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1.
Artigo em Inglês | MEDLINE | ID: mdl-38928900

RESUMO

No published studies have investigated the correlation between religiosity, spirituality, mental health, and idiopathic inflammatory myopathy (IIM) or systemic autoimmune myopathy. Therefore, we aimed to evaluate the association between religiosity/spirituality, sociodemographic factors, and the mental health of IIM patients. This is a multicenter case-control study that included 151 patients with IIMs and 95 individuals without autoimmune diseases (controls), held between August 2022 and April 2023. This study used a semi-structured questionnaire that included sociodemographic information and the juxtaposition of the following questionnaires: the Attitudes Related to Spirituality Scale (ARES); the Duke University Religion Index (DUKE), which is composed of the organizational religious affiliation (ORA), non-organizational religious affiliation (NORA), and intrinsic religiosity (IR) domains; and the General Health Questionnaire-12 (GHQ-12). Data were analyzed using Epi Info software 7.2.5 (Centers for Disease Control and Prevention, Atlanta, GA, USA). A comparison between the mean values of the ARES, DUKE, and GHQ-12 scales was made using the Wilcoxon-Mann-Whitney and Kruskal-Wallis tests. A logistic regression test was used with the variables whose difference was statistically significant in the univariate analysis. Correlation analysis was performed using the Spearman rho coefficient. A higher prevalence of evangelicals and a lower prevalence of Catholics (p < 0.050) were seen in the IIM group compared to controls. Positive association was demonstrated between IIMs and the pardo ethnicity (OR = 2.26, 95% CI = 1.20-4.25, p = 0.011), highest ORA (OR = 2.81, 95% CI = 1.53-5.15, p < 0.001), NORA (OR = 3.99, 95% CI = 1.94-8·18, p < 0.001), IR (OR = 5.27, 95% CI = 2.32-11.97, p < 0.001), and ARES values (OR = 1.08, 95% CI = 1.04-1.13, p < 0.001). Mental health levels were compared between the groups (p > 0.999). Therefore, higher levels of religiosity and spirituality were observed in the IIM group than in the control group, but there was a similar distribution of mental health levels. The following can be cited as advantages of the present study: (i) the large sample for a rare disease with the presence of a control group; (ii) the multicenter characteristic with participation from three regions of Brazil; (iii) being the first study to map aspects of religiosity, spirituality, and mental health in IIMs.


Assuntos
Saúde Mental , Religião , Espiritualidade , Humanos , Estudos de Casos e Controles , Masculino , Feminino , Pessoa de Meia-Idade , Brasil/epidemiologia , Adulto , Miosite/psicologia , Idoso , Inquéritos e Questionários
2.
Rheumatology (Oxford) ; 60(11): 5060-5072, 2021 11 03.
Artigo em Inglês | MEDLINE | ID: mdl-33956947

RESUMO

OBJECTIVES: To date, there is almost no information concerning the sexual health of patients with idiopathic inflammatory myopathies (IIM). This cross-sectional study aimed to compare sexual function in patients with IIM to age-/sex-matched healthy controls (HC) and determine the potential impact of clinical features on sexual function. METHODS: In total, 122 women (61 with IIM, 61 age-matched HC) and 22 men (11 with IIM, 11 age-matched HC) aged 18-80 years completed gender-specific selection of 7 well-established and validated questionnaires assessing sexual health and function (Female Sexual Function Index, Brief Index of Sexual Function for Women, Sexual Function Questionnaire, Sexual Quality of Life Questionnaire-Female, International Index of Erectile Function, Male Sexual Health Questionnaire, Sexual Quality of Life Questionnaire-Male). Results were compared between patients and HC and correlated with selected disease-related features. RESULTS: The prevalence of sexual dysfunction in IIM was 59% in women (vs 40% in HC), and 64% (vs 9% in HC) in men. Men and women with IIM reported significantly impaired sexual function compared with sex-/age-matched HC. Decreased sexual function was associated with muscle weakness, disability, physical inactivity, fatigue, depression and decreased quality of life. CONCLUSIONS: Our results suggest that sexual dysfunction is common among IIM patients and more attention should be paid to this aspect of the disease.


