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1.
BMC Oral Health ; 23(1): 223, 2023 04 18.
Artigo em Inglês | MEDLINE | ID: mdl-37072843

RESUMO

BACKGROUND: Patients with advanced cancer are prone to develop different opportunistic oral infection due to anti-cancer treatment or the malignancies themselves. Studies of oral fungal samples show an increased prevalence of non-Candida albicans species in mixed oral infections with Candida albicans. Non-C. albicans and C. albicans are associated with varying degrees of resistance to azoles, which may have implications for treatment. This study aimed to assess the diversity and antifungal susceptibility of Candida species detected in the oral cavity. METHODS: An observational study with microbiological analysis was conducted. Clinical fungal isolates were collected from patients in a hospice unit in 2014-2016. Isolates were re-grown on chromID® Candida plates in 2020. Single colony of each species was re-cultivated and prepared for biochemical identification with a VITEK2® system and verified by gene sequencing. Etest was performed on RPMI agar, and the antifungals fluconazole, amphotericin B, anidulafungin and nystatin were applied. RESULTS: Fifty-six isolates from 45 patients were identified. Seven different Candida species and one Saccharomyces species were detected. The results of biochemical identification were confirmed with sequencing analysis. Thirty-six patients had mono infection, and nine out of 45 patients had 2-3 different species detected. Of C. albicans strains, 39 out of 40 were susceptible to fluconazole. Two non-C. albicans species were resistant to fluconazole, one to amphotericin B and three to anidulafungin. CONCLUSION: C. albicans was the predominant species, with a high susceptibility to antifungal agents. Different Candida species occur in both mono and mixed infections. Identification and susceptibility testing may therefore lead to more effective treatment and may prevent the development of resistance among patients with advanced cancer. TRAIL REGISTRATION: The study Oral Health in Advanced Cancer was registered at ClinicalTrials.gov (#NCT02067572) in 20/02/2014.


Assuntos
Candidíase Bucal , Neoplasias , Humanos , Candidíase Bucal/microbiologia , Fluconazol/farmacologia , Fluconazol/uso terapêutico , Anfotericina B/farmacologia , Anfotericina B/uso terapêutico , Anidulafungina/farmacologia , Anidulafungina/uso terapêutico , Testes de Sensibilidade Microbiana , Antifúngicos/farmacologia , Antifúngicos/uso terapêutico , Candida , Candida albicans , Neoplasias/tratamento farmacológico , Farmacorresistência Fúngica
2.
Qual Life Res ; 31(3): 659-669, 2022 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-34350566

RESUMO

PURPOSE: Several guidelines for the use of patient-reported outcomes (PROs) in clinical studies have been published in the past decade. This review primarily aimed to compare the number and compliance with selected PRO-specific criteria for reporting of clinical studies in Europe using PROs published in 2008 and 2018. Secondarily, to describe the study designs, PRO instruments used, patient groups studied, and countries where the clinical studies were conducted. METHODS: A literature search was conducted in MEDLINE to identify eligible publications. To assess the number of publications, all abstracts were screened for eligibility by pairs of reviewers. Compliance with PRO-specific criteria and other key characteristics was assessed in a random sample of 150 eligible full-text publications from each year. Randomized controlled trials (RCTs) were assessed according to the full CONSORT-PRO checklist. RESULTS: The search identified 1692 publications in 2008 and 4290 in 2018. After screening of abstracts, 1240 from 2008 and 2869 from 2018 were clinical studies using PROs. By full-text review, the proportion of studies discussing PRO-specific limitations and implications was higher in 2018 than in 2008, but there were no differences in the other selected PRO-specific criteria. In 2018, a higher proportion of studies were longitudinal/cohort studies, included ≥ 300 patients, and used electronic administration of PRO than in 2008. The most common patient groups studied were those with cancer or diseases of the musculoskeletal system or connective tissue. CONCLUSION: The number of clinical studies from Europe using PROs was higher in 2018 than in 2008, but there was little difference in compliance with the PRO-specific criteria. The studies varied in terms of study design and PRO instruments used in both publication years.


