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1.
Am J Ophthalmol ; 261: 176-186, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38281569

RESUMO

PURPOSE: To investigate contrast sensitivity (CS) as a screening tool to detect eye disease and assess its association with both eye disease and vision-related quality of life. DESIGN: Cross-sectional study. METHODS: Setting and population: Adults receiving care from a free clinic and a Federally Qualified Health Center in Michigan. MAIN OUTCOME MEASURES: Screening positive for eye disease and Visual Function Questionnaire (VFQ) score. OBSERVATION: Participants received a vision exam reviewed via telemedicine for disease, completed a demographic survey, and the 9-item VFQ. The ability of CS to predict eye disease was explored and area under the curve (AUC) is reported. Logistic and linear regression were used to investigate the continuous effect of CS on the probability of screening positive for eye disease and VFQ score, respectively, adjusting for age and visual acuity. RESULTS: 1159 included participants were, on average, 54.9 ± 14.5 years old, 62% identified as female, 34% as White, 54% as Black, 10% as Hispanic/Latino, and reported mean VFQ score of 79.7 ± 15.3. CS ranged from 0.00 to 1.95 log units (mean = 1.54 ± 0.24), 21% of eyes had glaucoma, 19% cataract, 6% DR, and 2% AMD. AUCs were 0.53 to 0.73. A 0.3 log unit decrease in better eye CS was associated with increased odds of glaucoma (odds ratio [OR] = 1.35, confidence interval [CI] = 1.09-1.67), cataract (OR = 1.35, CI = 1.05-1.72), DR (OR = 2.05, CI = 1.51-2.77), and AMD (OR = 2.08, CI = 1.10-3.91). A 0.3 log unit increase in better eye CS was associated with a 5.9 unit increase in VFQ. CONCLUSION: While CS alone is not sufficient to identify people with eye disease, it is an important measure of visual function that can add value to comprehensive eye screening.


Assuntos
Catarata , Glaucoma , Adulto , Humanos , Feminino , Pessoa de Meia-Idade , Idoso , Qualidade de Vida , Sensibilidades de Contraste , Estudos Transversais , Inquéritos e Questionários , Perfil de Impacto da Doença
2.
Acta Ophthalmol ; 102(2): 201-207, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-37533157

RESUMO

PURPOSE: To evaluate the effect of glaucoma on vision-related quality of life (VRQoL), lifestyle, physical factors and socioeconomic status in a 70-year-old population in Gothenburg, Sweden. METHODS: Responses to questionnaires (N = 1182) between groups with and without self-reported glaucoma were analysed. Questionnaires included National Eye Institute Visual Functioning Questionnaire (NEI VFQ-25), Short-Form Health Survey (SF-36), physical activity, socioeconomics, alcohol and tobacco consumption. Balance test and body mass index were also included. About half of the participants were randomized to ophthalmic examination (N = 560), variables were analysed separately according to known and confirmed glaucoma, ocular hypertension and/or cases of previously unknown glaucoma. RESULTS: Both conventional and Rasch analysis of the NEI VFQ-25 showed that VRQoL was lower for individuals self-reporting glaucoma (p = 0.003/p = 0.024). Regarding general QoL, the participants did not differ apart from people self-reporting glaucoma reported worse general health (p = 0.01). Using logistic regression with lower VRQoL as the dependent variable glaucoma was not a significant predictor of poor VRQoL, odds ratio (OR) 1.83 (95% confidence interval (CI) 0.76-4.39, p = 0.18). Low household income was associated with lower VRQoL (OR 1.63, 95% CI 1.14-2.33, p = 0.01). Socioeconomics, physical activity and lifestyle factors were comparable between the groups (N = 915). Among participants who underwent ophthalmic examination no significant differences were found between glaucoma cases and non-glaucoma cases in relation to VRQoL (N = 560). CONCLUSIONS: Patients with self-reported glaucoma assessed a lower VRQoL but not lower general quality of life. Poorer household income was associated with worse VRQoL. General health was reported low in the glaucoma population but lifestyle or physical factors did not diverge.


Assuntos
Glaucoma , Qualidade de Vida , Humanos , Idoso , Perfil de Impacto da Doença , Pressão Intraocular , Testes de Campo Visual , Estudos Prospectivos , Glaucoma/diagnóstico , Glaucoma/epidemiologia , Inquéritos e Questionários
3.
Qual Life Res ; 33(3): 777-791, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-38112864

RESUMO

PURPOSE: The Brain Injury associated Visual Impairment - Impact Questionnaire (BIVI-IQ) was developed to assess the impact of post-stroke visual impairment. The development of the questionnaire used robust methods involving stroke survivors and clinicians. The aim of this study was to assess the validity of the BIVI-IQ in a stroke population. METHODS: Stroke survivors with visual impairment were recruited from stroke units, outpatient clinics and non-healthcare settings. Participants were asked to complete questionnaire sets on three separate occasions; the BIVI-IQ at each visit with additional questionnaires at baseline and visit 2. Vision assessment and anchor questions from participants and clinicians were collected. The analysis included assessment of missing data, acceptability, Rasch model analysis, test-retest reliability, construct validity (NEI VFQ-25, EQ-5D-5L) and responsiveness to change. RESULTS: 316 stroke survivors completed at least one questionnaire of the 326 recruited. Mean age was 67 years and 64% were male. Adequate fit statistics to the Rasch model were reached (χ2 = 73.12, p = 0.02) with two items removed and thresholds of two adjusted, indicating validity and unidimensionality. Excellent test-retest reliability was demonstrated (ICC = 0.905) with a 3-month interval. Construct validity was demonstrated with a strong significant correlation to the NEI VFQ-25 (r = 0.837, p < 0.01). The BIVI-IQ also demonstrated responsiveness to change with significant differences identified between groups based on participant and clinician anchor questions (X2 = 23.29, p < 0.001; X2 = 24.56, p < 0.001). CONCLUSION: The BIVI-IQ has been shown to be valid and practical for 'everyday' use by clinicians and researchers to monitor vision-related quality of life in stroke survivors with visual impairment.