Assuntos
Miosite/fisiopatologia , Comportamento Sexual/fisiologia , Saúde Sexual , Adulto , Idoso , Estudos de Casos e Controles , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Miosite/psicologia , Diafragma da Pelve/fisiopatologia
3.
Int J Rheum Dis ; 24(6): 809-814, 2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33881230

RESUMO

AIM: The idiopathic inflammatory myopathies (IIM) are rare autoimmune diseases that are usually chronic and often present with skeletal muscle inflammation and weakness. We sought to examine the impact of IIM in a cohort of 50 South Australian patients on health-related quality of life (HRQOL) and work productivity (WP). We uniquely categorized patients across gender, IIM subtypes, employment status, and also whether there was extramuscular involvement from IIM. METHODS: Multiple modalities were used, as recommended by the International Myositis Assessment and Clinical Studies Group (IMACS), to assess the impact of IIM, including manual muscle strength testing (MMT-8), the Physician and Patient Global Activity Assessments (PHGAA, PTGAA), Myositis Disease Activity Assessment Tool (MDAAT), and serum creatinine kinase (CK) levels. The impacts of IIM on HRQOL and WP were analyzed using the Medical Outcomes Study 36-items Short Form (SF-36) and Work Productivity and Activity Impairment (WPAI) questionnaires, respectively. RESULTS: We found significantly lower HRQOL outcome scores in most of the SF-36 domains when compared to the most recent population norms (P ≤ .01). Physical health was predominantly affected with relative preservation of emotional health. There were also significant associations between MMT-8, PHGAA and PTGAA scores and HRQOL and WP. CONCLUSIONS: Our findings highlight the significant impact of IIM on HRQOL and WP in a well-characterized cohort of patients with IIM within Australia, and therefore the importance of a holistic approach to the management of these patients.


Assuntos
Absenteísmo , Miosite/psicologia , Presenteísmo , Qualidade de Vida/psicologia , Trabalho , Adulto , Idoso , Estudos de Coortes , Eficiência , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Músculo Esquelético/patologia , Miosite/epidemiologia , Perfil de Impacto da Doença , Austrália do Sul/epidemiologia
4.
Rheumatology (Oxford) ; 60(12): 5713-5723, 2021 12 01.
Artigo em Inglês | MEDLINE | ID: mdl-33714992

RESUMO

OBJECTIVE: Idiopathic inflammatory myopathies (IIMs) cause proximal muscle weakness, which affects the ability to carry out the activities of daily living. Wearable physical activity monitors (PAMs) objectively assess continuous activity and potentially have clinical usefulness in the assessment of IIMs. We examined the psychometric characteristics for PAM outcomes in IIMs. METHODS: Adult IIM patients were prospectively evaluated (at baseline, 3 months and 6 months) in an observational study. A waist-worn PAM (ActiGraph GT3X-BT) assessed average step counts/minute, peak 1-minute cadence, and vector magnitude/minute. Validated myositis core set measures (CSMs) including manual muscle testing (MMT), physician global disease activity (MD global), patient global disease activity (Pt global), extramuscular disease activity (Ex-muscular global), HAQ-DI (HAQ disability index), muscle enzymes, and patient-reported physical function were evaluated. Test-retest reliability, construct validity, and responsiveness were determined for PAM measures and CSMs, using Pearson correlations and other appropriate analyses. RESULTS: A total of 50 adult IIM patients enrolled [mean (s.d.) age, 53.6 (14.6); 60% female, 94% Caucasian]. PAM measures showed strong test-retest reliability, moderate-to-strong correlations at baseline with MD global (r = -0.37 to -0.48), Pt global (r=-0.43 to -0.61), HAQ-DI (r = -0.47 to -0.59) and MMT (r = 0.37-0.52), and strong discriminant validity for categorical MMT and HAQ-DI. Longitudinal associations with MD global (r=-0.38 to -0.44), MMT (r = 0.50-0.57), HAQ-DI (r = -0.45 to -0.55) and functional tests (r = 0.30-0.65) were moderate to strong. PAM measures were responsive to MMT improvement ≥10% and moderate-to-major improvement on ACR/EULAR myositis response criteria. Peak 1-minute cadence had the largest effect size and standardized response means. CONCLUSION: PAM measures showed promising construct validity, reliability, and longitudinal responsiveness; especially peak 1-minute cadence. PAMs are able to provide valid outcome measures for future use in IIM clinical trials.