Assuntos
Neoplasias , Qualidade de Vida , Europa (Continente) , Humanos , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida/psicologia , Projetos de Pesquisa
3.
Support Care Cancer ; 29(9): 4997-5007, 2021 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-33586003

RESUMO

BACKGROUND: Few clinical studies evaluate interventions to reduce oral discomfort among patients in palliative care. AIM: This study examines the efficacy of a Salvia officinalis (SO) based herbal mouth rinse compared to conventional normal saline (NS) in order to improve oral health. DESIGN: A block-randomized controlled trial. Data were collected before and after a 4-day intervention with either SO (n=44) or NS (n=44). Numerical rating scales (NRS, 0-10) and 12 items from the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire-Oral Health 17 (EORTC QLQ-OH17) measured patient-reported oral symptoms. An oral examination was performed before and after the intervention. SETTING/PARTICIPANTS: This study included adult patients with late-stage cancer in an inpatient hospice unit. RESULTS: Of the 88 patients included (mean age=63.9 years, SD=10.6), 73 (83%) completed the study. At baseline, 78% reported dry mouth on the EORTC QLQ-OH17, and 80% rated dry mouth ≥4 on the NRS. Total oral health scores based on the 12 EORTC QLQ-OH17 items improved similarly in both groups (p<0.001). However, dry mouth ratings on both the EORTC QLQ-OH17 (p=0.036) and NRS (p=0.045) improved more in the SO group than in the NS group. Plaque on the teeth improved in both the SO (p=0.008) and NS (p=0.018) groups, but plaque on the tongue and erythema only improved with NS. CONCLUSIONS: This study did not detect an overall significant difference between SO and NS. Both mouth rinses improved oral health parameters, indicating that systematic assessment and oral care may reduce oral discomfort. TRIAL REGISTRATION: NCT02067572.


Assuntos
Neoplasias , Salvia officinalis , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Antissépticos Bucais , Cuidados Paliativos , Qualidade de Vida , Inquéritos e Questionários , Chá
4.
Microb Ecol Health Dis ; 28(1): 1301725, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28572752

RESUMO

Objective: Alterations of gut microbiota composition or function may participate in the pathophysiology of several diseases. We aimed to explore the effect of chronic alcohol overconsumption on gut microbial metabolism, as assessed by evaluating 13C-D-xylose breath test results. Materials and methods: We investigated all 13C-D-xylose breath tests performed at Lovisenberg Diaconal Hospital during the years 2005 to 2011, using patient files for diagnosing the patients into one of three patient categories: alcohol overconsumption, coeliac disease and functional bowel disorder. In addition, a group of healthy controls was included. The time curves of 13CO2 excretion in breath samples were divided into two phases, evaluating small intestinal absorption (0-60 min) and colonic microbial metabolism (90-240 min), respectively. Results: A total of 719 patients underwent 13C-D-xylose breath testing during the inclusion period. Thirty-five had a history of alcohol overconsumption, 66 had coeliac disease, and 216 had a functional bowel disorder, while 44 healthy controls were included for comparison. The alcohol overconsumption group had similar small intestinal phase results as the group of patients with untreated coeliac disease. During the colonic phase, the group of patients with alcohol overconsumption differed from all the other groups in terms of 13C-xylose recovery, with significantly less 13CO2 excretion compared to the other groups. Conclusion: The results suggest that patients with a history of alcohol overconsumption suffer from both small intestinal malabsorption and impaired colonic microbial metabolism. The role of gut microbiota in chronic alcohol overconsumption should be investigated further.