Assuntos
Lesões Encefálicas , Baixa Visão , Humanos , Masculino , Idoso , Feminino , Qualidade de Vida/psicologia , Reprodutibilidade dos Testes , Inquéritos e Questionários , Psicometria/métodos , Perfil de Impacto da Doença
4.
Audiol., Commun. res ; 29: e2722, 2024. tab
Artigo em Português | LILACS | ID: biblio-1533842

RESUMO

RESUMO Objetivo investigar os impactos comunicativos, sociais e emocionais gerados pela adoção de medidas protetivas contra a COVID-19 e associá-los ao grau da perda auditiva e ao tempo de uso dos aparelhos de amplificação sonora individual. Métodos estudo transversal e quantitativo, com 72 indivíduos, divididos em adultos e idosos, com perda auditiva bilateral, de grau até moderadamente severo, protetizados antes da pandemia em um programa público de saúde auditiva e que mantiveram uso efetivo dos dispositivos. Os sujeitos foram convidados a participar do estudo enquanto aguardavam consulta. Os prontuários foram acessados, a fim de coletar informações sobre o perfil audiológico e adaptação/uso dos aparelhos de amplificação sonora individual. Em sala silenciosa, foi aplicado, oralmente, protocolo contendo questões objetivas e os dados foram tabulados e submetidos aos testes estatísticos Igualdade de Duas Proporções e Qui-Quadrado. Resultados nos dois grupos, um número significativo de usuários teve a comunicação impactada pelo uso de máscaras e pelo distanciamento físico, predominando, entre os adultos, a dificuldade com as tecnologias digitais (celulares/computadores), enquanto nas videochamadas, os prejuízos comunicativos foram mais experenciados pelos idosos. Os empecilhos comunicativos e sociais existiram, independentemente do perfil audiológico e do tempo de uso dos dispositivos. Quando questionados se deixaram de se comunicar e se as medidas afetaram a sua vida social, as respostas ficaram divididas entre "sim/às vezes" e "não". Quanto ao impacto emocional das medidas protetivas, constatou-se maior repercussão entre os adultos. Conclusão as medidas protetivas afetaram a comunicação dos usuários de aparelhos de amplificação sonora individual, porém, não desencorajaram as trocas comunicativas e as interações sociais de, aproximadamente, metade da amostra, sendo o impacto emocional mais evidente nos adultos. Tais dificuldades não estiveram relacionadas ao perfil audiológico e uso diário dos dispositivos.


ABSTRACT Purpose to investigate the communicative, social, and emotional impacts generated by adopting protective measures against COVID-19 and associate them with the degree of hearing loss and the time of use of hearing aids. Methods cross-sectional quantitative study, with 72 individuals, divided into adults and older adults, with bilateral hearing loss up to moderately severe degree, users of hearing aids fitted before the pandemic in a public hearing health program who had maintained effective use of the devices. The participants were invited to participate in the study while waiting for an appointment and signed the consent form. After that, medical records were accessed to collect information about audiological profiles and the fitting/use of hearing aids. Afterward, a protocol with objective questions was orally applied in a silent room. Data were tabulated and subjected to Equality of Two Proportions and Chi-Square statistical tests. Results in both groups, a significant number of users had communication impacted by the use of masks and by social distancing, with difficulty with digital technologies (cell phones/computers) predominating among adults, while older adults more commonly experienced communicative impairments during video calls. The communicative impediment existed regardless of the audiological profile and device use time. When asked if they stopped communicating and if the measures affected their social life, the sample was divided between "yes/sometimes" and "no". As for the emotional impact of protective measures, there was a greater impact among adults. Conclusion protective measures affected the communication of hearing aids users but did not discourage communicative exchanges and social interactions for approximately half of the sample, with the emotional impact being more evident in adults. Such difficulties were not related to the audiological profile and daily use of the devices.


Assuntos
Humanos , Masculino , Feminino , Adulto , Pessoa de Meia-Idade , Idoso , Mudança Social , Meio Social , Comunicação , Equipamento de Proteção Individual , Tecnologia Digital , Distanciamento Físico , COVID-19/prevenção & controle , Auxiliares de Audição , Brasil/epidemiologia , Fatores de Risco , Perfil de Impacto da Doença , Pessoas com Deficiência Auditiva , Perda Auditiva
5.
Rev. latinoam. enferm. (Online) ; 31: e3831, Jan.-Dec. 2023. tab, graf
Artigo em Inglês | LILACS, BDENF - Enfermagem | ID: biblio-1424046

RESUMO

Abstract Objective: to analyze the psychosocial impacts of the COVID-19 pandemic among Brazilian women from rural settlements. Method: this is a quantitative and longitudinal study conducted with 13 settled women. The data were collected between January 2020 and September 2021 using questionnaires on the perception of the social environment (quality of life, social support, self-efficacy), common mental disorder symptoms and sociodemographic aspects. The data were analyzed using descriptive statistics, cluster analysis and variance analysis. Results: intersecting vulnerability conditions were identified that possibly intensified the challenges arising from the pandemic. The Quality of Life physical domain fluctuated differently and inversely according to the mental disorder symptoms. As for the psychological domain, at the end of the segment, an increase over time was identified in the entire sample, as the women's perception was better than before the pandemic. Conclusion: worsening of the participants' physical health deserves to be highlighted and, probably, it can be related to the difficulty accessing health services in this period as well as to the fear of contamination. Despite this, the participants were emotionally resilient throughout the period, including signs of improvement in terms of psychological aspects, suggesting a possible effect of the community organization of the settlement.