Assuntos
Atitude Frente a Saúde , Exercício Físico/fisiologia , Monitorização Fisiológica/instrumentação , Miosite/fisiopatologia , Qualidade de Vida , Desenho de Equipamento , Teste de Esforço/métodos , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Miosite/psicologia , Estudos Prospectivos , Reprodutibilidade dos Testes
5.
PLoS One ; 16(2): e0244959, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-33571213

RESUMO

OBJECTIVE: Health-related quality of life is impaired in idiopathic inflammatory myopathies. This study aimed to identify the main areas of the health-related quality of life environment domain that are affected in patients with myositis. METHODS: A qualitative study was performed using focus groups and applying the International Classification of Functioning, Disability, and Health. Participants were recruited from a cohort of 323 adult inflammatory myopathy patients consulting at a reference center for idiopathic inflammatory myopathy in Spain, selected by the maximum variation strategy, and placed in focus groups with 5 to 7 patients per group. The number of focus groups required was determined by data saturation. RESULTS: Twenty-five patients distributed in 4 focus groups were interviewed. The verbatim provided 54 categories directly related with environmental factors. Those associated with products or substances for personal consumption (e110), health professionals (e355), health services, systems and policies (e580), products and technology for personal use in daily living (e115), and immediate family (e310) were the ones most frequently reported. CONCLUSION: The results of this study led to identification of several environmental factors that affect the health-related quality of life of patients with myositis. Remedial interventions should be designed to address some of these factors.


Assuntos
Miosite/fisiopatologia , Miosite/psicologia , Atividades Cotidianas , Adulto , Idoso , Estudos de Coortes , Avaliação da Deficiência , Meio Ambiente , Feminino , Grupos Focais/métodos , Humanos , Classificação Internacional de Funcionalidade, Incapacidade e Saúde , Masculino , Pessoa de Meia-Idade , Miosite/metabolismo , Qualidade de Vida , Espanha , Inquéritos e Questionários
6.
Nurs Health Sci ; 23(2): 312-324, 2021 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-33511721

RESUMO

Idiopathic inflammatory myopathies (IIM) are systemic autoimmune connective tissue diseases. The safety and effectiveness of exercise for patients with idiopathic inflammatory myopathies remains unclear. This study aimed to systematically review the evidence for physical exercise among patients with idiopathic inflammatory myopathies. Relevant experimental studies were identified through searching the PubMed, Cochrane, Embase, Scopus, and CINAHL databases, and studies involving any type of physical exercise for ≥1 month were considered. The primary outcome was muscle strength, and the secondary outcomes included aerobic fitness, functional performance, health status, quality of life, activities of daily living, pain, and fatigue. Eight randomized controlled trials and thirteen nonrandomized uncontrolled trials were reviewed. Physical exercise appeared safe, with several positive effects. However, selection or allocation biases and small sample sizes affected the certainty of the evidence. While physical exercise appeared safe for patients with idiopathic inflammatory myopathies with several positive effects, studies of a higher methodological quality and involving patients with active disease are needed. Furthermore, to design optimal exercise programs, consistent and sensitive outcome measures are needed to facilitate comparisons of results from different studies.


Assuntos
Exercício Físico/fisiologia , Força Muscular/fisiologia , Miosite/diagnóstico , Miosite/reabilitação , Qualidade de Vida/psicologia , Atividades Cotidianas , Terapia por Exercício , Humanos , Fadiga Muscular/fisiologia , Debilidade Muscular , Miosite/psicologia , Treinamento Resistido , Resultado do Tratamento
7.
Rheumatology (Oxford) ; 60(2): 907-910, 2021 02 01.
Artigo em Inglês | MEDLINE | ID: mdl-33175137

RESUMO

OBJECTIVE: The COVID-19 pandemic and the subsequent effects on healthcare systems is having a significant effect on the management of long-term autoimmune conditions. The aim of this study was to assess the problems faced by patients with idiopathic inflammatory myopathies (IIM). METHODS: An anonymized eSurvey was carried out with a focus on effects on disease control, continuity of medical care, drug procurance and prevalent fears in the patient population. RESULTS: Of the 608 participants (81.1% female, median (s.d.) age 57 (13.9) years), dermatomyositis was the most frequent subtype (247, 40.6%). Patients reported health-related problems attributable to the COVID-19 pandemic (n = 195, 32.1%); specifically 102 (52.3%) required increase in medicines, and 35 (18%) required hospitalization for disease-related complications. Over half (52.7%) of the surveyed patients were receiving glucocorticoids and/or had underlying cardiovascular risk factors (53.8%), placing them at higher risk for severe COVID-19. Almost one in four patients faced hurdles in procuring medicines. Physiotherapy, critical in the management of IIM, was disrupted in 214 (35.2%). One quarter (159, 26.1%) experienced difficulty in contacting their specialist, and 30 (4.9%) were unable to do so. Most (69.6%) were supportive of the increased use of remote consultations to maintain continuity of medical care during the pandemic. CONCLUSION: This large descriptive study suggests that the COVID-19 pandemic has incurred a detrimental effect on continuity of medical care for many patients with IIM. There is concern that delays and omissions in clinical care may potentially translate to poorer outcomes in the future.


