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Health Qual Life Outcomes ; 19(1): 190, 2021 Jul 31.
Artigo em Inglês | MEDLINE | ID: mdl-34332592


BACKGROUND: The short form of the Stroke Impact Scale (SF-SIS) consists of eight questions and provides an overall index of health-related quality of life after stroke. The goal of the study was the evaluation of construct validity, reliability and responsiveness of the SF-SIS for the use in German-speaking stroke patients in rehabilitation. METHODS: The SF-SIS, the Stroke Impact Scale 2.0 (SIS 2.0), EQ-5D-5L, National Institutes of Health Stroke Scale (NIHSS) and de Morton Mobility Index were assessed in 150 inpatients after stroke, with a second measurement two weeks later for the analyses of responsiveness. In 55 participants, the test-retest-reliability was assessed one week after the first measurement. The study was designed following the recommendations of the COSMIN initiative. RESULTS: The correlations of the SF-SIS with the SIS 2.0 (ρ = 0.90), as well as the EQ-5D-5L (ρ = 0.79) were high, as expected. There was adequate discriminatory ability of the SF-SIS index between patients who were less and more severely affected by stroke, as assessed by the NIHSS. Exploratory factor analysis indicated a two-factor structure of the SF-SIS explaining 59.9% of the total variance, providing better model fit in the confirmatory factor analysis than the one-factorial structure. Analyses of test-retest-reliability showed an intraclass correlation coefficient of 0.88 (95% CI 0.75-0.94). Hypotheses concerning responsiveness were not confirmed due to lower correlations between the assessments change scores. CONCLUSION: Results of this analysis of the SF-SIS's psychometric properties are matching with the validity analysis of the English original version, confirming the high correlations with the Stroke Impact Scale and the EQ-5D-5L. Examination of structural validity did not confirm the presumed unidimensionality of the scale and found evidence of an underlying two-factor solution with a physical and cognitive domain. Sufficient test-retest reliability and internal consistency were found. In addition, this study provides first results for the responsiveness of the German version. Trial registration The study was registered at the German Clinical Trials Register. TRIAL REGISTRATION NUMBER: DRKS00011933, date of registration: 07.04.2017.

Qualidade de Vida/psicologia , Reabilitação do Acidente Vascular Cerebral , Acidente Vascular Cerebral/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Psicometria , Reprodutibilidade dos Testes , Perfil de Impacto da Doença , Acidente Vascular Cerebral/diagnóstico , Inquéritos e Questionários , Sobreviventes
Orphanet J Rare Dis ; 16(1): 294, 2021 07 02.
Artigo em Inglês | MEDLINE | ID: mdl-34215312


BACKGROUND: Tenosynovial Giant-Cell Tumour (TGCT) is a benign clonal neoplastic proliferation arising from the synovium, causing a variety of symptoms and often requiring repetitive surgery. This study aims to define the economic burden-from a societal perspective-associated with TGCT patients and their health-related quality of life (HRQOL) in six European countries. METHODS: This article analyses data from a multinational, multicentre, prospective observational registry, the TGCT Observational Platform Project (TOPP), involving hospitals and tertiary sarcoma centres from six European countries (Austria, France, Germany, Italy, the Netherlands, and Spain). It includes information on TGCT patients' health-related quality of life and healthcare and non-healthcare resources used at baseline (the 12-month period prior to the patients entering the registry) and after 12 months of follow-up. RESULTS: 146 TGCT patients enrolled for the study, of which 137 fulfilled the inclusion criteria. Their mean age was 44.5 years, and 62% were female. The annual average total costs associated with TGCT were €4866 at baseline and €5160 at the 12-month follow-up visit. The annual average healthcare costs associated with TGCT were €4620 at baseline, of which 67% and 18% corresponded to surgery and medical visits, respectively. At the 12-month follow-up, the mean healthcare costs amounted to €5094, with surgery representing 70% of total costs. Loss of productivity represented, on average, 5% of the total cost at baseline and 1.3% at follow-up. The most-affected HRQOL dimensions, measured with the EQ-5D-5L instrument, were pain or discomfort, mobility, and the performance of usual activities, both at baseline and at the follow-up visit. Regarding HRQOL, patients declared a mean index score of 0.75 at baseline and 0.76 at the 12-month follow-up. CONCLUSION: The results suggest that TGCT places a heavy burden on its sufferers, which increases after one year of follow-up, mainly due to the healthcare resources required-in particular, surgical procedures. As a result, this condition has a high economic impact on healthcare budgets, while the HRQOL of TGCT patients substantially deteriorates over time.

