mass index (BMI), resting heart rate (RHR), blood pressure, intelligence quotient (IQ), and stress resilience measured at the age of 17-20 in relation to conscription. Incident cases of PD were ascertained from the Swedish Patient Register. Hazard ratios were estimated from Cox models, after controlling for multiple confounders. We further performed Mendelian randomization (MR) analyses to assess the causality of the associations, using GWAS summary statistics with > 800,000 individuals. During follow-up, we identified 1,034 cases of PD (mean age at diagnosis = 53). Men with an RHR > 100 beats per minute had a higher risk of PD compared to men with an RHR of 60-100 beats per minute (HR = 1.47; 95% CI = 1.08-1.99). Men with IQ above the highest tertile had a higher risk of PD compared to men with an IQ below the lowest tertile (HR = 1.46; 95% CI = 1.19-1.79). We found no association for physical fitness, BMI, blood pressure, or stress resilience. A causal relationship was suggested by the MR analysis between IQ and PD, but not between RHR and PD. RHR and IQ in late adolescence were associated with a higher risk of PD diagnosed at relatively young age. The association of IQ with PD is likely causal, whereas the association of RHR with PD suggests that altered cardiac autonomic function might start before 20 years of age in PD.


Assuntos
Cognição/fisiologia , Frequência Cardíaca/fisiologia , Inteligência , Doença de Parkinson/epidemiologia , Adolescente , Índice de Massa Corporal , Estudos de Coortes , Nível de Saúde , Humanos , Masculino , Análise da Randomização Mendeliana , Fatores de Risco , Suécia/epidemiologia , Adulto Jovem
11.
Artigo em Inglês | MEDLINE | ID: mdl-33331190

RESUMO

Objective: To assess the associations of 43 autoimmune diseases with the subsequent risk of ALS and further evaluate the contribution of familial confounding to these associations.Methods: We conducted a nationwide register-based nested case-control study including 3561 ALS patients diagnosed during 1990-2013 in Sweden and 35,610 controls that were randomly selected from the general population and individually matched to the cases on age, sex, and county of birth. To evaluate the contribution of familial factors on the studied association, we additionally studied the first-degree relatives (siblings and children) of ALS patients and their controls.Results: Patients with ALS had a 47% higher risk of being previously diagnosed with autoimmune disease (OR 1.47, 95% confidence interval [CI] 1.31-1.64), compared with controls. A positive association was noted for several autoimmune diseases, including myasthenia gravis, polymyositis or dermatomyositis, Guillain-Barre syndrome, type 1 diabetes diagnosed younger than 30 years, multiple sclerosis, and hypothyreosis. The increased risk of any autoimmune disease was greatest during the year before ALS diagnosis, likely due to misdiagnosis. A statistically significantly increased risk was also noted during 2-5 years, but not earlier, before ALS diagnosis. First-degree relatives of ALS patients had however no increased risk of autoimmune diseases compared with first-degree relatives of controls.Conclusions: Although it is difficult to completely remove the potential effects of misdiagnosis, there is likely a positive association between autoimmune disease (such as type 1 diabetes and multiple sclerosis) and ALS, which is not fully explained by shared familial confounding factors.


Assuntos
Esclerose Lateral Amiotrófica , Doenças Autoimunes , Esclerose Lateral Amiotrófica/epidemiologia , Esclerose Lateral Amiotrófica/genética , Doenças Autoimunes/complicações , Doenças Autoimunes/epidemiologia , Estudos de Casos e Controles , Criança , Humanos , Suécia/epidemiologia
12.
Seizure ; 81: 8-12, 2020 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-32683268

