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1.
Clin Rheumatol ; 43(7): 2295-2305, 2024 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-38797812

RESUMO

OBJECTIVES: The objective of this study is to investigate extraarticular manifestations (EAMs) in patients with juvenile idiopathic arthritis (JIA) and assess their impact on health-related quality of life (HRQoL) among these patients. METHODS: This cross-sectional analytic study was carried out on 117 patients with JIA. EAMs were identified clinically by history and examination. Sicca symptoms, peripheral neuropathy, enthesitis, and skin lesions were picked up during clinical examination. Pulmonary involvement was evaluated by high-resolution CT chest. Patients were assessed by abdominal ultrasonography to assess the size of liver and spleen. Atlantoaxial subluxation was evaluated by cervical spine x-rays. Patients were evaluated by Pediatric Quality of Life Inventory-4 (PedsQL-4) and PedsQL-3 arthritis module. RESULTS: The median age of patients was 14 years with a median disease duration 4 years, 82.9% were females. Of the studied 117 JIA patients, 85 patients (72.6%) had at least one EAM. Persistent fatigue (51.3%) was the most prevalent EAM, followed by recurrent skin rash (16.2%), enthesitis (15.4%), recurrent fever (13.7%), and uveitis (12%). Patients with EAMs scored significantly lower in physical functioning (p = 0.001), emotional functioning (p < 0.001), social functioning (p = 0.005), and school functioning (p = 0.001). Regarding PedsQL arthritis module, patients with EAM had also significantly lower scores than did patients without EAM on the domains of pain and hurt (p < 0.001), daily activities (p = 0.008), and worry (p = 0.001). RESULTS: EAMs are prevalent among JIA patients and have a negative impact on their HRQoL. So, early identification and treatment are highly recommended. Key Points • A large percentage of JIA patients experienced at least one extraarticular manifestation (EAM). • Persistent fatigue and recurrent skin rash are the most prevalent EAMs in JIA patients. • JIA patients with EAMs have worse scores in almost all domains of HRQoL.


Assuntos
Artrite Juvenil , Qualidade de Vida , Humanos , Artrite Juvenil/psicologia , Artrite Juvenil/complicações , Artrite Juvenil/fisiopatologia , Feminino , Masculino , Estudos Transversais , Adolescente , Criança , Fadiga/etiologia , Uveíte/psicologia , Entesopatia/diagnóstico por imagem , Exantema
2.
Arq Bras Oftalmol ; 87(4): e2023, 2024.
Artigo em Inglês | MEDLINE | ID: mdl-38656022

RESUMO

PURPOSE: To assess the quality of life in patients diagnosed as having tuberculous uveitis and its association with sociodemographic, clinical, and psychosocial aspects. METHOD: By conducting standardized interviews, clinical and demographic data were collected using a measure developed in this study. This measure was applied in addition to other measures, namely SF-12, Hospital Anxiety and Depression Scale, and NEI-VFQ-39, which were used to assess health-related quality of life, anxiety and depression symptoms, and visual functioning. RESULTS: The study included 34 patients [mean age: 46.5 ± 15.1 years, female patients: 21 (61.8%)]. The mean of the VFQ-39 score was 74.5 ± 16.6 and that of SF-12 physical and mental component scores were 45.8 ± 10.1 and 51.6 ± 7.5, respectively, for the health-related quality of life. Anxiety symptoms were the most prevalent compared with depression symptoms and were found in 35.3% of the participants. CONCLUSION: Tuberculous uveitis affects several scales of quality of life, thereby affecting a population economically active with a social, psychological, and economic burden.


Assuntos
Ansiedade , Depressão , Qualidade de Vida , Fatores Socioeconômicos , Tuberculose Ocular , Uveíte , Humanos , Feminino , Masculino , Pessoa de Meia-Idade , Uveíte/psicologia , Uveíte/epidemiologia , Adulto , Tuberculose Ocular/psicologia , Tuberculose Ocular/epidemiologia , Tuberculose Ocular/diagnóstico , Ansiedade/epidemiologia , Depressão/epidemiologia , Depressão/psicologia , Inquéritos e Questionários , Estudos Transversais , Brasil/epidemiologia , Adulto Jovem , Idoso
3.
Arthritis Care Res (Hoboken) ; 74(3): 355-363, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-33085849

RESUMO

OBJECTIVE: The Effects of Youngsters' Eyesight on Quality of Life (EYE-Q) questionnaire measures vision-related functioning (VRF) and vision-related quality of life (VRQoL) in children with uveitis. Our aim was to revise the alpha version of the EYE-Q to refine VRF and VRQoL subscales and to assess the validity of the EYE-Q. METHODS: Children with juvenile idiopathic arthritis (JIA), JIA-associated uveitis, and other noninfectious uveitis were enrolled. Patients and parents completed the EYE-Q, Pediatric Quality of Life Inventory (overall quality of life), and Childhood Health Assessment Questionnaire (physical functioning). The development site completed the alpha version of the EYE-Q, and the composite sites completed the beta version. We compared item-subscale correlations, internal consistency, and construct and discriminant validity among the different versions. RESULTS: Of the 644 patients enrolled, 61.6% completed the alpha version, and 38.4% the beta version of the EYE-Q. Mean ± SD patient age was 11.1 ± 4.2 years, and 70% were female. Fewer White patients (73.5%) completed the alpha version compared to the beta version (86.2%; P < 0.001). With the exception of patient-reported VRF, both versions had similar item-subscale correlations. Version comparisons on scale internal consistencies indicated significant differences for parent- and patient-reported VRF, but each scale had a Cronbach's α of >0.80 beta. When data were combined, the EYE-Q showed significant differences between JIA-only and uveitis patients on all parent and patient scores, except for patient-reported VRF. CONCLUSION: The EYE-Q appears to be a valid measure of VRF and VRQoL in pediatric uveitis. Our results suggest it may be used as an outcome measure in multicenter pediatric uveitis studies.