Efeitos Psicossociais da Doença , Qualidade de Vida , Adulto , Áustria , Cuidadores , Estudos Transversais , Europa (Continente) , Feminino , França , Alemanha , Custos de Cuidados de Saúde , Humanos , Itália , Masculino , Pessoa de Meia-Idade , Países Baixos , Assistência ao Paciente , Sistema de Registros , Perfil de Impacto da Doença , Fatores Socioeconômicos , Espanha , Inquéritos e Questionários
Artigo em Inglês | MEDLINE | ID: mdl-33923803


The Visual Functioning-14 (VF-14) scale is the most widely employed index of vision-related functional impairment and serves as a patient-reported outcome measure in vision-specific quality of life. The purpose of this study is to rigorously examine and validate the VF-14 scale on a Greek population of ophthalmic patients employing Rasch measurement techniques. Two cohorts of patients were sampled in two waves. The first cohort included 150 cataract patients and the second 150 patients with other ophthalmic diseases. The patients were sampled first while pending surgical or other corrective therapy and two months after receiving therapy. The original 14-item VF-14 demonstrated poor measurement precision and disordered response category thresholds. A revised eight-item version, the VF-8G ('G' for 'Greek'), was tested and confirmed for validity in the cataract research population. No differential functioning was reported for gender, age, and underlying disorder. Improvement in the revised scale correlated with improvement in the mental and physical component of the general health scale SF-36. In conclusion, our findings support the use of the revised form of the VF-14 for assessment of vision-specific functioning and quality of life improvement in populations with cataracts and other visual diseases than cataracts, a result that has not been statistically confirmed previously.

Qualidade de Vida , Perfil de Impacto da Doença , Grécia , Humanos , Psicometria , Reprodutibilidade dos Testes , Inquéritos e Questionários , Acuidade Visual
J AAPOS ; 25(2): 80.e1-80.e4, 2021 04.
Artigo em Inglês | MEDLINE | ID: mdl-33705917


PURPOSE: To determine whether health-related quality of life (HRQOL) scores improved or worsened over 3 years of observation in childhood intermittent exotropia without treatment. METHODS: A total of 111 children aged 3-11 years with intermittent exotropia were assigned to observation in a previously reported randomized trial comparing patching with observation. The intermittent exotropia questionnaire (IXTQ) was administered at baseline, 6 months, and 36 months. Rasch-calibrated IXTQ domain scores (Child, Proxy, Parent-psychosocial, Parent-function, and Parent-surgery) were compared between time points. The Child IXTQ was administered only to children ≥5 years of age (n = 78). RESULTS: Overall, Child IXTQ and Proxy IXTQ scores showed no significant change over 36 months (mean improvement from baseline to 36 months of 3.2 points [95% CI, -1.9 to 8.2] and -2.4 points [95% CI: -7.9 to 3.1], resp.). By contrast, Parent-psychosocial, Parent-function, and Parent-surgery domain scores all improved over 36 months (mean improvements of 12.8 points [95% CI, 5.9-19.6] and 14.2 points [95% CI, 8.0-20.3] and 18.5 points [95% CI, 9.7-27.3], resp.). CONCLUSIONS: HRQOL of children with intermittent exotropia remains stable with observation over 3 years (by both child and proxy report), whereas parental HRQOL improves.

Exotropia , Qualidade de Vida , Criança , Nível de Saúde , Humanos , Pais , Perfil de Impacto da Doença , Inquéritos e Questionários
Gerokomos (Madr., Ed. impr.) ; 32(1): 2-7, mar. 2021. tab, graf
Artigo em Espanhol | IBECS | ID: ibc-202040


OBJETIVO: analizar la relación entre las variables sociodemográficas y clínicas en pacientes con deterioro cognitivo en función del lugar de residencia (domicilio familiar frente a instituciones), comparándola con la autopercepción del estado de salud de ambos grupos. MATERIAL Y MÉTODOS: estudio comparativo observacional transversal. La muestra estuvo formada por 71 sujetos, de los cuales 44 recibían cuidado informal en su domicilio y asistían a un centro de día (Valencia, España), y 27 que residían en un centro sociosanitario (Teruel, Valencia), ambos situados en zona rural. Los participantes fueron evaluados mediante el índice de comorbilidad de Charlson, Mini-Mental Test de Folstein (MMSE), test de fluidez verbal, autopercepción del estado de salud mediante escala visual analógica del Euro-Qol y variables sociodemográficas que incluyeron: sexo, edad, nivel de estudios, estado civil y número de hijos. RESULTADOS: los principales resultados apuntan a que pese a que los pacientes que residen en sus hogares tienen un peor estado cognitivo en relación con el MMSE (diferencia de 3,09 puntos; p = 0,003) y la fluidez verbal (diferencia de 3,05 puntos 5,32; p = 0,000), su autopercepción del estado de salud es superior frente a aquellos que viven en un centro sociosanitario (diferencia de 21,22 puntos; p = 0,000). CONCLUSIONES: los sujetos que residen en el domicilio presentan una autopercepción de su estado de salud mejor que aquellos que residen en el centro sociosanitario, pese a que su estado cognitivo muestra peores resultados. Este aspecto contribuye a la mejora de la utilización de los recursos necesarios hacia los ámbitos donde los cuidados sean más eficaces