5.
J Rheumatol ; 49(10): 1138-1145, 2022 10.
Artigo em Inglês | MEDLINE | ID: mdl-35569834

RESUMO

OBJECTIVE: To explore quality of life (QOL) using the individualized Patient Generated Index (PGI) in young adults who were diagnosed with juvenile idiopathic arthritis (JIA) in childhood, and to examine associations between PGI ratings and standardized health-related outcome measures. METHODS: Patients (N = 79, mean age 25.1 [SD 4.2] yrs, 72% female) completed the PGI and the standardized measures: Health Assessment Questionnaire-Disability Index, 12-item Short Form Health Survey (SF-12; physical and mental health-related QOL [HRQOL]), Brief Pain Inventory (pain severity and interference), 5-item Hopkins Symptom Checklist, and visual analog scale for fatigue. Information on morning stiffness, medications, and demographics was also collected. Patients were compared to 79 matched controls. RESULTS: The most frequently nominated areas of importance for patients' personally generated QOL (assessed by PGI) were physical activity (n = 38, 48%), work/school (n = 31, 39%), fatigue (n = 29, 37%) and self-image (n = 26, 33%). Nomination of physical activity was associated with older age, morning stiffness, and more pain interference. Nomination of fatigue was associated with current use of disease-modifying antirheumatic drugs, whereas nomination of self-image was associated with polyarticular course JIA and pain interference. Nomination of work/school was not associated with other factors. Higher PGI scores (indicating better QOL) correlated positively with all SF-12 subscales except role emotional, and negatively with disability, pain severity, pain interference, and morning stiffness. Compared to controls, patients had more pain, poorer physical HRQOL, and less participation in full-time work or school. CONCLUSION: Physical activity, work/school, fatigue, and self-image were frequently nominated areas affecting QOL in young adults with JIA. The PGI included aspects of QOL not covered in standardized measures.


Assuntos
Antirreumáticos , Artrite Juvenil , Adulto Jovem , Humanos , Feminino , Adulto , Masculino , Qualidade de Vida , Artrite Juvenil/complicações , Fadiga/complicações , Dor/complicações
6.
J Alzheimers Dis ; 86(3): 1301-1314, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35180126

RESUMO

BACKGROUND: Vitamin D insufficiency has been suggested as a dementia risk factor. OBJECTIVE: In this cross-sectional, explorative study we investigated whether levels of vitamin D in cerebrospinal fluid (CSF) are lower in patients with positive biomarkers of Alzheimer's disease (AD) compared to cognitively healthy controls and whether polymorphisms of the vitamin D receptor (VDR) gene, FokI, BsmI, ApaI, and TaqI, are associated with levels of vitamin D in CSF and cognition. METHODS: We included 100 patients≥65 years assessed for cognitive impairment and 76 cognitively healthy controls. Levels of 25-hydroxyvitamin D (25(OH)D) in both serum and CSF, and VDR polymorphisms were analyzed. RESULTS: The mean level of 25(OH)D in serum was 78.6 (SD 28.9) nmol/l. While serum levels of 25(OH)D were not significantly different between the groups, CSF levels of 25(OH)D were significantly lower in patients with positive AD core biomarkers (p = 0.001) compared to patients without such biomarkers. Individuals with the BsmI major homozygote genotype had significantly lower results on a 10-word delayed recall test (p = 0.044) and verbal fluency test (p = 0.013), and individuals with the TaqI major homozygote genotype had significantly lower results on a verbal fluency test (p = 0.030) compared to individuals with the corresponding minor homozygote genotype. CONCLUSION: Patients with positive AD core biomarkers have low CSF levels of 25(OH)D, despite sufficient serum levels. CSF levels of 25(OH)D do not seem to be affected by any of the four VDR gene polymorphisms. TaqI and BsmI major homozygote genotypes might be at increased risk for development of cognitive decline.


Assuntos
Doença de Alzheimer , Vitamina D , Doença de Alzheimer/sangue , Doença de Alzheimer/líquido cefalorraquidiano , Doença de Alzheimer/genética , Biomarcadores/sangue , Biomarcadores/líquido cefalorraquidiano , Estudos de Casos e Controles , Estudos Transversais , Predisposição Genética para Doença , Genótipo , Humanos , Polimorfismo de Nucleotídeo Único , Vitamina D/sangue , Vitamina D/líquido cefalorraquidiano , Vitaminas/sangue , Vitaminas/líquido cefalorraquidiano
7.
Arthritis Care Res (Hoboken) ; 73(2): 221-231, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-31758669