Assuntos
Qualidade de Vida , Inquéritos e Questionários/normas , Uveíte/psicologia , Adolescente , Artrite Juvenil/complicações , Criança , Feminino , Humanos , Masculino , Reprodutibilidade dos Testes , Uveíte/etiologia
4.
Am J Trop Med Hyg ; 105(6): 1563-1568, 2021 09 27.
Artigo em Inglês | MEDLINE | ID: mdl-34583332

RESUMO

Visible signs of disease can evoke stigma while stigma contributes to depression and mental illness, sometimes manifesting as somatic symptoms. We assessed these hypotheses among Ebola virus disease (EVD) survivors, some of whom experienced clinical sequelae. Ebola virus disease survivors in Liberia were enrolled in an observational cohort study starting in June 2015 with visits every 6 months. At baseline and 18 months later, a seven-item index of EVD-related stigma was administered. Clinical findings (self-reported symptoms and abnormal findings) were obtained at each visit. We applied the generalized estimating equation method to assess the bidirectional concurrent and lagged associations between clinical findings and stigma, adjusting for age, gender, educational level, referral to medical care, and HIV serostatus as confounders. When assessing the contribution of stigma to later clinical findings, we restricted clinical findings to five that were also considered somatic symptoms. Data were obtained from 859 EVD survivors. In concurrent longitudinal analyses, each additional clinical finding increased the adjusted odds of stigma by 18% (95% CI: 1.11, 1.25), particularly palpitations, muscle pain, joint pain, urinary frequency, and memory loss. In lagged associations, memory loss (adjusted odds ratio [AOR]: 4.6; 95% CI: 1.73, 12.36) and anorexia (AOR: 4.17; 95% CI: 1.82, 9.53) were associated with later stigma, but stigma was not significantly associated with later clinical findings. Stigma was associated with select symptoms, not abnormal objective findings. Lagged associations between symptoms and later stigma substantiate the possibility of a pathway related to visible symptoms identified by community members and leading to fear of contagion.


Assuntos
Doença pelo Vírus Ebola/psicologia , Estigma Social , Adolescente , Adulto , Estudos de Coortes , Escolaridade , Feminino , Infecções por HIV/complicações , Humanos , Masculino , Pessoa de Meia-Idade , Uveíte/psicologia , Adulto Jovem
5.
Gac Med Mex ; 157(2): 140-146, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34270526

RESUMO

OBJECTIVE: To determine the psychosocial and economic impact suffered by patients diagnosed with uveitis in Mexico. METHODS: Survey in uveitis-diagnosed patients. Demographic data and socioeconomic level were recorded. Symptoms, time to diagnosis, type of treatment, behavior, attitudes and feelings towards the disease were identified. RESULTS: One hundred surveys were conducted in patients with uveitis, who had a mean age of 45 ± 17.08 years, and socioeconomic level ≤ D; 54 were females. Diagnostic delay was 1.87 ± 2.73 years. Annually, patients attend 2.1 ± 2.14 appointments per month, and are admitted once to the emergency department and remain hospitalized for 3.7 days. Patients use systemic treatment with steroidal anti-inflammatory drugs (53 %), immunosuppressant agents (31 %), biological therapy (7 %), topical treatment with lubricants (44 %) or steroids (26 %) and undergo surgery (39 %). Observed comorbidities include hypertension, diabetes mellitus, rheumatoid arthritis (18 %), Sjögren's syndrome, systemic lupus erythematosus, and nonspecific chronic ulcerative colitis. Complications: visual impairment, cataracts and blindness. Uveitis affects their life in 83 % of cases, in 41 % does it daily, and 49 % need care from another person. Seventy-nine percent receive private care and 43 % have social security, with $ 3,590 ± $ 2,730.65 pesos being spent monthly on medicines, transportation, medical appointments and studies. Annually, work absenteeism is 8.5 ± 14.56 days, plus 7.0 days of disability or hospitalization; 51% refer lack of support to learn about the disease. CONCLUSIONS: This is the first national study to portray the condition of patients with uveitis and the shortcomings they go through, including the economic and biopsychosocial fields.


OBJETIVO: Conocer el impacto psicosocial y económico quede la uveítis en México. MÉTODOS: Encuesta en pacientes diagnosticados con uveítis. Se registraron datos demográficos y nivel socioeconómico. Se identificaron síntomas, tiempo al diagnóstico, tratamiento, comportamiento, actitudes y sentimientos ante la enfermedad. RESULTADOS: Se realizaron 100 encuestas a pacientes con uveítis, con edad media de 45 ± 17.08 años, nivel socioeconómico ≤ D; 54 eran mujeres. El diagnóstico se realizó al 1.87 ± 2.73 años. Acuden anualmente a cita 2.1 ± 2.14 mes, más de 1 a urgencias y son hospitalizados 3.7 días. Utilizan tratamiento sistémico con antiinflamatorios esteroideos (53 %), inmunosupresor (31 %), terapia biológica (7 %), tratamiento tópico con lubricantes (44 %), esteroides (26 %) y cirugías (39 %). Comorbilidades observadas: hipertensión arterial, diabetes mellitus, artritis reumatoide (18 %), síndrome de Sjögren, lupus y colitis ulcerativa crónica inespecífica. Complicaciones: deterioro visual, cataratas y ceguera. La uveítis afecta su vida en el 83 % de los casos, en el 41 % a diario y el 49 % necesitan cuidados de otra persona. El 79 % reciben atención privada, el 43 % cuenta con seguridad social, gastando mensualmente $3,590 ± $2,730.65 pesos en medicamentos, transporte, consulta médicas y estudios. Anualmente con ausentismo laboral de 8.5 ± 14.56 días, más 7.0 días de incapacidad u hospitalización. El 51 % refieren falta de apoyo para conocer la enfermedad. CONCLUSIONES: Se trata del primer estudio nacional que escenifica la condición de los pacientes con uveítis y las insuficiencias por las que atraviesan, incluyendo el ámbito económico y biopsicosocial.