RESUMO

PURPOSE: To study the association of earlier violence/maltreatment with the occurrence of PNES in a nationwide population sample. METHODS: This is a nested case-control study performed using Swedish nationwide registers. Cases were all individuals born in Sweden between 1941 and 2009 with incident PNES between 2001 and 2013 while resident in Sweden according to the Swedish Patient Register. For each case, 10 controls, alive and PNES-free at time of PNES diagnosis of the matched case, were randomly selected from the Swedish Total Population Register, matched on age and sex. To test the specificity of the association, we conducted two similar analyses for epilepsy and dissociative disorder with motor symptoms or deficit, as comparators to PNES. Registers were examined in search of all coded diagnoses of child maltreatment or violence episodes before the index date among the cases and controls. RESULTS: 885 patients received a first diagnosis of PNES. 7.6 % of cases had a history of violence/maltreatment, compared to 1.1 % of controls, giving a crude OR of 7.9 (95 % CI: 3.7-11.0). The ORs decreased but remained significant after adjustment for socio-economic factors (OR = 6.3, 95 % CI: 4.4-9.0) and psychiatric comorbidities (OR = 5.2, 95 % CI: 3.5-7.9). The association was also evident for epilepsy and dissociative disorder, although of lower magnitude. CONCLUSION: Patients with PNES have a history of violence/maltreatment more frequently than the rest of the population. This association can be influenced by socio-economic factors and the presence of concurrent psychiatric disturbances.


Assuntos
Eletroencefalografia , Convulsões , Estudos de Casos e Controles , Criança , Humanos , Convulsões/epidemiologia , Suécia/epidemiologia , Violência
13.
Curr Opin Neurol ; 32(5): 771-776, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31361627

RESUMO

PURPOSE OF REVIEW: The cause of amyotrophic lateral sclerosis (ALS) remains unknown for most of the patients with the disease. Epidemiologic studies can help describe disease burden and examine its potential risk factors, providing thereby evidence base for future mechanistic studies. With this review, we aimed to provide a summary of epidemiologic studies published during the past 18 months, which studied the incidence and risk factors for ALS. RECENT FINDINGS: An increasing incidence and prevalence of ALS continue to be reported from different parts of the world. Several previously studied risk factors are confirmed as causally related to ALS by Mendelian randomization analysis. The previously known prognostic indicators for ALS appear to be the same across populations. SUMMARY: Provided with the increasing number of patients diagnosed with ALS and the improved societal awareness of the disease, more resources should be allocated to the research and care of ALS. Population-based studies, especially population-based disease registers, should be the priorities in ALS research, and more data from outside Europe are needed in gaining a better global perspective of the disease.


Assuntos
Esclerose Lateral Amiotrófica/epidemiologia , Europa (Continente) , Humanos , Incidência , Prevalência , Fatores de Risco
14.
Artigo em Inglês | MEDLINE | ID: mdl-30296856

RESUMO

OBJECTIVE: We set up the Swedish Motor Neuron Disease (MND) Quality Registry to assure early diagnosis and high-quality health care for all MND patients (mainly amyotrophic lateral sclerosis, ALS), and to create a research base by prospectively following the entire MND population in Sweden. METHODS: Since 2015, the MND Quality Registry continuously collects information about a wide range of clinical measures, biological samples, and quality of life outcomes from all MND patients recruited at the time of MND diagnosis in Sweden and followed at each clinic visit approximately every 12 weeks. The Registry includes an Internet based patient own reporting portal that involves patients in the registration of their current symptoms and health status. RESULTS: As of 20th January 2017, the MND Quality Registry included 99% of the MND patients of the Stockholm area (N = 194), consisting mostly of ALS patients (N = 153, 78.9%), followed by patients labeled as MND due to a neurophysiology finding but not fulfilling the criteria for ALS (N = 20, 10.3%), primary lateral sclerosis (N = 13, 6.7%), and progressive spinal muscular atrophy patients (N = 8, 4.1%). A higher proportion of these patients were women (N = 100, 52%), and women and men had a similar age at symptoms onset (59 years). CONCLUSIONS: Main strengths of the MND Quality Registry are its clinical, quantitative, qualitative, and prospective nature, providing the researchers potential means of identifying appropriate candidates for clinical trials and other research projects, as well as assuring to the patients an effective and adequate time spent on-site with the healthcare professionals.