Resumo Objetivo: analisar os impactos psicossociais da pandemia de COVID-19 entre mulheres brasileiras de assentamentos rurais. Método: trata-se de um estudo quantitativo longitudinal com 13 mulheres assentadas. Os dados foram coletados entre janeiro de 2020 e setembro de 2021 utilizando questionários sobre a percepção do ambiente social (qualidade de vida, apoio social, autoeficácia), sintomas de transtorno mental comum e aspectos sociodemográficos. Os dados foram analisados por meio de estatística descritiva, análise de agrupamento e de variância. Resultados: foram identificadas condições de vulnerabilidade interseccionadas que, possivelmente, exacerbaram os desafios decorrentes da pandemia. O domínio físico da qualidade de vida oscilou diferentemente e inversamente de acordo com os sintomas de transtorno mental. Quanto ao domínio psicológico, no final do segmento, identificou-se em toda a amostra um incremento ao longo do tempo, pois a percepção das mulheres estava melhor do que antes da pandemia. Conclusão: a piora na saúde física das participantes merece destaque e, provavelmente, pode estar relacionada à dificuldade de acesso aos serviços de saúde neste período bem como ao medo da contaminação. Apesar disso, as participantes apresentaram-se emocionalmente resilientes em todo o período, inclusive, com sinais de melhora em relação aos aspectos psicológicos, sugerindo um possível efeito da organização comunitária do assentamento.


Resumen Objetivo: analizar los impactos psicosociales de la pandemia de COVID-19 en mujeres brasileñas de asentamientos rurales. Método: se trata de un estudio longitudinal cuantitativo con 13 mujeres asentadas. Los datos se recolectaron entre enero de 2020 y septiembre de 2021 mediante cuestionarios sobre percepción del entorno social (calidad de vida, apoyo social, autoeficacia), síntomas de trastorno mental común y aspectos sociodemográficos. Los datos se analizaron mediante estadística descriptiva, análisis de conglomerados y análisis de varianza. Resultados: se identificaron condiciones de vulnerabilidad entrelazadas que posiblemente exacerbaron los desafíos impuestos por la pandemia. El dominio físico de la calidad de vida fluctuó de manera diferente e inversa de acuerdo a los síntomas del trastorno mental. En cuanto al dominio psicológico, al final del segmento, se identificó un aumento en el tiempo en toda la muestra, dado que la percepción de las mujeres era mejor que antes de la pandemia. Conclusión: hay que destacar el empeoramiento de la salud física de las participantes que, probablemente, puede estar relacionado con la dificultad para acceder a los servicios de salud durante ese período y el miedo al contagio. A pesar de eso, las participantes fueron resilientes emocionalmente durante todo el período e, inclusive, tuvieron signos de mejoría en los aspectos psicológicos, lo que sugiere un posible efecto de la organización comunitaria del asentamiento.


Assuntos
Humanos , Feminino , População Rural , Perfil de Impacto da Doença , Impacto Psicossocial , COVID-19/psicologia , Vulnerabilidade Social
6.
Acta Ophthalmol ; 101(8): 896-902, 2023 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-37933609

RESUMO

Geographic atrophy (GA) is a prevalent cause of vision loss among elderly and is associated with a significant loss of function. We reviewed the current literature to assess the effect of GA on patients' daily lives and well-being. We record and organize the signs, symptoms, and impacts that are important in life with GA. Further, we examined the impact of GA on vision-related quality of life. The main complaint among patients was difficulties regarding daily tasks, especially reading and other near activities. However, a large proportion of patients also reported fear, frustration, and anxiety as salient symptoms with large impact. Many patients do not have adequate information about their condition as well as the prognosis. The most commonly used measure of patient-reported outcome measure (PROM) is the National Eye Institute Visual Function Questionnaire (VFQ), that reflects the severity of impact on 12 subscales, from where near activities, general vision, mental health, and role difficulties had the lowest scores. Longitudinal studies of GA and the impact of low-vision rehabilitation efforts on health-related quality of life are sparse but suggest a significant improvement on several items. PROM is included in clinical trials, and so far, no drug has shown to improve the functional outcome in terms of PROM.


Assuntos
Atrofia Geográfica , Qualidade de Vida , Humanos , Idoso , Qualidade de Vida/psicologia , Perfil de Impacto da Doença , Acuidade Visual , Visão Ocular , Inquéritos e Questionários
7.
Archiv. med. fam. gen. (En línea) ; 20(3): 19-25, nov. 2023. tab
Artigo em Espanhol | LILACS | ID: biblio-1524378

RESUMO

Introducción. El COVID-19 grave con foco neumónico se maneja en hospital, en esta población las secuelas físicas y funcionales posterior al egreso hospitalario son más frecuentes, involucran la calidad de vida y tienen repercusión en las actividades cotidianas, la autopercepción y el autocuidado.Objetivo. Identificar el tiempo transcurrido para la recuperación de la calidad de vida previa al evento COVID-19 en pacientes que requirieron hospitalización.Metodología. Diseño de cohorte antes-después en pacientes que requirieron hospitalización por cuadro de COVID-19. Se consideró expuesto a los pacientes después del evento COVID-19 y no expuesto al mismo paciente antes del evento. La calidad de vida relacionada con la salud se midió con el instrumento SF-36. El plan de análisis incluyó ecuación de regresión lineal y proyección del número de días transcurridos después de la hospitalización para recuperar la calidad de vida relacionada con la salud previa al evento COVID-19 a partir del egreso hospitalario. Resultados. La dimensión que tarda más días en recuperar la calidad de vida que poseía previa al evento COVID-19 es rol físico con 225 días, y la dimensión que menos días tarda en recuperar la calidad de vida que poseía previa el evento es vitalidad y función social, ambas con 44 días.Conclusión. El tiempo para la recuperación de la calidad de vida previo a la hospitalización es diferente en cada una de las dimensiones de la calidad de vida (AU)