Assuntos
Uveíte/economia , Uveíte/psicologia , Atividades Cotidianas , Adulto , Comorbidade , Efeitos Psicossociais da Doença , Diagnóstico Tardio , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Hospitalização , Humanos , Tempo de Internação , Masculino , México , Pessoa de Meia-Idade , Fatores Socioeconômicos , Fatores de Tempo , Uveíte/diagnóstico , Uveíte/terapia
6.
Gac. méd. Méx ; 157(2): 147-153, mar.-abr. 2021. tab
Artigo em Espanhol | LILACS | ID: biblio-1279094

RESUMO

Resumen Objetivo: Conocer el impacto psicosocial y económico quede la uveítis en México. Métodos: Encuesta en pacientes diagnosticados con uveítis. Se registraron datos demográficos y nivel socioeconómico. Se identificaron síntomas, tiempo al diagnóstico, tratamiento, comportamiento, actitudes y sentimientos ante la enfermedad. Resultados: Se realizaron 100 encuestas a pacientes con uveítis, con edad media de 45 ± 17.08 años, nivel socioeconómico ≤ D; 54 eran mujeres. El diagnóstico se realizó al 1.87 ± 2.73 años. Acuden anualmente a cita 2.1 ± 2.14 mes, más de 1 a urgencias y son hospitalizados 3.7 días. Utilizan tratamiento sistémico con antiinflamatorios esteroideos (53 %), inmunosupresor (31 %), terapia biológica (7 %), tratamiento tópico con lubricantes (44 %), esteroides (26 %) y cirugías (39 %). Comorbilidades observadas: hipertensión arterial, diabetes mellitus, artritis reumatoide (18 %), síndrome de Sjögren, lupus y colitis ulcerativa crónica inespecífica. Complicaciones: deterioro visual, cataratas y ceguera. La uveítis afecta su vida en el 83 % de los casos, en el 41 % a diario y el 49 % necesitan cuidados de otra persona. El 79 % reciben atención privada, el 43 % cuenta con seguridad social, gastando mensualmente $3,590 ± $2,730.65 pesos en medicamentos, transporte, consulta médicas y estudios. Anualmente con ausentismo laboral de 8.5 ± 14.56 días, más 7.0 días de incapacidad u hospitalización. El 51 % refieren falta de apoyo para conocer la enfermedad. Conclusiones: Se trata del primer estudio nacional que escenifica la condición de los pacientes con uveítis y las insuficiencias por las que atraviesan, incluyendo el ámbito económico y biopsicosocial.


Abstract Objective: Determine the psychosocial and economic impact suffered by patients diagnosed with uveitis in Mexico. Methods: Survey in uveitis-diagnosed patients. Demographic data and socioeconomic level were recorded. Symptoms, time to diagnosis, type of treatment, behavior, attitudes and feelings towards the disease were identified. Results: One hundred surveys were conducted in patients with uveitis, who had a mean age of 45 ± 17.08 years, and socioeconomic level ≤ D; 54 were females. Diagnostic delay was 1.87 ± 2.73 years. Annually, patients attend 2.1 ± 2.14 appointments per month, and are admitted once to the emergency department and remain hospitalized for 3.7 days. Patients use systemic treatment with steroidal anti-inflammatory drugs (53 %), immunosuppressant agents (31 %), biological therapy (7 %), topical treatment with lubricants (44 %) or steroids (26 %) and undergo surgery (39 %). Observed comorbidities include hypertension, diabetes mellitus, rheumatoid arthritis (18 %), Sjögren’s syndrome, systemic lupus erythematosus, and nonspecific chronic ulcerative colitis. Complications: visual impairment, cataracts and blindness. Uveitis affects their life in 83 % of cases, in 41 % does it daily, and 49 % need care from another person. Seventy-nine percent receive private care and 43 % have social security, with $ 3,590 ± $ 2,730.65 pesos being spent monthly on medicines, transportation, medical appointments and studies. Annually, work absenteeism is 8.5 ± 14.56 days, plus 7.0 days of disability or hospitalization; 51% refer lack of support to learn about the disease. Conclusions: This is the first national study to portray the condition of patients with uveitis and the shortcomings they go through, including the economic and biopsychosocial fields.