RESUMO

OBJECTIVE: To examine medication satisfaction and adherence and their relationships to disease variables and health-related quality of life (HRQoL) in adults with juvenile idiopathic arthritis (JIA). METHODS: Patients (n = 96, mean age 25 years, 67% female) completed questionnaires about their health status 19 years after disease onset. Patients receiving biologic disease-modifying antirheumatic drugs (bDMARDs) or methotrexate (MTX) were assessed with the 8-item Morisky Medication Adherence Scale (MMAS-8) and the Treatment Satisfaction Questionnaire for Medication (TSQM), including dimensions of effectiveness, side effects, convenience, and global satisfaction. RESULTS: DMARDs were received by 52 patients (54%) (mean age 25 years, 75% female), of which 28 received MTX and 37 received bDMARDs. Patients receiving combination therapy of MTX and bDMARDs (n = 15) reported higher satisfaction with bDMARDs than MTX in the dimensions of side effects and global satisfaction (mean ± SD 92.9 ± 15.5 versus 56.2 ± 30.9, and mean ± SD 67.6 ± 19.8 versus 47.1 ± 21.7; P < 0.001 and P = 0.016, respectively). Patients receiving either bDMARDs (n = 22) or MTX (n = 13) reported higher satisfaction with bDMARDs than MTX for the dimensions of effectiveness and global satisfaction (mean ± SD 78.7 ± 15.4 versus 60.2 ± 19.9, and mean ± SD 73.6 ± 17.7 versus 52.3 ± 23.9; P = 0.004 and P = 0.005, respectively). Nearly one-half of patients (46%) reported low adherence (MMAS-8 score <6) and 25% high adherence (MMAS-8 score = 8). Higher levels of pain, psychological distress, more active joints, and current MTX use were the strongest correlates of lower medication satisfaction. Perceived medication effectiveness and global satisfaction correlated positively with physical and mental HRQoL. CONCLUSION: Patients with JIA were more satisfied with bDMARDs than MTX, and 46% reported low adherence. Higher medication satisfaction was associated with better HRQoL.


Assuntos
Antirreumáticos/uso terapêutico , Artrite Juvenil/tratamento farmacológico , Imunossupressores/uso terapêutico , Adesão à Medicação , Metotrexato/uso terapêutico , Satisfação do Paciente , Adulto , Antirreumáticos/efeitos adversos , Artrite Juvenil/diagnóstico , Quimioterapia Combinada , Feminino , Nível de Saúde , Humanos , Imunossupressores/efeitos adversos , Estudos Longitudinais , Masculino , Metotrexato/efeitos adversos , Estudos Prospectivos , Qualidade de Vida , Resultado do Tratamento , Adulto Jovem
8.
J Rheumatol ; 46(10): 1335-1344, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-30877211

RESUMO

OBJECTIVE: To describe the longitudinal health status from childhood to adulthood in patients with juvenile idiopathic arthritis (JIA), compare outcomes after 19 years with those of controls, and identify early predictors of physical functioning, pain, and physical health-related quality of life (HRQOL). METHODS: Between 1995-2003, 96 patients with JIA (mean 6.1 ± 4.0 yrs, 67% female) were assessed within 18 months of diagnosis and every 6 months for the next 3 years with measures of JIA disease activity, physical functioning, pain, fatigue, and well-being. They were reassessed a mean of 18.9 ± 1.5 years later (mean age 25.1 ± 4.2 yrs) with measures of physical disability [Health Assessment Questionnaire-Disability Index (HAQ-DI)], pain, fatigue, well-being (visual analog scale), and physical and mental health-related quality of life (HRQOL; Medical Outcomes Study 12-item Short Form Health Survey, version 2). RESULTS: During the first 3 years, physical disability improved (p < 0.001) and the proportion of patients reporting best possible well-being increased (p = 0.013), while pain and fatigue did not change. At 3- and 19-year followups, patients had similar levels of physical disability, well-being, and pain, but fatigue increased (p = 0.016) and the number of patients with HAQ-DI = 0 decreased (p = 0.001). After 19 years, patients had worse pain and physical HRQOL than controls (p < 0.001). Pain, active joints, and physical disability during the first 3 years were associated with more disability and pain and worse physical HRQOL after 19 years (p < 0.001-0.047). CONCLUSION: Patients with JIA reported similar physical functioning, well-being, and pain at 3- and 19-year followups, but more fatigue after 19 years. Patients also had worse health status than controls after 19 years. Pain, active joints, and physical disability were early predictors of unfavorable outcomes.