Introduction. Severe COVID-19 with a pneumonic focus is managed in a hospital. In this population, the physical and functional sequelae after hospital discharge are more frequent, involve quality of life, and have an impact on daily activities, self-perception, and self-care.Aim. Identify the time elapsed for the recovery of the quality of life prior to the COVID-19 event in patients who required hospitalization.Methodology. Before-after cohort design in patients who required hospitalization due to COVID-19. Patients were considered exposed after the COVID-19 event and not exposed to the same patient before the event. Health-related quality of life was measured with the SF-36 instrument. The analysis plan included a linear regression equation and projection of the number of days elapsed after hospitalization to recover the health-related quality of life prior to the COVID-19 event from hospital discharge.Results. The dimension that takes the longest days to recover the quality of life that it had prior to the COVID-19 event is physical role with 225 days, and the dimension that takes the fewest days to recover the quality of life that it had prior to the event is vitality and social function, both with 44 days.Conclusion. The time for recovery of quality of life prior to hospitalization is different in each of the dimensions of quality of life (AU)


Assuntos
Humanos , Masculino , Feminino , Fatores de Tempo , Indicadores de Qualidade de Vida , Perfil de Impacto da Doença , COVID-19/reabilitação , Hospitalização , Qualidade de Vida , Percepção do Tempo , México
8.
BMC Ophthalmol ; 23(1): 398, 2023 Oct 02.
Artigo em Inglês | MEDLINE | ID: mdl-37784121

RESUMO

BACKGROUND: People with leprosy who have been declared Release From Treatment (RFT) are often not aware of the leprosy sequelae possibility which can decrease their quality of life. This could be because they have been adapting for a long time hence they do not feel the need to see physicians. This study seeks to compare the results of Vision-Related Quality of Life (VR-QoL) among RFT persons based on the National Eye Institute Visual Functioning Questionnaire-25 (NEI-VFQ-25) and WHO grading disability based on physical examination. METHODS: A cross-sectional study of 325 RFT subjects from leprosy communities (Singkawang, West Kalimantan and Tangerang, Banten) was conducted between 2018 and 2019. We used the NEI-VFQ-25 questionnaire that had been validated and translated into Indonesian and distributed to the leprosy population. Relationships and comparisons among variables were evaluated using Kruskal-Wallis and Mann-Whitney tests. RESULTS: There were three main results: The median composite score of VR-QoL for WHO grade 0, 1, and 2 disabilities has decreased by 13%, 25.5%, and 30% of the maximum value, respectively. Of the total, eleven subscales were statistically significant between WHO grading disability and VR-QoL based on the NEI-VFQ-25 (p < 0.05). The comparison between grade 0 and grade 2 disability in all subscales was statistically significant (p < 0.05). CONCLUSIONS: The grade of disability is related to their VR-QoL assessment using the NEI-VFQ-25 questionnaire. Thus, it can be used as an initial screening in primary healthcare settings to increase awareness of disability before a thorough physical examination.


Assuntos
National Eye Institute (U.S.) , Qualidade de Vida , Estados Unidos , Humanos , Estudos Transversais , Acuidade Visual , Inquéritos e Questionários , Perfil de Impacto da Doença
10.
BMJ Open Ophthalmol ; 8(1)2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37558407

RESUMO

BACKGROUND: Strabismus can have a great negative impact on the quality of life and the well-being of affected patients. In the past, these aspects were often neglected and, compared with somatic functioning, placed in the background. The aim of our study is to elicit factors influencing satisfaction with strabismus surgery, quality of life and expectations of surgery in order to better predict who will benefit the most and who may need further support. METHODS: We made a selection of suitable questionnaires to assess psychosocial aspects of strabismus and decided for Adult Strabismus 20 Questionnaire, Amblyopia and Strabismus Questionnaire, Diplopia Questionnaire, Expectations of Strabismus Surgery Questionnaire and Hospital Anxiety and Depression Scale. We then translated these measures (if not available in German). The patients filled out these forms as part of their preoperative orthoptic and ophthalmological assessment as well as approximately 3 months after strabismus surgery. RESULTS: We enrolled 59 patients in this study. Postoperative strabismus-related quality of life was higher after surgery and anxiety and depression levels were lower. Satisfaction with surgery was lower with higher postoperative angle and diplopia; the latter was also a determinant of lower postoperative quality of life. Higher expectations of strabismus surgery were present with higher depression levels and higher preoperative strabismus angle. CONCLUSION: Our data indicate that strabismus surgery may cause a significant improvement in several psychosocial domains. There is evidence that psychosocial factors can have significant impact on expectations with surgery. Hence, it is important to consider mental health aspects of this disease in order to treat patients in the best possible way.