OBJECTIVE: analyze the relationship between sociodemographic and clinical variables in patients with cognitive impairment regarding to the place of residence (family home versus institutions), compare their self-perception of health status. MATERIAL AND METHOD: observational comparative study. The sample was formed by 71 participants; 44 of them were living in their homes and attended to a day center and 27 of them resided in a Social Health Center. Participants were evaluated using the Charlson comorbidity index, Folstein Mini Mental Test (MMSE), verbal fluency test, self-perception of health status using Euro-Qol visual analogue scale and sociodemographic variables included: sex, age, level of studies, marital status and number of children. RESULTS: the main results suggest that patients residing in their homes have a worse cognitive state compared to those who lived in Social Health Centers in relation to the MMSE (difference of 3,09 points, p = 0,003) and verbal fluency (difference of 3,05 points 5,32, p = 0,000). However, their self-perception of health status was higher (difference of 21,22 points, p = 0,000). CONCLUSIONS: patients with cognitive dysfunction who reside in their homes have a better self-perception of their health status compared to those who reside in the Social Health Center. This aspect is of relevance to the improvement of the development of cost-effective strategies that encourage the health of patients with cognitive diseases

Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou mais , Nível de Saúde , Qualidade de Vida/psicologia , Disfunção Cognitiva/psicologia , Características de Residência/classificação , Autonomia Pessoal , Autoimagem , Autorrelato , Perfil de Impacto da Doença , Instituição de Longa Permanência para Idosos/estatística & dados numéricos , Saúde do Idoso Institucionalizado , Testes de Estado Mental e Demência/estatística & dados numéricos
Rev. Bras. Saúde Mater. Infant. (Online) ; 21(1): 271-280, Jan.-Mar. 2021. tab, graf
Artigo em Inglês | LILACS | ID: biblio-1250686


Abstract Objectives: to describe life quality of women with HPV and analyze the accuracy of anal visual inspection with acetic acid and lugol compared to high-resolution anoscopy in the detection of anal intraepithelial lesions. Methods: diagnostic evaluation study conducted with adult solid-organ transplant recipients and/or diagnosed with HIV and/or with a history of anogenital neoplasia, attended at the High Resolution Anoscopy outpatient clinic between April and December 2018. To calculate the accuracy parameters, 87 women participated: 44 with lesions and 43 without them. The 44 women with lesions were also subjected to a descriptive study to assess their life quality using the SF-36 questionnaire. Results: it was observed that almost half of the women in the study practiced vaginal, anal and oral intercourse without condom. History of HPV infection and anogenital neoplasia were the most prevailing with percentages of 81% and 72.7%, respectively. In five out of the eight domains of SF-36 they did not perform well in regard to life quality. Visual inspection with acetic acid and lugol presented sensitivity of 22.7% and specificity of 100%. Conclusion: unsatisfactory life quality was evidenced. Direct visual inspection with acetic acid and lugol should not be used in trials to spot intraepithelial HPV lesions, for it presents low sensitivity.

Resumo Objetivos: descrever a qualidade de vida das mulheres com HPVe analisar aacurácia da inspeção visual anal com ácido acético e lugol comparada à anuscopia de alta resolução para detecção de lesão intraepitelial anal. Métodos: estudo de avaliação diagnostica realizado com mulheres adultas transplantadas de órgãos sólidos e/ou diagnosticadas com HIV e/ou com antecedente de neoplasia anogenital, atendidas no ambulatório de AAR entre abril e dezembro de 2018. Para cálculo dos parâmetros de acurácia, participaram 87 mulheres: 44 com lesões e 43 sem lesões. Das 44 mulheres com lesão, também foi realizado um estudo descritivo para a avaliar a qualidade de vida utilizando-seo questionário SF-36. Resultados: Observou-se que quase metade das mulheres do estudo são adeptas ao intercurso vaginal, anal e oralesem preservativo. Os antecedentes de infecção pelo HPV e neoplasia anogenital foram os mais prevalentes com valores de 81% e 72, 7% respectivamente. Cinco, dos oito domínios do SF-36, não apresentaram boa performance em relação à qualidade de vida. A inspeção visual com ácido acético e lugol apresentou sensibilidade de 22,7%o e especificidade de 100,0%o. Conclusão: evidenciou-se qualidade de vida insatisfatória. A inspeção visual anal direta com ácido acético e lugol não deve ser usada na triagem de lesões intraepiteliais por HPV, pois apresenta baixa sensibilidade.