Assuntos
Artrite Juvenil/diagnóstico , Artrite Juvenil/fisiopatologia , Nível de Saúde , Adulto , Antirreumáticos/uso terapêutico , Artrite Juvenil/tratamento farmacológico , Criança , Pré-Escolar , Avaliação da Deficiência , Fadiga , Feminino , Seguimentos , Inquéritos Epidemiológicos , Humanos , Estudos Longitudinais , Masculino , Dor , Prognóstico , Estudos Prospectivos , Qualidade de Vida , Índice de Gravidade de Doença , Escala Visual Analógica , Adulto Jovem
9.
World J Gastroenterol ; 24(35): 4069-4076, 2018 Sep 21.
Artigo em Inglês | MEDLINE | ID: mdl-30254411

RESUMO

AIM: To evaluate the use of chromoendoscopy for surveillance of ulcerative colitis in a real-life community hospital setting. METHODS: Patients with extensive ulcerative colitis, having disease duration of more than 8 years and who presented between the years of 1999 to 2013, were offered enrolment in this single cohort prospective study. All participants underwent standard bowel preparation with sodium phosphate and chromoendoscopy. Two expert endoscopists, novice to chromoendoscopy, evaluated each segment of the colon with standard-definition colonoscopes after spray application of 0.4% indigo carmine. All observed lesions were recorded and evaluated before being removed and/or biopsied. In addition, nontargeted biopsies were taken from each segment of the colon. The dysplasia detection rate and dysplasia detection yield were ascertained. RESULTS: A total of 21 neoplastic lesions (2 carcinomas, 4 of high-grade dysplasia and 15 of low-grade dysplasia) and 27 nondysplastic lesions were detected in 16 of the total 67 patients (70% male; median disease duration: 17 years; median age at diagnosis: 25 years; 92% aminosalicylate-treated). The dysplasia detection rate was 10.5% (7/67 patients). The dysplasia detection yield was 20.8% (10/48) for targeted biopsies and 3.5% (11/318) for nontargeted biopsies. The sensitivity and specificity for the macroscopic evaluation of neoplasia using chromoendoscopy were 48% [95% confidence interval (CI): 26%-70%] and 96% (95%CI: 93%-98%), respectively. The positive predictive and negative predictive values were 42% (95%CI: 27%-59%) and 97% (95%CI: 95%-98%), respectively. A total of 19/21 dysplastic lesions were detected in mucosa with histologic inflammation. CONCLUSION: Chromoendoscopy seems to be of value for dysplasia surveillance of ulcerative colitis in a community hospital setting. The yield of non-targeted biopsies is negligible.


Assuntos
Colite Ulcerativa/complicações , Colo/patologia , Neoplasias Colorretais/diagnóstico por imagem , Detecção Precoce de Câncer/métodos , Mucosa Intestinal/patologia , Adulto , Idoso , Biópsia , Colite Ulcerativa/diagnóstico por imagem , Colite Ulcerativa/patologia , Colo/diagnóstico por imagem , Colonoscopia/métodos , Neoplasias Colorretais/epidemiologia , Neoplasias Colorretais/etiologia , Neoplasias Colorretais/patologia , Corantes/administração & dosagem , Estudos de Viabilidade , Feminino , Humanos , Hiperplasia/diagnóstico por imagem , Hiperplasia/etiologia , Hiperplasia/patologia , Índigo Carmim/administração & dosagem , Mucosa Intestinal/diagnóstico por imagem , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Sensibilidade e Especificidade
10.
Arthritis Care Res (Hoboken) ; 70(5): 741-749, 2018 05.
Artigo em Inglês | MEDLINE | ID: mdl-28732134