Assuntos
Humanos , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Uveíte/economia , Uveíte/psicologia , Fatores Socioeconômicos , Fatores de Tempo , Uveíte/diagnóstico , Uveíte/terapia , Atividades Cotidianas , Comorbidade , Conhecimentos, Atitudes e Prática em Saúde , Efeitos Psicossociais da Doença , Diagnóstico Tardio , Hospitalização , Tempo de Internação , México
7.
Ophthalmology ; 128(9): 1337-1345, 2021 09.
Artigo em Inglês | MEDLINE | ID: mdl-33675850

RESUMO

PURPOSE: To evaluate changes in health-related and vision-related quality of life (VRQoL) among patients with noninfectious uveitis who were treated with antimetabolites. DESIGN: Secondary analysis of a randomized controlled trial. PARTICIPANTS: Patients with noninfectious uveitis from India, the United States, Australia, Saudi Arabia, and Mexico. METHODS: From 2013 through 2017, 216 participants were randomized to receive 25 mg weekly oral methotrexate or 1.5 g twice daily oral mycophenolate mofetil. Median changes in quality of life (QoL) were measured using Wilcoxon signed-rank tests, and differences between treatment groups were measured using linear mixed models, adjusting for baseline QoL score, age, gender, and site. Among Indian patients, VRQoL scores from a general scale (the National Eye Institute Visual Function Questionnaire [NEI-VFQ]) and a culturally specific scale (the Indian Visual Function Questionnaire [IND-VFQ]) were compared using Pearson correlation tests. MAIN OUTCOME MEASURES: Vision-related QoL (NEI-VFQ and IND-VFQ) and health-related QoL (HRQoL; physical component score [PCS] and mental component score [MCS] of the Medical Outcomes Study 36-Item Short Form Survey [SF-36v2]) were measured at baseline, the primary end point (6 months or treatment failure before 6 months), and the secondary end point (12 months or treatment failure between 6 and 12 months). RESULTS: Among 193 participants who reached the primary end point, VRQoL increased from baseline by a median of 12.0 points (interquartile range [IQR], 1.0-26.1, NEI-VFQ scale), physical HRQoL increased by a median of 3.6 points (IQR, -1.4 to 14.9, PCS SF-36v2), and mental HRQoL increased by a median of 3.0 points (IQR, -3.7 to 11.9, MCS SF-36v2). These improvements in NEI-VFQ, SF-36v2 PCS, and SF-36v2 MCS scores all were significant (P < 0.01). The linear mixed models showed that QoL did not differ between treatment groups for each QoL assessment (NEI-VFQ, IND-VFQ, PCS SF-36v2, and MCS SF-36v2; P > 0.05 for all). The NEI-VFQ and IND-VFQ scores for Indian participants were correlated highly at baseline and the primary and secondary end points (correlation coefficients, 0.87, 0.80, and 0.90, respectively). CONCLUSIONS: Among patients treated with methotrexate or mycophenolate mofetil for uveitis, VRQoL and HRQoL improved significantly over the course of 1 year and did not differ by treatment allocation. These findings suggest that antimetabolites could improve overall patient well-being and daily functioning.


Assuntos
Inibidores Enzimáticos/uso terapêutico , Imunossupressores/uso terapêutico , Metotrexato/uso terapêutico , Ácido Micofenólico/uso terapêutico , Qualidade de Vida/psicologia , Uveíte/tratamento farmacológico , Administração Oral , Adulto , Idoso , Feminino , Saúde , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Perfil de Impacto da Doença , Inquéritos e Questionários , Uveíte/psicologia , Visão Ocular
8.
Br J Ophthalmol ; 105(7): 935-940, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-32709757

RESUMO

AIMS: To assess vision-related (VR-QOL) and health-related quality of life (HR-QOL) in a large series of patients with de novo uveitis at baseline and 6-month follow-up. METHODS: Non-inferiority, prospective, multicentre, cluster randomised controlled trial registered under the Unique Identifier: NCT01162070. VR-QOL and HR-QOL were assessed by the 25-item National Eye Institute Visual Function Questionnaire (VFQ-25) and the Medical Outcomes Study 36-item Short Form Survey (SF-36). RESULTS: At inclusion, 466 patients completed the VFQ-25. The mean composite score was 80.0 (±16.7). In multivariate analysis, higher age, female sex and insidious onset were significantly associated with lower QOL. At 6 months, 138 patients completed the VFQ-25, with a significantly higher mean composite score of 82.6 (±16.7). SF-36 mental component was 42.9 (±11.3) and physical component was 47.2 (±8.5) at inclusion (n=425). HR-QOL improvement at 6 months was not clinically significant. CONCLUSION: QOL seems relatively well preserved in this cohort; only VR-QOL improved significantly at 6 months, especially in patients with low initial visual acuity.


Assuntos
Qualidade de Vida/psicologia , Uveíte/psicologia , Doença Aguda , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Doença Crônica , Análise Custo-Benefício , Feminino , Nível de Saúde , Inquéritos Epidemiológicos , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Perfil de Impacto da Doença , Inquéritos e Questionários , Uveíte/diagnóstico , Uveíte/economia , Uveíte/fisiopatologia , Acuidade Visual/fisiologia , Adulto Jovem
9.
Ophthalmology ; 127(12): 1710-1718, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-32717341