Assuntos
Doença dos Neurônios Motores/epidemiologia , Doença dos Neurônios Motores/fisiopatologia , Sistema de Registros , Adulto , Distribuição por Idade , Idoso , Idoso de 80 Anos ou mais , Estudos de Coortes , Progressão da Doença , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Doença dos Neurônios Motores/diagnóstico , Suécia/epidemiologia , Fatores de Tempo
15.
Neurology ; 89(6): 578-585, 2017 Aug 08.
Artigo em Inglês | MEDLINE | ID: mdl-28701495

RESUMO

OBJECTIVE: To estimate risks of neurodegenerative and psychiatric diseases among patients with amyotrophic lateral sclerosis (ALS) and their families. METHODS: We conducted a register-based nested case-control study during 1990-2013 in Sweden to assess whether patients with ALS had higher risks of other neurodegenerative and psychiatric diseases before diagnosis. We included 3,648 patients with ALS and 36,480 age-, sex-, and county of birth-matched population controls. We further conducted a follow-up study of the cases and controls to assess the risks of other neurodegenerative and psychiatric diseases after ALS diagnosis. To assess the potential contribution of familial factors, we conducted similar studies for the relatives of patients with ALS and their controls. RESULTS: Individuals with previous neurodegenerative or psychiatric diseases had a 49% increased risk of ALS (odds ratio 1.49, 95% confidence interval 1.35-1.66) compared to individuals without these diseases. After diagnosis, patients with ALS had increased risks of other neurodegenerative or psychiatric diseases (hazard ratio 2.90, 95% confidence interval 2.46-3.43) compared to individuals without ALS. The strongest associations were noted for frontotemporal dementia, Parkinson disease, other dementia, Alzheimer disease, neurotic disorders, depression, stress-related disorders, and drug abuse/dependence. First-degree relatives of patients with ALS had higher risk of neurodegenerative diseases, whereas only children of patients with ALS had higher risk of psychiatric disorders, compared to relatives of the controls. CONCLUSIONS: Familial aggregation of ALS and other neurodegenerative diseases implies a shared etiopathogenesis among all neurodegenerative diseases. The increased risk of psychiatric disorders among patients with ALS and their children might be attributable to nonmotor symptoms of ALS and severe stress response toward the diagnosis.


Assuntos
Esclerose Lateral Amiotrófica/epidemiologia , Família , Predisposição Genética para Doença , Transtornos Mentais/epidemiologia , Idoso , Esclerose Lateral Amiotrófica/genética , Estudos de Casos e Controles , Feminino , Seguimentos , Humanos , Masculino , Transtornos Mentais/genética , Pessoa de Meia-Idade , Razão de Chances , Estudos Prospectivos , Sistema de Registros , Suécia/epidemiologia
16.
Prev Med Rep ; 6: 137-143, 2017 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-28316909

RESUMO

Due to the high stigma surrounding the Human Immunodeficiency Virus (HIV), people living with HIV (PLWH) often reach out peers over the Internet for emotional and social support. The purpose of this study was to assess the characteristics of PLWH who use HIV internet forums. A cross-sectional study was conducted using an online survey investigating demographic characteristics of PLWH, level of satisfaction of the HIV Internet forums, time living with HIV, forum users' anxiety levels, self-reported adherence to antiretroviral treatment (ART), and reasons for missing pills (n = 222). Logistic regression models were constructed to compare the use of general HIV forums with social networking sites, general HIV forums with group emails, and social networking sites with group emails. Two hundred and twenty-two patients responded to the survey. Social networking sites were used by recently diagnosed PLWH who were on antiretroviral treatment (ART) > 1 year. Young patients (≤ 40 years) and those diagnosed < 1 year before, tended to use social networking sites, while older patients (> 40 years), those diagnosed > 5 years, and from low- and middle-income countries, were more likely to use emailing lists. There was no significant difference between PLWH's adherence to treatment and anxiety levels and the usage of different Internet forums. PLWH's Internet resource choice varied depending on the availability of Internet and illness duration. Different segments of the population could be reached via social networking sites versus group emails to provide HIV information.