Assuntos
Qualidade de Vida , Estrabismo , Adulto , Humanos , Qualidade de Vida/psicologia , Perfil de Impacto da Doença , Saúde Mental , Diplopia/etiologia , Estrabismo/cirurgia , Inquéritos e Questionários
11.
Distúrb. comun ; 35(2): 62141, 02/08/2023.
Artigo em Inglês, Português | LILACS | ID: biblio-1452465

RESUMO

Introdução: A Cardiopatia Congênita (CC) é uma doença crônica, caracterizada por anormalidades estruturais e funcionais no sistema cardiocirculatório, podendo ocorrer por fatores genéticos, mutações, alterações cromossômicas ou mesmo ter uma origem multifatorial. Estudos discutem sobre a possibilidade da CC criar um ambiente estressor para a criança e sua família, sobretudo para sua mãe, por ser o elemento da família que, geralmente, assume o acompanhamento e a execução dos cuidados com a criança. Objetivo: Identificar e descrever a percepção e sentimentos maternos acerca da doença do filho, suas dificuldades, o impacto da doença na qualidade de vida da família e suas angústias diante do futuro. Método: Pesquisa qualitativa, transversal, descritiva, com coleta de dados feita entre os meses de Dezembro de 2022 e Fevereiro de 2023, por meio de entrevistas semiestruturadas realizadas por ligação telefônica, gravada, com 13 mães de crianças com CC. O processo de análise foi orientado pela análise de conteúdo do tipo temática. Resultado: O estresse está presente na fala da maior parte das mães. Essas falas trazem à cena o fato de que este se condensa especialmente nos períodos iniciais do processo: descoberta da doença do filho, notícia da(s) cirurgia(s), responsabilidade pelos cuidados que se prolongam, isolamento materno. Conclusão: O medo da morte, do futuro e do desenvolvimento da criança são fantasmas que também circulam nas manifestações maternas e expressam a dificuldade em antecipar aos seus filhos uma subjetividade, condição de base para o desenvolvimento geral adequado. (AU)


Introduction: Congenital heart disease (CHD) is a chronic disease, characterized by structural and functional abnormalities in the cardiocirculatory system, which may occur due to genetic factors, mutations, chromosomal alterations, or even have a multifactorial origin. Studies discuss the possibility of CC creating a stressful environment for the child and his family, especially for his mother, as she is the family member who generally takes on the monitoring and execution of care for the child. Objective:To identify and describe maternal perceptions and feelings about their child's illness, their difficulties, the impact of the disease on the family's quality of life, and their anxieties about the future. Method:Qualitative, cross-sectional, descriptive research, with data collection carried out between December 2022 and February 2023, through semi-structured interviews conducted by telephone, recorded, with 13 mothers of children with CC. The analysis process was guided by thematic content analysis. Result:Stress is in the speech of most mothers. These statements bring to the fore the fact that stress is condensed especially in the early stages of the process: discovery of the child's illness, news of the surgery(s), responsibility for prolonged care, and maternal isolation. Conclusion: Fear of death, the future and the child's development are ghosts that also circulate in maternal manifestations and express the difficulty in anticipating their children, a basic condition for adequate general development. (AU)


Introducción: La cardiopatía congénita (CC) es una enfermedad crónica, caracterizada por anomalías estructurales y funcionales en el sistema cardiocirculatorio, que pueden deberse a factores genéticos, mutaciones, alteraciones cromosómicas o incluso tener un origen multifactorial. Los estudios discuten la posibilidad de que el CC genere un ambiente estresante para el niño y su familia, especialmente para su madre, ya que es ella la que generalmente asume el seguimiento y ejecución del cuidado del niño. Objetivo: Identificar y describir las percepciones y sentimientos maternos sobre la enfermedad del hijo, sus dificultades, el impacto de la enfermedad en la calidad de vida de la familia y sus angustias sobre el futuro. Método: Investigación cualitativa, transversal, descriptiva, con recolección de datos realizada entre diciembre de 2022 y febrero de 2023, a través de entrevistas semiestructuradas realizadas por teléfono, grabadas, con 13 madres de niños con CC. El proceso de análisis fue guiado por el análisis de contenido temático. Resultado: El estrés está presente en el habla de la mayoría de las madres. Estas declaraciones traen a la luz el hecho de que el estrés se condensa especialmente en las primeras etapas del proceso: descubrimiento de la enfermedad del niño, noticia de la(s) cirugía(s), responsabilidad por cuidados prolongados, aislamiento materno. Conclusión: El miedo a la muerte, al futuro y al desarrollo del niño son fantasmas que también circulan en las manifestaciones maternas y expresan la dificultad de anticiparse a sus hijos, condición básica para un adecuado desarrollo general. (AU).


Assuntos
Humanos , Masculino , Feminino , Pré-Escolar , Percepção , Cardiopatias Congênitas , Mães/psicologia , Desenvolvimento Infantil , Estudos Transversais , Perfil de Impacto da Doença , Pesquisa Qualitativa , Angústia Psicológica
12.
Vínculo ; 20(1): 66-72, 20230000.
Artigo em Português | LILACS | ID: biblio-1513085

RESUMO

A pandemia pela COVID-19 tem causado perdas significativas para as crianças, sendo o luto um processo de elaboração de perdas vividas que é experienciado de forma singular e pode ser difícil e doloroso. Consequentemente, o presente trabalho teve como objetivo identificar na literatura os impactos da pandemia covid-19 para a elaboração do luto infantil. A pergunta norteadora foi: "Quais são os impactos da pandemia para a elaboração do luto infantil?" e ela foi elaborada utilizando-se a estratégia PICO (Paciente/Problema, Intervenção, Controle/Comparação e Resultados). O levantamento bibliográfico transcorreu nas bases de dados Pepsic, Scielo e Google Acadêmico utilizando o cruzamento de palavras-chaves: "Luto infantil" AND "Pandemia" e "Luto infantil" AND "Covid-19". Dos 14 artigos selecionados, apenas 3 foram analisados. Os trabalhos analisados mostram que o luto se manifesta de diferentes maneiras em crianças durante a pandemia e evidencia a importância dos responsáveis para auxiliá-los nesse processo. Diante disso, nota-se uma necessidade de maiores estudos na área para ter um maior conhecimento e avaliar os impactos da pandemia na elaboração do luto infantil, visando medidas de preservação da saúde mental das crianças.