Assuntos
Antirreumáticos/uso terapêutico , COVID-19 , Continuidade da Assistência ao Paciente , Miosite/terapia , Modalidades de Fisioterapia , Telemedicina , Tempo para o Tratamento , Adulto , Idoso , Dermatomiosite/fisiopatologia , Dermatomiosite/psicologia , Dermatomiosite/terapia , Progressão da Doença , Medo/psicologia , Feminino , Glucocorticoides/uso terapêutico , Conhecimentos, Atitudes e Prática em Saúde , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Hospitalização/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Miosite/fisiopatologia , Miosite/psicologia , Miosite de Corpos de Inclusão/fisiopatologia , Miosite de Corpos de Inclusão/psicologia , Miosite de Corpos de Inclusão/terapia , Polimiosite/fisiopatologia , Polimiosite/psicologia , Polimiosite/terapia , SARS-CoV-2 , Inquéritos e Questionários , Reino Unido , Estados Unidos
8.
Best Pract Res Clin Rheumatol ; 32(5): 640-650, 2018 10.
Artigo em Inglês | MEDLINE | ID: mdl-31203922

RESUMO

Macrophagic myofasciitis (MMF) syndrome is a subtype of autoimmune/inflammatory syndrome induced by adjuvants (ASIA) or Shoenfeld's syndrome, characterized by the presence of stereotyped inflammatory lesions at muscle biopsy attesting the long-term persistence of aluminum hydroxide particles at the site of previous immunization. Most frequently reported symptoms are chronic arthromyalgias and fatigue and cognitive complaint. MMF-associated cognitive disorder (MACD) is characterized by the dysfunctioning of attention, executive functions, short-term term and long-term memory, and, in some instances, left ear extinction. MACD is expressed in a chronic, nonevolving, well-defined syndromic framework within which the expression in terms of severity differs from one patient to another. While brain MRI is usually noncontributive, functional imaging using SPECT and PET has revealed the existence of a suggestive pathological pattern with involvement of posterior associative areas, temporal lobes, limbic system, and cerebellum. Put together, neuropsychological and functional neuroimaging investigations support the view that MACD relates to organic central nervous system involvement.


Assuntos
Transtornos Cognitivos/etiologia , Fasciite/complicações , Fasciite/psicologia , Miosite/complicações , Miosite/psicologia , Humanos
9.
Arthritis Care Res (Hoboken) ; 69(11): 1743-1750, 2017 11.
Artigo em Inglês | MEDLINE | ID: mdl-28118525

RESUMO

OBJECTIVE: Extensive studies on health-related quality of life (HRQoL) in idiopathic inflammatory myopathies (IIMs) are lacking. Our objective was to document HRQoL and to identify factors associated with a reduced HRQoL in patients with IIM. METHODS: A total of 1,715 patients (median age 49.9 years, 70% female, 87% white) who met probable or definite Bohan and Peter criteria or Griggs criteria for myositis were included from the Myovision registry. HRQoL was ascertained using the Short Form 12 (SF-12) health survey questionnaire. HRQoL physical component summary (PCS) and mental component summary (MCS) scores in relation to different patient and disease characteristics were compared to scores from matched normative data from the US general population and rheumatoid arthritis (RA) patients. Bivariate and multiple linear regression analyses were performed to assess the association between HRQoL and patient and disease parameters. RESULTS: The mean SF-12 summary scores were significantly lower in IIM patients than in the normative and RA populations. A diagnosis of inclusion body myositis, older age, patient-reported negative effect of disease on work, presence of another co-occurring autoimmune disease, polypharmacy, and IIM-associated lung disease and joint involvement were significantly associated with lower PCS scores. Lower MCS scores were associated with joint involvement and a negative effect of disease on work. CONCLUSION: In this large study of patient-reported outcomes in IIM, an association was found between multiple disease characteristics and reduced HRQoL, mostly in the physical domain. In the US, the HRQoL of IIM patients was found to be lower than that of the general population and RA patients.