RESUMO

PURPOSE: To evaluate the responsiveness of quality of life (QoL) metrics to ocular and systemic events in patients with noninfectious uveitis. DESIGN: Cohort study using randomized controlled trial data. PARTICIPANTS: Patients with active or recently active intermediate, posterior, or panuveitis enrolled in the Multicenter Uveitis Steroid Treatment (MUST) Trial and Follow-up Study. METHODS: Data on the 25-item National Eye Institute Visual Functioning Questionnaire (NEI-VFQ-25), EuroQol Questionnaire (EQ-5D), and Short Form Survey Instrument (SF-36) were evaluated semiannually during the first 3 years after randomization. The impact of ocular (e.g., changes in visual acuity [VA], activity status, cataract surgery) and systemic events (e.g., infections requiring treatment) on the 6-month changes in QoL was assessed for each metric using generalized estimating equations. MAIN OUTCOME MEASURES: The primary outcomes were the 6-month changes in vision-related (NEI-VFQ-25) and general health-related (EQ-5D index, SF-36 physical component summary [PCS]) QoL. RESULTS: Changes in VA (adjusted change [aΔ]: 2.70 units per 5 letter change, P < 0.001), implant placement in at least 1 eye (aΔ: 5.50, P < 0.001), cataract surgery (aΔ: 3.01, P = 0.017), and quieting of all eyes active at the beginning of the interval (aΔ: 2.20, P < 0.010) were associated with improvements in the NEI-VFQ-25. Reductions in VA (aΔ: -0.014 per 5 letter decline, P = 0.003), infections requiring a prescription (aΔ: -0.024, P = 0.021), and incident uveitis activity in at least 1 eye (aΔ: -0.023, P = 0.031) were associated with declines in the EQ-5D index. Hospitalization (aΔ: -2.24, P = 0.019), infections requiring a prescription (aΔ: -1.00, P = 0.024), and vitreous hemorrhage in at least 1 eye (aΔ: -1.92, P = 0.021) were associated with declines in the SF-36 PCS. Declines in VA, initiation in IOP medication, and age were associated with changes in SF-36 PCS; however, the magnitude of the change was less than a single point. CONCLUSIONS: The NEI-VFQ-25 was more sensitive to ocular changes than the general QoL metrics but less sensitive to acute systemic events. When performing QoL or cost-effectiveness analyses, it is important to consider the expected outcomes (e.g., ocular vs. systemic) to ensure that the selected measurement is sensitive enough to detect clinically important changes in disease status or effects of treatment.


Assuntos
Qualidade de Vida/psicologia , Uveíte/psicologia , Visão Ocular/fisiologia , Adulto , Idoso , Benchmarking , Extração de Catarata , Estudos de Coortes , Feminino , Seguimentos , Glucocorticoides/uso terapêutico , Nível de Saúde , Inquéritos Epidemiológicos , Humanos , Masculino , Pessoa de Meia-Idade , Indicadores de Qualidade em Assistência à Saúde , Ensaios Clínicos Controlados Aleatórios como Assunto , Perfil de Impacto da Doença , Inquéritos e Questionários , Estados Unidos , Uveíte/tratamento farmacológico , Uveíte/fisiopatologia , Acuidade Visual/fisiologia
10.
BMC Ophthalmol ; 20(1): 125, 2020 Mar 30.
Artigo em Inglês | MEDLINE | ID: mdl-32228570

RESUMO

PURPOSE: Outcome measurements currently used in chronic uveitis care fail to cover the full patient perspective. The aim of this study is to develop a conceptual model of the factors that adult patients with chronic uveitis consider to be important when evaluating the impact of their disease and treatment. METHODS: A qualitative study design was used. Twenty chronic uveitis patients were recruited to participate in two focus groups. Data were transcribed verbatim and analysed using thematic analysis in ATLAS.ti. RESULTS: Coding of the transcripts resulted in a total of 19 codes divided over five themes: 1) disease symptoms and treatment; 2) diagnosis and treatment process; 3) impact on daily functioning; 4) emotional impact; and 5) treatment success factors. CONCLUSION: The conceptual model resulting from this study can contribute to the development of future uveitis specific measures in adults.


Assuntos
Qualidade de Vida/psicologia , Uveíte/psicologia , Atividades Cotidianas , Adulto , Idoso , Doença Crônica , Feminino , Grupos Focais , Humanos , Masculino , Pessoa de Meia-Idade , Medidas de Resultados Relatados pelo Paciente , Pesquisa Qualitativa , Projetos de Pesquisa , Inquéritos e Questionários , Uveíte/diagnóstico , Uveíte/terapia
11.
Rheumatol Int ; 40(7): 1117-1121, 2020 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-32088753

RESUMO

Uveitis (JIA-U), the most common extra-articular manifestation in juvenile idiopathic arthritis (JIA), may cause severe impairment of vision in children and affect their quality of life (QoL). Considering the lack of uveitis-related QoL assessment questionnaire, and multidimensional nature of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR), commonly used for monitoring and assessing the health status of children with JIA, we performed a cross-sectional study to investigate the potential of the JAMAR in estimation of QoL in children suffering from JIA-U. The study included 42 children with JIA, 21 of whom had JIA-U. Both children and their parents completed the JAMAR. We compared two groups of children (JIA-U and JIA without uveitis) and their parents against five extracted questionnaires items (QoL, functional ability, pain level, disease activity estimation, and current emotional state of the child) using the independent-samples t test to verify the differences and the Pearson correlation coefficient to measure the strength of a linear association between variables. No significant statistical difference in any of the examined variables was found between the two groups of children. In the groups of parents, current emotional state of children with JIA-U was assessed to be significantly worse (t = 2.05, p < 0.05) and the overall level of functioning significantly lower (t = 2.03, p < 0.05) than children without uveitis. Our results suggest the need for adding the uveitis-specific questionnaires items to JAMAR to improve its sensitivity and specificity in the assessment of QoL in children suffering from JIA-U, as well as designing a second assessment tool such as uveitis-specific questionnaires.