The COVID-19 pandemic has caused significant losses for children, and grief is a process of formulating the losses experienced in a unique way and can be very difficult and painful for those who experience it. Thus, this study aims to identify in the literature the impacts of COVID-19 pandemic on the child bereavement process. The guiding question was: "What are the impacts of the pandemic on the preparation of child bereavement?" and it was elaborated using the PICO strategy (Patient/Problem, Intervention, Control/Comparison and Results). The bibliographic survey was carried out in the Pepsic, Scielo and Google Academic databases using the crossing of keywords: "Children's grief" and "Pandemic" and "Infant grief" AND "COVID-19". From the 14 articles selected, only 3 met the review criteria and were analyzed. The selected works show that grief can manifest in different ways in children during the pandemic of COVID-19 and also the importance of those responsible to assist them in this process. In view of the results, there is a need for further studies in order to have a better understanding to evaluate the impacts of the pandemic on the child bereavement process, focusing on measures to preserve the mental health of children.


La pandemia por COVID-19 ha causado pérdidas significativas para los niños, y el duelo es un proceso de elaboración de pérdidas vividas que se experimenta de una manera única y puede ser difícil y dolorosa. En consecuencia, el presente estudio tuvo como objetivo identificar en la literatura los impactos de la pandemia de covid-19 para la elaboración del duelo infantil. La pregunta principal fue: "¿Cuáles son los impactos de la pandemia para la elaboración del duelo infantil?" y se elaboró utilizando la estrategia PICO (Paciente/Problema, Intervención, Control/Comparación y Resultados). La encuesta bibliográfica se realizó en las bases de datos Pepsic, Scielo y Google Scholar utilizando el cruce de palabras clave: "Duelo infantil" AND "Pandemia" y "Duelo infantil" AND "Covid-19". De los 14 artículos seleccionados, solo 3 fueron analizados. Los estudios analizados muestran que el duelo se manifiesta de diferentes maneras en los niños durante la pandemia y la importancia de que los responsables los asistan en este proceso. En vista de los resultados, es necesario realizar más estudios en el área para tener un mayor conocimiento y evaluar los impactos de la pandemia en la elaboración del duelo infantil, con el objetivo de adoptar medidas para preservar la salud mental de los niños.


Assuntos
Humanos , Pré-Escolar , Criança , Luto , Saúde da Criança , Perfil de Impacto da Doença , COVID-19/psicologia
13.
Photodiagnosis Photodyn Ther ; 43: 103705, 2023 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-37451656

RESUMO

BACKGROUND: To evaluate anatomical and functional changes and vision-related quality of life in patients whose glaucoma follow-up was disrupted by the COVID-19 restrictions. METHODS: This retrospective observational study included 100 patients who were followed up at the glaucoma unit. For the patients whose follow-up evaluations were postponed due to COVID-19 restrictions, visual acuity (VA), intraocular pressure (IOP), retinal nerve fiber layer (RNFL) thickness, visual field parameters [mean deviation (MD), pattern standard deviation (PSD), and visual field index (VFI)], and the National Institute of Ophthalmology Visual Function Scale-25 (NEI-VFQ-25) score were evaluated based on the measurements performed at the last visit before COVID-19 (V1) and at the first visit after the removal of COVID-19 restrictions (V2). RESULTS: The mean age of the patients was 61.1 ± 13.4 years, the mean follow-up time was 11.4 ± 4.2 months, and the mean interval between the last two visits was 7.2 ± 2.7 months. In the evaluation of the last two visits, VA was lower and IOP was higher at V2, and there was progression in the MD, PSD, and VFI values (p<0.05, for all). RNFL thickness progression was seen in 13-23% of the patients. According to the NEI-VFQ-25 evaluation, except for peripheral vision and near vision, all the remaining subscale scores and the total score were lower at V2 (p<0.05, for all). CONCLUSIONS: This study demonstrates the devastating impact of the COVID-19 pandemic on the anatomical and functional changes and vision-related quality of life together in patients with glaucoma.


Assuntos
COVID-19 , Glaucoma , Fotoquimioterapia , Humanos , Pré-Escolar , Criança , Qualidade de Vida , Pandemias , Perfil de Impacto da Doença , Fotoquimioterapia/métodos , Fármacos Fotossensibilizantes
14.
Indian J Ophthalmol ; 71(7): 2760-2766, 2023 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-37417117

RESUMO

Purpose: To evaluate the determinants affecting the quality of life in monocular glaucoma patients using the Indian vision function questionnaire. Methods: In this prospective cross-sectional study,: total of 196 patients were divided into two groups: cases and controls. Indian Vision Function Questionnaire (IND-VFQ) was administered and analyzed. One hundred twenty-nine (58.6%) patients who had lost their vision in one eye due to glaucoma were included as cases and 67 (30.4%) patients who had lost their vision due to other causes were taken as controls. Results: Median composite score of subscales was 54.62 (29.7-74.7) in group 1 and 45.38 (23.7-76.7) in group 2. The psychosocial impact scale was the most affected scale, the median scores were 33.02 (0 to 60.0) and 19.07 (0 to 53.0) in groups 1 and 2, respectively. Among all dimensions of IND-VFQ, the highest score was for color vision 100.0 (0-100.0) and 100.0 (0-100.0), and the lowest median score was found in mental health and dependency in both the groups. Multiple linear regression analysis demonstrated that visual acuity was associated with a low score (P < 0.001). Female gender was significantly associated with the overall score in the univariate model (P = 0.006). Conclusion: Monocular glaucoma patients have a poor general and vision-related quality of life. Depression associated with monocularity and the perception of dependency and being a burden on their family members greatly impacted the mental health of the participants.