Humanos , Feminino , Neoplasias do Ânus/diagnóstico , Qualidade de Vida , Infecções por HIV/diagnóstico , Triagem , Perfil de Impacto da Doença , Lesões Intraepiteliais Escamosas/diagnóstico por imagem , Ácido Acético
Fisioterapia (Madr., Ed. impr.) ; 43(1): 19-29, ene.-feb. 2021. tab, graf
Artigo em Espanhol | IBECS | ID: ibc-202435


INTRODUCCIÓN: La Global Obstructive Lung Disease (GOLD) anualmente actualiza la guía para manejo de la EPOC, introduciendo cambios en la clasificación por letras, evaluación de síntomas o severidad de la obstrucción. Esto ha motivado el interés en indagar sobre las diferencias entre grupos en variables clínicas, calidad de vida relacionada con la salud (CVRS) y capacidad funcional. OBJETIVO: Determinar las diferencias en variables clínicas, supervivencia, de capacidad funcional, de ansiedad/depresión y CVRS en pacientes con enfermedad pulmonar obstructiva crónica (EPOC) de acuerdo a la clasificación GOLD 2018 en una clínica de Cali. MÉTODOS: Estudio observacional, analítico y transversal; se incluyeron 128 pacientes con diagnóstico de EPOC divididos en 3 grupos: GOLD-B, GOLD-C y GOLD-D. RESULTADOS: La edad media de los grupos fue 71 años y el 61% eran hombres. Las hospitalizaciones fueron más prevalentes en el grupo GOLD-C y GOLD-D, con 100% y 86% respectivamente, valor p < 0,001, con diferencias significativas en la supervivencia p < 0,001. La capacidad funcional evidenció una mayor distancia en el grupo GOLD-C con 344m y la menor distancia para el grupo GOLD-B con 271m, encontrando diferencia estadísticamente significativa. No se encontraron diferencias estadísticamente significativas en la ansiedad y la depresión. Al comparar los 3 grupos los pacientes GOLD-C tenían mejor CVRS en el cuestionario SGRQ; media de 37±15, GOLD-B de 45±16 y GOLD-D 55±15, con valor p = 0,002. CONCLUSIÓN: El grupo GOLD-C presentó mayor superviviencia, capacidad funcional y calidad de vida; por otra parte el grupo GOLD-D tuvo peor condición clínica, capacidad funcional y calidad de vida

INTRODUCTION: The Global Obstructive Lung Disease (GOLD) annually updates the COPD management guide, introducing changes in letter classification, symptom assessment, or severity of obstruction. This has motivated interest in investigating differences among groups in clinical variables, quality of life related to health (QOLRH) and functional capacity. OBJECTIVE: To determine the differences in clinical variables, survival, functional capacity, anxiety/depression and QOLRH in patients with chronic obstructive pulmonary disease (COPD) according to the GOLD 2018 classification in a Clinic in Cali (Colombia). METHODS: An observational, analytical and cross-sectional study including 128 patients (61% men) with a mean age of 71 years and diagnosis of COPD divided into three groups; GOLD-B, GOLD-C and GOLD-D. RESULTS: Hospitalizations were more prevalent in the GOLD-C and GOLD-D groups at 100% and 86% respectively, p value <.001, with significant differences in survival P<.001. Group GOLD-C showed greater functional capacity at 344 meters with a shorter distance for group GOLD-B at 271m, a statistically significant difference was found. No statistically significant differences were found in anxiety and depression. When comparing the three groups the GOLD- C patients had better QOLRH in the SGRQ questionnaire; mean of 37±15, (GOLD-B) of 45±16 and GOLD-D 55±15 with a P value=.002. CONCLUSION: Group GOLD-C showed greater survival, functional capacity and quality of life and GOLD-D had worse clinical condition, functional capacity and quality of life

Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Idoso de 80 Anos ou mais , Doença Pulmonar Obstrutiva Crônica/reabilitação , Ansiedade/epidemiologia , Depressão/epidemiologia , Exercícios Respiratórios/estatística & dados numéricos , Capacidade Residual Funcional/fisiologia , Testes de Função Respiratória/estatística & dados numéricos , Qualidade de Vida/psicologia , Perfil de Impacto da Doença , Progressão da Doença , Exacerbação dos Sintomas , Estudos Transversais , Doença Pulmonar Obstrutiva Crônica/psicologia
Orv Hetil ; 162(7): 269-279, 2021 02 14.
Artigo em Húngaro | MEDLINE | ID: mdl-33582650