RESUMO

OBJECTIVE: To describe physical functioning, pain, and health-related quality of life (HRQoL) in adults with juvenile idiopathic arthritis (JIA), investigate changes over time, and identify predictors of poorer HRQoL after 30 years of disease. METHODS: Patients (n = 176) clinically examined after 15 years were reassessed using the Health Assessment Questionnaire disability index (HAQ DI), the visual analog scale pain subscale (VAS pain), and the Medical Outcomes Study Short Form 36 (SF-36) after 23 years and 30 years. Patients with signs of active disease after a minimum of 15 years were clinically examined again at 30 years. Patients were compared to matched controls. RESULTS: At the 30-year followup, 82 patients (47%) had HAQ DI scores >0, and the median VAS pain score in patients was 0.6 (range 0-10). Patients had lower SF-36 physical component summary (PCS) scores compared with controls (P < 0.001), and this was evident for patients both with and without clinical remission (P ≤ 0.01). No group differences were found in SF-36 mental component summary scores. Patients also scored worse than controls on all SF-36 subscales (P ≤ 0.01) except mental health. PCS scores worsened significantly between the 15- and 30-year followup time points (P = 0.001). Worse HAQ DI, VAS pain, and patient's global assessment of well-being scores, and receiving disability/social living allowance at 30 years, were correlated with lower PCS scores. Worse HAQ DI, patient's global assessment of well-being, and VAS fatigue scores at 15-year followup predicted lower PCS scores at 30-year followup. CONCLUSION: JIA had a detrimental effect on physical HRQoL as measured by the PCS of the SF-36. The strongest correlates were physical disability, pain, fatigue, well-being, and receiving disability/social living allowance.


Assuntos
Artrite Juvenil/fisiopatologia , Adulto , Artrite Juvenil/complicações , Artrite Juvenil/psicologia , Feminino , Seguimentos , Humanos , Estudos Longitudinais , Masculino , Dor/etiologia , Qualidade de Vida
11.
J Rheumatol ; 44(6): 827-834, 2017 06.
Artigo em Inglês | MEDLINE | ID: mdl-28365577

RESUMO

OBJECTIVE: To compare submaximal exercise capacity in patients with juvenile dermatomyositis (JDM) with controls, and analyze contributions of muscle, heart, and lung impairment in patients. METHODS: Fifty-nine patients with JDM, with a mean 16.9 years after symptom onset, and 59 sex- and age-matched controls completed a 6-min walk test (6MWT) and a timed up and go (TUG) test. Muscle function, disease activity/damage, and health-related quality of life (HRQOL) were assessed by validated tools; heart function by echocardiography and electrocardiography; and lung function by spirometry, DLCO, and body plethysmography. A thoracic high-resolution computed tomography (HRCT) scan and magnetic resonance imaging of the thighs were completed in patients. RESULTS: The 6MWT distance (6MWD) was 592 ± 81 m in patients versus 649 ± 79 m in controls (p < 0.001), and 563 ± 75 m in active versus 622 ± 76 m in inactive JDM (p = 0.004). The TUG time was 13.1 ± 2.1 s in patients versus 12.3 ± 2.0 s in controls (p = 0.034), and 13.7 ± 2.2 s in active versus 12.5 ± 1.8 s in inactive JDM (p = 0.028). No statistically significant difference was found between inactive JDM and controls in either test. In patients, the Childhood Myositis Assessment Score influenced the 6MWD and TUG time the most, followed by a low DLCO and HRCT pathology in the 6MWT and forced vital capacity in the TUG test. Medical Outcomes Study Short Form-36 physical component summary correlated strongly with both tests. CONCLUSION: Submaximal exercise capacity was reduced in patients with JDM, particularly those with active disease. This reduction was associated with muscle and lung dysfunction and poorer HRQOL.


Assuntos
Dermatomiosite/fisiopatologia , Tolerância ao Exercício/fisiologia , Exercício Físico/fisiologia , Coração/fisiopatologia , Pulmão/fisiopatologia , Músculo Esquelético/fisiopatologia , Qualidade de Vida , Adolescente , Adulto , Criança , Pré-Escolar , Dermatomiosite/diagnóstico por imagem , Ecocardiografia , Eletrocardiografia , Teste de Esforço , Feminino , Nível de Saúde , Coração/diagnóstico por imagem , Humanos , Pulmão/diagnóstico por imagem , Imageamento por Ressonância Magnética , Masculino , Músculo Esquelético/diagnóstico por imagem , Tomografia Computadorizada por Raios X , Capacidade Vital , Adulto Jovem
12.
Arthritis Care Res (Hoboken) ; 64(7): 1020-7, 2012 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-22328537