17.
Prev Med Rep ; 2: 512-6, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-26844111

RESUMO

OBJECTIVE: Human Immunodeficiency Virus (HIV) is a major disease burden worldwide. Challenges include retaining patients in care and optimizing adherence to Antiretroviral Therapy (ART). One possible solution is using mobile phones as reminder tools. The main aim of our study was to identify patient demographic groups least likely to use mobile phones as reminder tools in HIV care. DESIGN: The data came from a cross-sectional study at the Chris Hani Baragwanath Hospital, Soweto Township, South Africa. METHODS: A comprehensive questionnaire was used to interview 883 HIV infected patients receiving ART. Logistic regression analysis was performed to identify the influence of age, gender, education level, marital status, number of sexual partners in the last three months, income level, and employment status on the use of mobile phone as reminders for clinic appointments and taking medication. RESULTS: Patient groups significantly associated with being less likely to use mobile phones as clinic appointment reminders were: a) patients 45 years or older, b) women, and c) patients with only primary or no schooling level. Patient groups significantly associated with being less likely to use mobile phones as medication reminders were: a) patients 35 years or older and b) patients with a lower monthly income. CONCLUSIONS: In this setting being a woman, of older age, lower education, and socio-economic level were risk factors for the low usage of mobile phones as reminder aids. Future studies should assimilate reasons for this, such that patient-specific barriers to implementation are identified and interventions can be tailored.

18.
PLoS One ; 9(4): e95440, 2014.
Artigo em Inglês | MEDLINE | ID: mdl-24743189

RESUMO

BACKGROUND: Human Immunodeficiency Virus (HIV) status disclosure has been shown to provide several benefits, both at the individual and societal levels. AIM: To determine risk factors associated with disclosing HIV status among antiretroviral therapy (ART) recipients in South Africa. SETTING: A cross-sectional study on risk factors for viremia and drug resistance took place at two outpatient HIV clinics in 2008, at a large hospital located in Soweto, South Africa. METHODS: We conducted a secondary data analysis on socio-economic characteristics and HIV status disclosure to anyone, focusing on gender differences. Descriptive and multivariable logistic regression analyses were performed to model the associations between risk factors and HIV status disclosure. Additionally, descriptive analysis was conducted to describe gender differences of HIV status disclosure to partner, parents, parents in law, partner, child, family, employer, and other. PATIENTS: A total of 883 patients were interviewed. The majority were women (73%) with median age of 39 years. RESULTS: Employed patients were less likely to disclose than unemployed (odds ratio (OR) 0.36; 95% confidence interval (CI) 0.1-1.0; p = 0.05)). Women with higher income were more likely to disclose (OR 3.25; 95% CI 0.90-11.7; p = 0.07) than women with lower income, while men with higher income were less likely (OR 0.20; 95% CI 0.02-1.99; p = 0.17) than men with lower income. Men were more likely than women to disclose to their partner (p<0.01), and to partner and family (p<0.01), women were more likely than men to disclose to child and family (p<0.01), to child, family and others (p = 0.01). CONCLUSION: Being employed imposed a risk factor for HIV status disclosure, additionally we found an interaction effect of gender and income on disclosure. Interventions designed to reduce workplace discrimination and gender-sensitive interventions promoting disclosure are strongly recommended.


Assuntos
Revelação/estatística & dados numéricos , Infecções por HIV/epidemiologia , Adulto , Estudos Transversais , Feminino , Humanos , Masculino , Fatores de Risco , Fatores Socioeconômicos , África do Sul
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