Assuntos
Artrite Juvenil/fisiopatologia , Qualidade de Vida , Uveíte/fisiopatologia , Adolescente , Antirreumáticos/uso terapêutico , Artrite Juvenil/tratamento farmacológico , Artrite Juvenil/psicologia , Catarata/etiologia , Catarata/fisiopatologia , Catarata/psicologia , Criança , Pré-Escolar , Feminino , Glaucoma/etiologia , Glaucoma/fisiopatologia , Glaucoma/psicologia , Humanos , Edema Macular/etiologia , Edema Macular/fisiopatologia , Edema Macular/psicologia , Masculino , Pais , Autorrelato , Uveíte/complicações , Uveíte/tratamento farmacológico , Uveíte/psicologia , Transtornos da Visão/etiologia , Transtornos da Visão/fisiopatologia , Transtornos da Visão/psicologia
12.
Am J Ophthalmol ; 208: 47-55, 2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31201795

RESUMO

PURPOSE: To investigate time trade-off (TTO) utility values in patients with noninfectious uveitis and determine whether patient demographics and clinical characteristics are associated with utility scores. DESIGN: Time trade-off utility analysis. METHODS: Setting: A tertiary care uveitis center in San Francisco, California, USA. PATIENT POPULATION: One hundred and four consecutive adults with noninfectious uveitis, enrolled between November 2016 and February 2017. MAIN OUTCOME MEASURES: TTO utility values, as collected by an interviewer-guided survey. Information regarding general health, ocular symptoms, and religion was also collected and medical record review was conducted to record anatomic location of uveitis, disease activity, visual acuity, and treatments. Multivariable regression analysis with backward selection was used to identify variables associated with TTO values. RESULTS: Median TTO score was 0.975 (interquartile range [IQR]: 0.8-1.0), corresponding to trading a median 1.28 years of remaining life for healthy eyes (IQR: 0-6.29). Regression analysis revealed that worse eye visual acuity, >6 months of oral corticosteroid use, and current antidepressant use were associated with lower TTO scores (P = .008, P = .006, P = .008, respectively), controlling for age and sex. In particular, patients who had been taking oral corticosteroids for more than 6 months, regardless of dose, were 10.5 times more likely to trade 20% or more years of remaining life (TTO ≤0.8) than patients not taking oral corticosteroids (95% confidence interval: 2.3, 48.1; P = .002). CONCLUSIONS: Patients with noninfectious uveitis had measurable, though modest, reductions in quality of life, as assessed by TTO, and these decreases were significantly associated with visual acuity in the worse eye and long-term oral corticosteroid use.


Assuntos
Qualidade de Vida/psicologia , Perfil de Impacto da Doença , Uveíte/psicologia , Administração Oral , Adulto , Antidepressivos/administração & dosagem , Estudos Transversais , Feminino , Glucocorticoides/administração & dosagem , Nível de Saúde , Inquéritos Epidemiológicos , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Centros de Atenção Terciária , Uveíte/fisiopatologia , Acuidade Visual/fisiologia
13.
Br J Ophthalmol ; 103(11): 1639-1644, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-30745307

RESUMO

BACKGROUND: Uveitis is inflammation inside the eye. The objective of this study is to assess the cost-effectiveness of a dexamethasone implant plus current practice (immunosuppressants and systemic corticosteroids) compared with current practice alone, in patients with non-infectious intermediate, posterior or pan-uveitis and to identify areas for future research. METHODS: A Markov model was built to estimate the costs and benefits of dexamethasone. Systematic reviews were performed to identify available relevant evidence. Quality of life data from the key randomised-controlled trial (HURON) was used to estimate the interventions' effectiveness compared with the trial's comparator arm (placebo plus limited current practice (LCP)). The analysis took a National Health Service and Personal Social Services perspective. Costs were calculated based on standard UK sources. RESULTS: The incremental cost-effectiveness ratio (ICER) of one dexamethasone implant compared with LCP is estimated as £19 509 per quality-adjusted life year (QALY) gained. The factors with the largest impact on the results were rate of blindness and relative proportion of blindness cases avoided by dexamethasone. Using plausible alternative assumptions, dexamethasone could be cost saving or it may be associated with an ICER of £56 329 per QALY gained compared with LCP. CONCLUSIONS: Dexamethasone is estimated to be cost-effective using generally accepted UK thresholds. However, there is substantial uncertainty around these results due to scarcity of evidence. Future research on the following would help provide more reliable estimates: effectiveness of dexamethasone versus current practice (instead of LCP), with subgroup analyses for unilateral and bilateral uveitis, incidence of long-term blindness and effectiveness of dexamethasone in avoiding blindness.


Assuntos
Análise Custo-Benefício , Dexametasona/economia , Implantes de Medicamento/economia , Glucocorticoides/economia , Uveíte/tratamento farmacológico , Uveíte/economia , Adulto , Dexametasona/administração & dosagem , Feminino , Glucocorticoides/administração & dosagem , Nível de Saúde , Humanos , Masculino , Cadeias de Markov , Qualidade de Vida/psicologia , Anos de Vida Ajustados por Qualidade de Vida , Medicina Estatal , Reino Unido , Uveíte/psicologia , Vitrectomia , Corpo Vítreo/efeitos dos fármacos
14.
Ocul Immunol Inflamm ; 27(1): 99-107, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-29020477

RESUMO

PURPOSE: To evaluate the quality of life in individuals with bilateral visual impairment secondary to uveitis and its association with sociodemographic, clinical and psychosocial aspects. METHODS: Data were collected through a structured interviews, using four forms; the SF-12v2, HADS, NEI-VFQ-25 and a specific form developed to collect clinical and sociodemographic data. RESULTS: 80 patients were included with a mean age of 42.8 years; 63.8% female; 57.5% with permanent reduction of familiar income. The average number of medical visits was 15.2 ±10.7/year. In terms of health-related quality of life (HRQol), the mean of VFQ-25 score was 36.6 ± 15.1 and the mean of SF-12 physical and mental components scores were 43.3 ± 9.9 and 44.9 ± 12.2. Anxiety and depression symptoms were found in 65.1% and 32.5% of patients, respectively. CONCLUSIONS: Visual impairment has impact on several scales of HRQoL leading to productivity loss and consumption of health resources.