RESUMO

OBJECTIVE: To compare quality of life in adults diagnosed with juvenile dermatomyositis (DM) with that of matched controls, and to analyze the association with other disease parameters in patients. METHODS: Thirty-nine patients with juvenile DM (ages ≥ 18 years) were clinically examined and compared with 39 age- and sex-matched controls. Global and health-related quality of life (HRQOL) were assessed by the Norwegian version of the Quality of Life Scale (QOLS-N) and the Short Form 36 (SF-36), respectively. For patients, disease parameters were assessed by the Disease Activity Score (DAS), Health Assessment Questionnaire (HAQ), and Myositis Damage Index (MDI). RESULTS: Compared to the controls, patients with juvenile DM assessed a median of 22.2 years (range 1.8-36.1 years) after disease onset had reduced HRQOL in general health (P = 0.009) measured by the SF-36. In patients, a moderate correlation was found between the physical component summary (PCS) score and the DAS (r(s) = -0.422) and MDI (r(s) = -0.381), and a strong correlation was found between the PCS score and the HAQ (r(s) = -0.516). There were no differences between patients and controls in the SF-36 mental component summary scores. Patients and controls had similar total scores of the QOLS-N, but differences existed within certain items. CONCLUSION: Adult patients with juvenile DM had, compared to controls, reduced HRQOL in general health measured by the SF-36, but not in the other subscales of the SF-36 or in global quality of life measured by the QOLS-N. An association was found between disease parameters and reduced HRQOL in the physical domains.


Assuntos
Dermatomiosite/fisiopatologia , Dermatomiosite/psicologia , Avaliação da Deficiência , Qualidade de Vida/psicologia , Índice de Gravidade de Doença , Adolescente , Adulto , Estudos de Casos e Controles , Criança , Pré-Escolar , Feminino , Nível de Saúde , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Noruega , Perfil de Impacto da Doença , Inquéritos e Questionários , Adulto Jovem
13.
Arthritis Care Res (Hoboken) ; 62(8): 1103-11, 2010 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-20506141

RESUMO

OBJECTIVE: To compare muscle strength, physical health, and HLA-DRB1 allele carriage frequencies in patients with longstanding juvenile dermatomyositis (DM) with that of controls, and to determine the presence of and risk factors for muscle weakness and magnetic resonance imaging (MRI)-detected muscle damage in juvenile DM patients. METHODS: Fifty-nine patients with juvenile DM examined a median of 16.8 years (range 2.0-38.1 years) after disease onset were compared with 59 age- and sex-matched controls. Muscle strength/endurance was measured by manual muscle testing (MMT) and the Childhood Myositis Assessment Scale (CMAS); health status was measured by the Short Form 36. HLA-DRB1 alleles were determined by sequencing in patients and 898 healthy controls. In patients, disease activity/damage was measured by the Disease Activity Score (DAS), Myositis Damage Index (MDI), Health Assessment Questionnaire/Childhood Health Assessment Questionnaire, and MRI scans of the thigh muscles. Early disease characteristics were obtained by chart review. RESULTS: Patients had lower muscle strength/endurance (P < 0.001 for both) and physical health (P = 0.014) and increased HLA-DRB1*0301 (P = 0.01) and DRB1*1401 (P = 0.003) compared with controls. In patients, persistent muscle weakness was found in 42% with MMT (score <78) and in 31% with the CMAS (score <48), whereas MRI-detected muscle damage was found in 52%. Muscle weakness and MRI-detected muscle damage were predicted by MDI muscle damage and a high DAS 1 year postdiagnosis. CONCLUSION: A median of 16.8 years after disease onset, juvenile DM patients were weaker than the controls; muscle weakness/reduced endurance was found in 31-42% of patients and MRI-detected muscular damage was found in 52% of patients. The outcomes were predicted by high disease activity and muscle damage present 1 year postdiagnosis.


Assuntos
Dermatomiosite/diagnóstico , Nível de Saúde , Miosite/diagnóstico , Estudos de Casos e Controles , Criança , Pré-Escolar , Estudos de Coortes , Suscetibilidade a Doenças , Feminino , Antígenos HLA-DR/genética , Cadeias HLA-DRB1 , Humanos , Masculino , Atividade Motora , Força Muscular , Debilidade Muscular/complicações , Músculo Esquelético/patologia , Músculo Esquelético/fisiopatologia , Fatores de Risco , Pele/patologia , Resultado do Tratamento
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