Assuntos
Nível de Saúde , Inquéritos Epidemiológicos/métodos , Miosite/diagnóstico , Miosite/psicologia , Qualidade de Vida/psicologia , Adulto , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Miosite/epidemiologia , Valor Preditivo dos Testes , Sistema de Registros
10.
Int J Neurosci ; 127(6): 516-523, 2017 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-27412148

RESUMO

BACKGROUND: In patients with autoimmune diseases who still derive benefit from high dose intravenous immunoglobulin (IVIg) treatment, some physicians resort to subcutaneous (SC) Ig as a replacement therapy. OBJECTIVE: To collect quality of life (QoL) and tolerance data on SCIg in patients for whom the switch from IVIg to SCIg is essential to maintain treatment. METHODS: This observational study included patients with either idiopathic inflammatory myopathies (IIM) or chronic dysimmune peripheral neuropathies (CDPN) treated with IVIg, who had been switched to SCIg administration for at least three months. The main objective was to describe the impact of SCIg on QoL after six months, using the generic Short-Form 36 questionnaire (SF-36). The secondary objectives were to evaluate SCIg tolerance and clinical efficiency. RESULTS: Eight centres recruited 12 IIM patients and two centres recruited 11 CDPN patients. Neither the physical nor the mental health SF-36 component summaries showed any QoL deterioration during the six-month study period and all IIM and CDPN patients remained clinically stable during the same period. The most frequent adverse effects were injection site reactions (50%), cutaneous tissue disorders (18.2%), and nervous system disorders (13.6%). Two serious adverse events (myocarditis and cerebrovascular accident) occurred in two patients. CONCLUSION: In these rare inflammatory diseases, high dose SCIg administration (which can be home based) has no deleterious effect on patient QoL. It appears to be a safe and efficient alternative to hospital-based IVIg.


Assuntos
Imunoglobulinas/administração & dosagem , Fatores Imunológicos/administração & dosagem , Miosite/tratamento farmacológico , Miosite/psicologia , Doenças do Sistema Nervoso Periférico/tratamento farmacológico , Doenças do Sistema Nervoso Periférico/psicologia , Qualidade de Vida/psicologia , Adulto , Idoso , Creatina Quinase/sangue , Tolerância a Medicamentos , Feminino , Humanos , Imunoglobulinas Intravenosas/uso terapêutico , Injeções Subcutâneas , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , Resultado do Tratamento
11.
J Rheumatol ; 42(12): 2492-5, 2015 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-25934817

RESUMO

OBJECTIVE: The Outcome Measures in Rheumatology (OMERACT) myositis working group was established to examine patient-reported outcomes (PRO) as well as to validate patient-reported outcome measures (PROM) in myositis. METHODS: Qualitative studies using focus group interviews and cognitive debriefing of the myositis-specific Myositis Activities Profile (MAP) were used to explore the experience of adults living with polymyositis (PM) and dermatomyositis (DM). RESULTS: Preliminary results underscore the importance of patient input in the development of PROM to ensure content validity. Results from multicenter focus groups indicate the range of symptoms experienced including pain, fatigue, and impaired cognitive function, which are not currently assessed in myositis. Preliminary cognitive debriefing of the MAP indicated that while content was deemed relevant and important, several activities were not included; and that questionnaire construction and wording may benefit from revision. A research agenda was developed to continue work toward optimizing PRO assessment in myositis with 2 work streams. The first would continue to conduct and analyze focus groups until saturation in the thematic analysis was achieved to develop a framework that encompassed the patient-relevant aspects of myositis. The second would continue cognitive debriefing of the MAP to identify potential areas for revision. There was agreement that further work would be needed for inclusion body myositis and juvenile dermatomyositis, and that the inclusion of additional contributors such as caregivers and individuals from the pharmaceutical/regulatory spheres would be desirable. CONCLUSIONS: The currently used PROM do not assess symptoms or the effects of disease that are most important to patients; this emphasizes the necessity of patient involvement. Our work provides concrete examples for PRO identification.