Assuntos
Transtornos de Ansiedade/psicologia , Transtorno Depressivo/psicologia , Qualidade de Vida/psicologia , Uveíte/psicologia , Baixa Visão/psicologia , Pessoas com Deficiência Visual/psicologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Brasil , Criança , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , Perfil de Impacto da Doença , Inquéritos e Questionários , Centros de Atenção Terciária , Acuidade Visual
15.
Ocul Immunol Inflamm ; 27(5): 731-742, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-29969331

RESUMO

Purpose: To estimate the prevalence of positive anxiety and depression screening in patients with ocular inflammatory disease (OID). The predictors associated with anxiety and depressive symptoms were investigated. Methods: A cross-sectional study was conducted. The Thai Hospital Anxiety and Depression Scale (HADS), a sociodemographic questionnaire, and the Thai Visual Functioning Questionnaire 28 were administered to all participants. Associations were estimated using the Cox regression. Results: Of the 86 participants, 12.8% and 8.1% screened positive for anxiety and depression, respectively. Predictors of an increase in both HADS-Anxiety and HADS-Depression scores comprised poor understanding of OIDs [adjusted relative probability (aRP) = 1.56; p = 0.021 and 1.59; p = 0.012, respectively], and low overall composite score (aRP = 1.45; p = 0.022 and 1.6; p = 0.002, respectively). Conclusions: Approximately one-tenth of our patients screened positive for anxiety and depression. Patients with poor understanding of their OID and poor self-reported visual function were at an increased risk.


Assuntos
Transtornos de Ansiedade/epidemiologia , Transtorno Depressivo/epidemiologia , Uveíte/psicologia , Adulto , Idoso , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Prevalência , Qualidade de Vida , Análise de Regressão , Tailândia/epidemiologia , Baixa Visão/psicologia , Adulto Jovem
16.
Br J Ophthalmol ; 103(9): 1284-1288, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-30361275

RESUMO

BACKGROUND/AIMS: To measure health-related quality of life (HRQOL) in patients with uveitis using time trade-off (TTO) and standard gamble (SG) methods of direct utility analysis. METHODS: Consecutive patients attending a tertiary referral uveitis clinic were administered standardised, interview-delivered TTO and SG questionnaires and completed the European Quality of Life Five Dimensions Five Level (EQ5D-5L) questionnaire. Clinical data recorded included best-corrected visual acuity, uveitis anatomical and clinical classifications, duration since diagnosis, disease activity, current medication and any ocular or systemic comorbidities. RESULTS: Two hundred patients with uveitis (124 female, 76 male, median age 54 years) were included. Overall mean TTO utility was 0.831 (95% CI 0.802 to 0.860); mean SG utility was 0.868 (95% CI 0.840 to 0.896) and mean EQ5D-5L utility was 0.742 (95% CI 0.702 to 0.782). There was a negative correlation between visual acuity and mean HRQOL (6/12 or better: TTO 0.86, SG 0.893; 6/15-6/60: TTO 0.662, SG 0.742; worse than 6/60: TTO 0.608, SG 0.712). Poor vision in the better- seeing eye (p=0.004), bilateral disease (p=0.047) and concurrent glaucomatous optic neuropathy (p=0.005) were predictors of poor TTO HRQOL. No correlation was found between HRQOL and duration of diagnosis, a flare of uveitis or being on systemic therapy. Patients with uveitis with poor vision have a TTO value worse than patients with end-stage renal failure on haemodialysis or those with AIDS. CONCLUSION: Loss of vision resulting from uveitis is associated with reduced HRQOL. The TTO and SG utility values appear directly dependent on the degree of vision loss and not on the duration of disease or systemic medications.


Assuntos
Qualidade de Vida , Uveíte/psicologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Acuidade Visual , Adulto Jovem
17.
Br J Ophthalmol ; 102(8): 1160-1166, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29378727

RESUMO

BACKGROUND/AIM: To survey the frequency, character, severity and impact of ocular pain on quality of life in adult patients with non-infectious uveitis (NIU). METHODS: This patient-requested cross-sectional survey study describes the results of three self-administered questionnaires (the National Eye Institute Visual Function Questionnaire, the 36-Item Short Form Health Survey (SF-36) and the McGill Pain Questionnaire Dutch Language Version) from 147 patients with NIUs from a university-based tertiary referral centre in Utrecht. RESULTS: The mean Visual Function Questionnaire (VFQ) Ocular Pain Score of all patients with NIU was 72 (±24), which is significantly lower than an ocular disease-free reference group (90±15, P<0.0001), indicating more ocular pain. This was true for all types of NIU, regardless of the localisation: although Ocular Pain Scores were lower in patients with anterior uveitis (AU) compared with patients with non-AU (mean 62 (±24) vs 74 (±24), P=0.04), patients with non-AU still scored substantially lower than the reference group that had no ocular history (P<0.0001). Patients with NIU also scored significantly lower on all other VFQ subscales as well as on the SF-36 subscales 'Role Limitations due to physical problems', 'Vitality', 'General health' and 'Bodily Pain' compared with controls. The VFQ Ocular Pain subscale correlated with other quality of life subscales (both VFQ-25 and SF-36), indicating a relationship between pain and quality of life. CONCLUSION: This study shows that ocular pain is highly prevalent in patients with NIU, regardless of the localisation. Furthermore, ocular pain has an impact on quality of life.