Assuntos
Glaucoma , Qualidade de Vida , Humanos , Feminino , Qualidade de Vida/psicologia , Estudos Transversais , Estudos Prospectivos , Perfil de Impacto da Doença , Glaucoma/diagnóstico , Inquéritos e Questionários
15.
Pediatr Blood Cancer ; 70(8): e30479, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-37269496

RESUMO

INTRODUCTION: Childhood retinoblastoma (RB) survivors are known to experience long-term morbidity; however, eye-related quality of life (QoL), which may significantly impact activities of daily living (ADL), has not been extensively studied in this population. The purpose of this cross-sectional study was to assess QoL and ADL morbidity among school-age RB survivors. METHODS: The Pediatric Eye Questionnaire (PedEyeQ) and Roll Evaluation Activities of Life (REAL) were administered to childhood RB survivors between ages 5 and 17 followed at St. Louis Children's Hospital. Visual outcomes and demographic predictors of ADL and QoL were examined. RESULTS: Total 23 patients (mean age 9.6 years) consented for participation in this study. All children experienced at least one domain on the PedEyeQ ≤ 80%. Subjects and parents marked functional vision to be the most impacted domain with a median score of 82.5 and 83.4, respectively. Only 10.5% of participants scored above 75% on the ADL percentile rank. On multivariable analysis, decreased visual acuity (VA) was associated with worse "Child Functional" (odds ratio [OR] -59.2, p = .004) and "Parent Worry Function" (OR -66.5, p = .03) metrics. Decreased contrast sensitivity was associated with worse "Parent Impact" (OR 21.0, p = .02) and "Parent Worry Function" (OR 3.70, p = .04) metrics. Longer saccade horizontal latency was associated with a worse "Parent Worry Function" metric (OR 43.0, p = .009). On multivariable analysis, no variable was significantly associated with ADL. CONCLUSION: RB survivors have impaired QoL and ADL. Screening for such difficulties should strongly be considered for all RB patients. Additional studies may help predict morbidity based on visual metrics and demographic data.


Assuntos
Neoplasias da Retina , Retinoblastoma , Humanos , Criança , Qualidade de Vida , Atividades Cotidianas , Estudos Transversais , Perfil de Impacto da Doença , Inquéritos e Questionários
16.
Am J Ophthalmol ; 252: 295-305, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37142176

RESUMO

PURPOSE: To evaluate the association between baseline severity of visual field (VF) damage and the initial rates of VF progression with quality of life (QOL) outcomes over an extended follow-up in glaucoma. DESIGN: Retrospective cohort study. METHODS: Both eyes of 167 glaucoma or suspected glaucoma patients were followed for 10.0±0.3 years. The National Eye Institute Visual Function Questionnaire (NEI-VFQ)-25 was performed at the end of the follow-up. Separate linear regression models included the VF parameters of the better eye, the worse eye, and the central and peripheral points of the integrated binocular VF to evaluate the association of baseline and initial rates of change of VF parameters (first half of the follow-up) with NEI-VFQ-25 Rasch-calibrated disability scores over an extended follow-up. RESULTS: All models demonstrated association of worse baseline severity of VF damage with worse subsequent NEI-VFQ-25 scores. Faster rates of decline in VF mean deviation of the better eye and the mean sensitivity of the central and peripheral test locations of the integrated binocular VF were significantly associated with worse subsequent NEI-VFQ-25 scores. VF parameters of the better eye performed better than those of the worse eye (R2 of 0.21, and 0.15, respectively), and the VF parameters of the central test locations performed better than those of the peripheral test locations (R2 of 0.25, and 0.20, respectively). CONCLUSIONS: Baseline severity and initial rates of change of VF damage are associated with QOL outcomes over an extended follow-up. Assessment of longitudinal VF changes, especially in better eye, provides prognostic utility to identify glaucoma patients at a higher risk for developing disease-related disability.


Assuntos
Glaucoma , Qualidade de Vida , Humanos , Campos Visuais , Estudos Retrospectivos , Perfil de Impacto da Doença , Pressão Intraocular , Estudos Prospectivos , Glaucoma/diagnóstico , Testes de Campo Visual , Transtornos da Visão/diagnóstico , Inquéritos e Questionários
17.
BMC Ophthalmol ; 23(1): 185, 2023 Apr 26.
Artigo em Inglês | MEDLINE | ID: mdl-37101193

RESUMO

BACKGROUND: Patients with strabismus are more likely to have mental health problems, including high rates of depressive symptoms and social phobia. Intermittent exotropia (IXT) typically occurs in early childhood and is more common in Asian populations. We aim to assess the health-related quality of life (HRQOL) concerns in children with intermittent exotropia (IXT) using the Intermittent Exotropia Questionaire (IXTQ), and their associations with the clinical severity of IXT and the parents' HRQOL concerns. METHODS: IXT, defined as both distance and near exodeviation ≥ 10 prism diopters were eligible for inclusion. The final IXTQ score is calculated using the mean score for all items, and ranges from 0 (worst HRQOL) to 100 (best HRQOL). The correlations of child IXTQ scores with their deviation angle and stereoacuity were measured, as were those with their parent's IXTQ scores. RESULTS: One hundred twenty-two children with IXT (aged 5-17 years) and one parent for each child completed the child and parent IXTQ, respectively. The greatest HRQOL concern for each child with IXT and their parent was "Worry about eyes" (frequency 88%, score 35.0 ± 27.8). Lower child IXTQ scores were associated with a larger distance (r = 0.24, p = 0.007) and near deviation angle (r = 0.2, p = 0.026). "It bothers me because I have to wait for my eyes to clear up" and "Waiting for their eyes to clear up" were more common in children with a larger deviation angle (both p < 0.05). The parent IXTQ scores (52.1 ± 25.3) were lower than the child ones (79.7 ± 15.8) and showed a positive correlation with child IXTQ scores (r = 0.26, p = 0.004). Lower parent IXTQ scores were associated with poor distance stereoacuity (r = 0.23, p = 0.01). CONCLUSION: The HRQOL of IXT children was positively related to that of their parents. A larger deviation angle and worse distance stereoacuity function may predict more-negative impacts on children and their parents, respectively.