Assuntos
Miosite/psicologia , Miosite/terapia , Avaliação de Resultados da Assistência ao Paciente , Qualidade de Vida , Adaptação Psicológica , Adulto , Conferências de Consenso como Assunto , Fadiga/epidemiologia , Fadiga/fisiopatologia , Feminino , Grupos Focais , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Miosite/diagnóstico , Medição da Dor , Índice de Gravidade de Doença , Estresse Psicológico , Suécia
12.
Arthritis Care Res (Hoboken) ; 67(7): 1031-40, 2015 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-25623494

RESUMO

OBJECTIVE: To investigate the association of low-density (lipid-rich) muscle measured by computed tomography (CT) with skeletal muscle function and health-related quality of life in idiopathic inflammatory myopathies (IIMs). METHODS: Seventeen patients and 10 healthy controls underwent CT of the midthigh to quantify high- (30-100 HU) and low-density (0-29 HU) skeletal muscle areas. Anthropometric measures, body composition, physical activity level, health-related quality of life, skeletal muscle strength, endurance, and fatigue were assessed. Patients were compared against controls. The relationship of anthropometric, body composition, and disease variables with measures of muscle function were examined using Spearman's test on the patient group. Linear regression was used to assess the age- and disease-adjusted relationship of muscle quality to physical function and muscle strength. RESULTS: Patients had higher body fat percentage (P = 0.042), trunk fat mass (P = 0.042), android:gynoid fat (P = 0.033), and midthigh low-density muscle/total muscle area (P < 0.001) compared to controls. Midthigh low-density muscle/total muscle area was negatively correlated with self-reported physical function, strength, and endurance (the Short Form 36 [SF-36] health survey physical functioning [P = 0.004], manual muscle testing [P = 0.020], knee maximal voluntary isometric contraction/thigh mineral-free lean mass [P < 0.001], and the endurance step test [P < 0.001]), suggesting that muscle quality impacts function in IIM. Using multiple linear regression adjusted for age, global disease damage, and total fat mass, poor muscle quality as measured by midthigh low-density muscle/total muscle area was negatively associated with SF-36 physical functioning (P = 0.009). CONCLUSION: Midthigh low-density muscle/total muscle area is a good predictor of muscle strength, endurance, and health-related quality of life as it pertains to physical functioning in patients with IIMs.


Assuntos
Força Muscular/fisiologia , Músculo Esquelético/diagnóstico por imagem , Músculo Esquelético/fisiologia , Miosite/diagnóstico por imagem , Qualidade de Vida , Tomografia Computadorizada por Raios X , Adulto , Idoso , Estudos Transversais , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Miosite/psicologia , Valor Preditivo dos Testes , Qualidade de Vida/psicologia , Coxa da Perna/diagnóstico por imagem , Tomografia Computadorizada por Raios X/métodos
13.
Clin Rheumatol ; 33(8): 1119-25, 2014 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-24894104

RESUMO

Health-related quality of life (HRQoL) and well-being are concepts that attempt to objectively capture a person's subjective perceptions of vitality and energy. Our objectives were to determine HRQoL and well-being in adult patients diagnosed with inflammatory myopathy who attended at our outpatient clinic and to investigate clinical and biological correlations with these concepts. Sixty-two patients (52 women), with a mean age of 50.7 years, were evaluated in this cross-sectional study-47 with dermatomyositis and 15 with polymyositis. Disease damage and activity were assessed with the International Myositis Assessment and Clinical Studies-validated instruments. Manual muscle testing was used to evaluate muscle strength. Quality of life was evaluated with the WHO instrument (WHO Quality of Life Measure (WHOQOL-BREF)), adapted for use in the Spanish population, and well-being with the WHO-Five Well-Being Index (WHO-5). t tests were conducted to examine differences in HRQoL and well-being outcomes in relation to several disease- and patient-related variables. Correlation analyses were performed with the Pearson correlation coefficient. None of the clinical or biological variables analyzed was significantly associated with a poorer HRQoL or well-being. No differences in HRQoL or WHO-5 well-being score were found between the two myositis subgroups (dermatomyositis vs. polymyositis). Disease activity and muscle weakness were negatively associated with the physical and environmental domains of the HRQoL, respectively (p < 0.002), but not with well-being. Disease duration did not have a significant impact on HRQoL or well-being. In adult patients with myositis, disease activity and muscle weakness are associated with poorer HRQoL in the physical health and environmental domains, respectively.