Assuntos
Dor Ocular/epidemiologia , Qualidade de Vida/psicologia , Uveíte/complicações , Adulto , Idoso , Estudos Transversais , Dor Ocular/psicologia , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Países Baixos/epidemiologia , Prevalência , Perfil de Impacto da Doença , Inquéritos e Questionários , Uveíte/psicologia , Acuidade Visual
18.
Ocul Immunol Inflamm ; 26(5): 717-725, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-28323495

RESUMO

PURPOSE: To analyze the influence of socio-demographic, comorbidity, and clinical-related variables in the vision-related quality of life (VR-QoL) of non-infectious uveitis patients. METHODS: Cross-sectional study includes 156 consecutive non-infectious uveitis patients from a tertiary uveitis clinic from Madrid (Spain). The main outcome was the log-transformed composite score of the Visual Functioning Questionnaire 25. Bivariate and multivariate ordinary least-squares regression models were performed and results expressed using effect sizes with 95% confidence intervals (95% CI). RESULTS: In the multivariate analysis, one unit increase in the logarithm of the minimum angle of resolution scale [i.e., worse best corrected visual acuity (BCVA)] was associated with a seven times worse VR-QoL (a 0.14-fold change [95% CI: 0.07-0.27]). Patients with ocular comorbidities had a 64% worse VR-QoL (a 0.61-fold change [95% CI: 0.49-0.77]). CONCLUSIONS: Lower BCVA and the presence of ocular comorbidities had a significant, independent, and deleterious effect in the VR-QoL of non-infectious uveitis patients.


Assuntos
Nível de Saúde , Qualidade de Vida , Uveíte/psicologia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Incidência , Masculino , Pessoa de Meia-Idade , Espanha/epidemiologia , Inquéritos e Questionários , Uveíte/epidemiologia , Uveíte/fisiopatologia , Acuidade Visual , Adulto Jovem
19.
Ocul Immunol Inflamm ; 26(7): 1078-1093, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-28548554

RESUMO

PURPOSE: To screen for psychological disorders in patients with active uveitis. METHODS: Patients were screened for depression (BDI-II), state anxiety (STAI-I), VR-QOL (NEI-VFQ-25), and HR-QOL (SF-36). Association of depression and anxiety with sociodemographic and clinical parameters and with VR-QOL and HR-QOL were analyzed. Multivariate linear regression models were constructed for NEI-VFQ-25 and SF-36 subscales. RESULTS: Of 99 patients, 37.3% screened positive for depression and 52.5% for anxiety. Depressed patients had lower visual acuity in the better seeing eye (p = 0.013) and more frequently panuveitis (p = 0.018). Anxious patients were younger (p = 0.009), had earlier onset of uveitis (p = 0.015), and had more frequently panuveitis (p = 0.016). Bivariate comparisons showed significant associations between psychological disorders and VR-QOL and HR-QOL. Significant bivariate associations were mostly lost in multivariate analyses for anxiety, but were preserved for depression. CONCLUSIONS: A positive screening test for depression and anxiety is common in patients with uveitis. Low vision and panuveitis are associated with depression. Depression is associated with impairment of VR-QOL and HR-QOL.


Assuntos
Transtornos de Ansiedade/diagnóstico , Transtorno Depressivo/diagnóstico , Escalas de Graduação Psiquiátrica , Uveíte/diagnóstico , Baixa Visão/diagnóstico , Adolescente , Adulto , Transtornos de Ansiedade/psicologia , Criança , Pré-Escolar , Estudos Transversais , Transtorno Depressivo/psicologia , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Qualidade de Vida/psicologia , Perfil de Impacto da Doença , Inquéritos e Questionários , Uveíte/psicologia , Baixa Visão/psicologia , Acuidade Visual/fisiologia , Adulto Jovem
20.
Pediatr Rheumatol Online J ; 15(1): 58, 2017 Aug 04.
Artigo em Inglês | MEDLINE | ID: mdl-28778202

RESUMO

BACKGROUND: Chronic health conditions in children can have a significant impact on their quality of life. The aim of this study was to explore the subjective experience of children and young people being treated for chronic, non-infectious uveitis associated with a systemic disease such as juvenile idiopathic arthritis. METHODS: A semi-structured interview was conducted with 10 children and young people aged between 6 and 18 years of age and their parents. RESULTS: Preliminary thematic analysis indicated that both the treatment and complications of the disorder have a significant impact on the quality of life and emotional well-being of patients, not only in terms of the discomfort experienced but also in perceptions of social isolation, anxiety and sense of injustice. CONCLUSION: This study shows that themes including "impact on school", "social factors" and "emotional reactions" are important domains influencing health-related quality of life (HRQoL) in children with chronic uveitis. Inclusion of questions relating to these domains should be considered in future uveitis-specific tools examining HRQoL in these patients.


Assuntos
Artrite Juvenil/complicações , Pacientes/psicologia , Qualidade de Vida/psicologia , Uveíte/psicologia , Adolescente , Artrite Juvenil/psicologia , Criança , Estudos Transversais , Feminino , Humanos , Masculino , Pais/psicologia , Medidas de Resultados Relatados pelo Paciente , Índice de Gravidade de Doença , Inquéritos e Questionários , Uveíte/etiologia
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