Assuntos
Exotropia , Qualidade de Vida , Criança , Humanos , Pré-Escolar , Qualidade de Vida/psicologia , Exotropia/diagnóstico , Perfil de Impacto da Doença , Nível de Saúde , Pais/psicologia , República da Coreia/epidemiologia
18.
Eye (Lond) ; 37(13): 2736-2743, 2023 09.
Artigo em Inglês | MEDLINE | ID: mdl-36697902

RESUMO

BACKGROUND/OBJECTIVES: To examine the risk factors for poor vision-related and health-related quality of life (QoL) in patients with neovascular age-related macular degeneration (nAMD) who present for anti-vascular endothelial growth factor (anti-VEGF) therapy. METHODS: In a clinic-based cohort of 547 nAMD patients who presented for treatment, the National Eye Institute Visual Function Questionnaire-25 (NEI-VFQ25), Short-Form 36 (SF-36) and EuroQoL EQ-5D-5L questionnaires were administered to assess vision-related and health-related QoL. Of these, 83 participants were followed up one-year later to provide longitudinal data. RESULTS: Individuals with mild or moderate visual impairment or blindness at baseline had significantly lower NEI-VFQ-25 scores at follow-up. The presence of ≥3 chronic diseases was associated with lower SF-36 mental component scores (MCS) (p = 0.04) and EQ-VAS scores (p = 0.05). Depressive symptoms were associated with significantly lower MCS (p < 0.0001) and EQ-VAS scores (p = 0.02). Individuals with versus without impaired basic activities of daily living (ADLs) exhibited NEI-VFQ-25 and EQ-VAS scores that were 10.96 (p = 0.03) and 0.13 (p = 0.02) points lower. Those with impaired instrumental ADLs scored 11.62 (p = 0.02), 13.13 (p < 0.0001) and 15.8 (p = 0.0012) points lower in the NEI-VFQ-25, SF-36 physical component score and EQ-5D-5L summary score, respectively. CONCLUSIONS: The QoL of nAMD patients is affected by visual acuity as well as patients' medical history, mental health and functional status.


Assuntos
Degeneração Macular , Qualidade de Vida , Humanos , Qualidade de Vida/psicologia , Atividades Cotidianas , Visão Ocular , Inquéritos e Questionários , Fatores de Risco , Perfil de Impacto da Doença
19.
Occup Ther Health Care ; 37(3): 426-443, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-34971349

RESUMO

This pilot study was designed to investigate the effects of a holistic lighting intervention on the quality of life for individuals with low vision. Sixty participants (44 women; median age 69 years) with visual impairment received lighting interventions, including a home visit and consultation in a lighting lab. Assisted by low vision consultants, participants evaluated their performance using the Canadian Occupational Performance Measure (COPM) before and after the intervention. Improvements in visual functioning and quality of life were evaluated using the 39-item National Eye Institute Visual Function Questionnaire (NEI VFQ-39), the Groffman Visual Tracing Test, and the Farnsworth Dichotomous Test (D15). Following the lighting intervention, scores improved for all activities in the COPM (p < 0.01), for near activities and vision-specific role difficulties in the VFQ-39 (p < 0.05), and overall in the D15 test (p < 0.05). These results suggest the intervention provided an effective method for improving the participants' quality of life and performance.


Assuntos
Terapia Ocupacional , Baixa Visão , Humanos , Feminino , Idoso , Qualidade de Vida , Iluminação , Projetos Piloto , Acuidade Visual , Canadá , Transtornos da Visão , Inquéritos e Questionários , Perfil de Impacto da Doença
20.
Br J Ophthalmol ; 107(8): 1086-1091, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-35379597

RESUMO

AIMS: To evaluate the psychometric properties of a newly designed questionnaire, the 40-item Glaucoma Visual Functioning Questionnaire (GVFQ-40), in a Chinese sample to capture the visual ability of patients with glaucomatous vision impairment in five domains. METHODS: Eighty-four glaucoma suspects (controls) and 270 glaucoma patients were recruited from the Glaucoma Clinic at Zhongshan Ophthalmic Centre in this cross-sectional, observational study. All subjects completed two questionnaires during routine clinical visits: the GVFQ-40 and the validated National Eye Institute Visual Functioning Questionnaire-25 (NEI VFQ-25). The discriminant, criterion-related and construct validity of the GVFQ-40 were assessed. A subset of subjects completed the GVFQ-40 twice, with an interval of 7-21 days, to determine test-retest reliability. RESULTS: Domain-specific and total GVFQ-40 scores were significantly higher (worse visual ability) in glaucoma patients than in controls (all p<0.001). All pairwise subgroup comparisons were statistically significant except for the 'mobility' domain comparison between the mild visual field loss and control groups (p=0.189). Significant differences between these two groups were observed in only 2 of the 12 dimensions on the NEI VFQ-25. The GVFQ-40 results demonstrated strong correlations with better-eye mean deviation and Visual Field Index (glaucoma severity measures). Exploratory factor analysis tended to confirm a three-domain structure. Test-retest intraclass correlation coefficients were higher than 0.927 for domain-specific and total GVFQ-40 scores. CONCLUSIONS: The GVFQ-40 possesses good validity and reliability. It can be used to evaluate the impact of glaucomatous damage on visual ability and has potential in the evaluation of intervention efficacy. TRIAL REGISTRATION NUMBER: NCT04722861.


Assuntos
Glaucoma , Estrabismo , Humanos , Reprodutibilidade dos Testes , Estudos Transversais , Qualidade de Vida , Glaucoma/diagnóstico , Transtornos da Visão/diagnóstico , Inquéritos e Questionários , Perfil de Impacto da Doença
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