Assuntos
Miosite/psicologia , Satisfação Pessoal , Qualidade de Vida/psicologia , Adulto , Idoso , Estudos Transversais , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade
14.
J Neurol ; 261(5): 992-8, 2014 May.
Artigo em Inglês | MEDLINE | ID: mdl-24658663

RESUMO

The aim of this work is to evaluate disease-related mortality and the course of the disease including functional outcome and quality of life. We did a follow-up study on a large prospective cohort of 62 patients with subacute-onset idiopathic inflammatory myopathy (IIM) (dermatomyositis (n = 24), nonspecific myositis (n = 34), necrotizing autoimmune myopathy (n = 4)) after treatment with corticosteroids only (randomized controlled trial comparing daily high-dosage prednisone with pulse therapy of dexamethasone). Development of connective tissue disease (CTD) or malignancy, disease course and mortality, functional outcome and quality of life were evaluated. After a mean follow-up of 3 years (SD 1.5), 22 % had developed a CTD and 17 % a malignancy. Disease-related mortality was 15 %. A monophasic disease course was found in 27 %. Most patients had a chronic (35 %) or polyphasic disease (35 %) course and experienced single or multiple relapses. Sixteen patients (33 %) were off medication after a mean of 1 year of treatment. Disability scores improved particularly in the first 18 months. At follow-up, 68 % still perceived disabilities. Quality of life scores as measured by the short-form (SF)-36 improved in the first 18 months. After 18 months, scores remained stable during the next years of follow-up and remained low compared to a normal population. (1) Two-thirds of the patients with an IIM have a polyphasic or chronic disease course and need maintenance treatment. (2) The impact on functional outcome and quality of life is considerable and does not improve further after 18 months.


Assuntos
Progressão da Doença , Miosite/diagnóstico , Miosite/epidemiologia , Adulto , Estudos de Coortes , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Miosite/psicologia , Estudos Prospectivos , Fatores de Tempo
16.
J Inorg Biochem ; 105(11): 1457-63, 2011 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-22099155

RESUMO

Macrophagic myofasciitis (MMF) is characterized by specific muscle lesions assessing long-term persistence of aluminum hydroxide within macrophages at the site of previous immunization. Affected patients are middle-aged adults, mainly presenting with diffuse arthromyalgias, chronic fatigue, and cognitive dysfunction. Representative features of MMF-associated cognitive dysfunction (MACD) include (i) dysexecutive syndrome; (i) visual memory; (iii) left ear extinction at dichotic listening test. In present study we retrospectively evaluated the progression of MACD in 30 MMF patients. Most patients fulfilled criteria for non-amnestic/dysexecutive mild cognitive impairment, even if some cognitive deficits seemed unusually severe. MACD remained stable over time, although dysexecutive syndrome tended to worsen. Long-term follow-up of a subset of patients with 3 or 4 consecutive neuropsychological evaluations confirmed the stability of MACD with time, despite marked fluctuations.


Assuntos
Hidróxido de Alumínio/efeitos adversos , Disfunção Cognitiva/induzido quimicamente , Fasciite/induzido quimicamente , Miosite/induzido quimicamente , Adulto , Idoso , Encéfalo/patologia , Disfunção Cognitiva/complicações , Disfunção Cognitiva/psicologia , Depressão/etiologia , Fasciite/complicações , Fasciite/psicologia , Seguimentos , Humanos , Imageamento por Ressonância Magnética , Pessoa de Meia-Idade , Miosite/complicações , Miosite/psicologia , Testes Neuropsicológicos , Estudos Retrospectivos
18.
Autoimmun Rev ; 8(5): 355-9, 2009 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-19041955

RESUMO

Idiopathic inflammatory myopathies (IIM) are a heterogeneous group of diseases that share some symptoms such as muscular weakness and inflammation of skeletal muscle. Complete recovery of muscle function with pharmacological treatment does not always occur, suggesting that physical inability is a great concern for these patients. In this context, it has been speculated that physical exercise could result in functional benefits to patients with IIM, leading to an improvement in quality of life. In fact, recent studies of polymyositis (PM) and dermatomyositis (DM) support the notion that exercise training improves or at least stabilizes muscle strength and functional ability without inducing disease flares. Importantly, these benefits were observed not only during the chronic phase, but also in the course of active disease. This positive effect was found to be long term, as demonstrated by a six-month significant improvement in exercise capacity and strength. Together, these findings indicate that a well controlled exercise program can be recommended for patients with DM and PM. The optimal exercise modality training and the underlying mechanism for this encouraging response remain to be determined in future studies.


Assuntos
Dermatomiosite/terapia , Terapia por Exercício , Miosite/terapia , Polimiosite/terapia , Animais , Eletromiografia , Exercício Físico/fisiologia , Humanos , Atrofia Muscular , Miosite/fisiopatologia , Miosite/psicologia , Qualidade de Vida , Resultado do Tratamento
19.
Altern Ther Health Med ; 13(5): 26-35, 2007.
Artigo em Inglês | MEDLINE | ID: mdl-17900039

RESUMO

CONTEXT: Chronic, nonspecific back pain is a ubiquitous problem that has frustrated both physicians and patients. Some have suggested that it is time for a "paradigm shift" in treating it. One of them is John Sarno, MD, of New York University's Rusk Institute of Rehabilitation, who has argued for this in 4 books and several journal publications. We believe that a mind-body approach is more effective and involves much less risk and expense than conventional approaches in appropriately diagnosed cases. OBJECTIVE: To determine if a mind-body treatment program addressing a presumed psychological etiology of persistent back pain merits further research. DESIGN: Case series outcome study. SETTING: Single physician's office in metropolitan Los Angeles. PATIENTS: Fifty-one patients with chronic back pain, diagnosed with tension myositis syndrome, a diagnosis for "functional" back pain and treated in the principal investigator's office in 2002 and 2003. INTERVENTIONS: A program of office visits, written educational materials, a structured workbook (guided journal), educational audio CDs, and, in some cases, individual psychotherapy. MAIN OUTCOME MEASURES: Pain intensity (visual analog scale scores), quality of life (RAND SF-12), medication usage, and activity level (questionnaires). Follow-up was at least 3 to 12 months after treatment. RESULTS: Mean VAS scores decreased 52% for "average" pain (P < .0001), 35% for "worst" pain (P < .0001), and 65% for "least" pain (P < .0001). SF-12 Physical Health scores rose >9 units (P = .005). Medication usage decreased (P = .0008). Activity levels increased (P =.03). Participants aged >47 years and in pain for >3 years benefited most.


Assuntos
Dor nas Costas/terapia , Saúde Mental , Relações Metafísicas Mente-Corpo , Miosite/terapia , Espiritualidade , Adulto , Idoso , Dor nas Costas/diagnóstico , Dor nas Costas/etiologia , Dor nas Costas/psicologia , California , Doença Crônica , Feminino , Humanos , Modelos Logísticos , Masculino , Pessoa de Meia-Idade , Miosite/complicações , Miosite/diagnóstico , Miosite/psicologia , Projetos de Pesquisa , Autocuidado , Síndrome , Resultado do Tratamento
20.
J Artif Organs ; 9(4): 203-8, 2006.
Artigo em Inglês | MEDLINE | ID: mdl-17171397

RESUMO

Most heart transplant candidates are equipped with left ventricular assist devices (LVADs). LVAD therapy is associated with characteristic psychiatric and psychosocial problems. To investigate the mental states of heart transplant candidates, psychiatric diagnosis, psychological or behavioral problems, and the need for treatment were evaluated around the time of registration to the waiting list and during follow-up. Saitama Medical University Hospital has been designated a hospital for heart transplantation since October 2002. The subjects were 14 heart transplant candidates (9 male candidates and 5 female candidates, mean age 29 years) at the hospital from September 1997 to October 2005. These 14 candidates were equipped with LVADs. The waiting periods on LVAD support were from 119 days to 1028 days, and the average waiting period was 313 days. Six candidates among the 14 had more than one DSM-IV diagnosis. Seven candidates were diagnosed with adjustment disorder, which was the most frequent diagnosis. Three candidates had depressive disorder, one had psychotic disorder, and one had dissociative disorder. Three candidates had acute cognitive dysfunction (delirium) due to their general medical condition. All three had other disorders with mainly psychological elements. Nine candidates (64%) were diagnosed with disorders with mainly psychological elements. Antipsychotics were used for the candidates in psychotic states and with delirium, and there was a need for crisis intervention. Antidepressants and antianxiety drugs were used for the candidates with depressive disorder; they needed intensive observation. Four candidates (28%) needed some attention and some antianxiety drugs or hypnotics. Psychiatric interventions were not necessary in five candidates (36%).


Assuntos
Cardiomiopatia Dilatada/terapia , Transplante de Coração/psicologia , Coração Auxiliar/psicologia , Transtornos Mentais/epidemiologia , Miosite/terapia , Transtornos de Adaptação/epidemiologia , Adolescente , Adulto , Cardiomiopatia Dilatada/epidemiologia , Cardiomiopatia Dilatada/psicologia , Criança , Comorbidade , Delírio/epidemiologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Miosite/epidemiologia , Miosite/psicologia , Fatores de Tempo
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