Összefoglaló. Bevezetés: A kutatócsoport 99 fo, cerebralis paresisben (CP) szenvedo gyermek (8-18 éves) önállóan közölt életminoségét értékelte, és az eredményeket összehasonlította egy 237 fos kontrollcsoport adataival, amelyek hasonló életkorú, egészséges általános populációhoz tartozó gyermekektol származtak. Célkituzés: A kutatás célja annak megismerése volt, hogy a CP-ben szenvedo gyermekek hogyan vélekednek egészségi állapotukról és társadalmi helyzetükrol. Módszer: Életminoség-kérdoív alkalmazása. Betegségspecifikus és társadalmi-demográfiai mutatók mérése, kiértékelése. Eredmények: Az CP-ben szenvedo gyermekek és szüleik az egészséggel kapcsolatos életminoséget rosszabbnak ítélték meg, mint társaik. Eredményeink azt mutatják, hogy a noi nem, a rosszabb motoros funkció és a komorbiditások (epilepszia, incontinentia és intellektuális károsodás) negatív hatású. A szüloi vélemény alkalmas volt proxyjelentésként a korreláció mért erossége miatt. Figyelemre méltó, hogy az agyi bénulás típusai közül az egyoldali spasticus CP-ben szenvedo gyermekek életminoség-értéke a legalacsonyabb. A válaszadók valószínuleg a test két oldala között lévo funkcionális különbséget érezték. A szellemi fogyatékosság a betegpopuláció több mint felénél fordult elo. Testvéreik között a mentális betegség 5,7-szer gyakoribb. A CP-s gyerekek családi környezete sokkal hátrányosabb volt, mint az egészséges gyermekeké. A kutatás eredményei alapján megállapítható, hogy a szülo alacsonyabb iskolai végzettsége és munkaeropiaci inaktivitása, valamint az egyszülos család a CP-s gyerekeknél szignifikánsan magasabb arányban fordult elo, és ezek a tényezok negatív hatást gyakoroltak az életminoségre. Következtetés: A fogyatékkal élo gyermekek életminoségét a betegség és a szociodemográfiai környezet egyaránt befolyásolja. Orv Hetil. 2021; 162(7): 269-279. INTRODUCTION: Self-reported health-related quality of life (HRQoL) of 99 children (8-18 years) with cerebral palsy (CP) was assessed and compared with 237, age-matched healthy control children from the general population. OBJECTIVE: The aim was to find out the opinions of children with CP about their health status and social condition. METHOD: Assessment of quality of life questionnaire was carried out. Measurements of disease-specific and sociodemographic variables were done. RESULTS: Children with CP and their parents rated HRQoL poorer than their counterparts. Our results show that female sex, worse gross motor function and comorbidities (epilepsy, incontinence and intellectual impairment) had negative impact. The parental opinion was suitable as proxy report because of the measured strength of the correlation. Among the types of CP, interestingly, children with unilateral spastic CP had the poorest HRQoL. They were likely to feel a functional difference between the two sides of the body. Intellectual disability occurred in more than half of our patient population. Among their siblings, mental illness is 5.7 times more common. The family environment was much more disadvantageous than in the case of healthy children. As our study shows, lower education, inactive status in the labour market and single-parent family occurred at a much higher rate and worsened the quality of life. CONCLUSION: Quality of life of children with disability was influenced by both the sociodemographic background and the disease. Orv Hetil. 2021; 162(7): 269-279.

Paralisia Cerebral/psicologia , Efeitos Psicossociais da Doença , Qualidade de Vida/psicologia , Fatores Socioeconômicos , Criança , Feminino , Humanos , Masculino , Perfil de Impacto da Doença , Inquéritos e Questionários
Neurología (Barc., Ed. impr.) ; 36(1): 39-49, ene.-feb. 2021. tab
Artigo em Espanhol | IBECS | ID: ibc-200445


INTRODUCCIÓN: El conocimiento del alcance socioeconómico de las enfermedades que cursan con demencia es esencial para la planificación de recursos y la concienciación social. DESARROLLO: Se ha realizado una revisión de los datos publicados hasta el momento sobre la epidemiología, morbilidad, mortalidad, discapacidad, dependencia e impacto económico de la demencia y la enfermedad de Alzheimer en España. CONCLUSIONES: La mayoría de estudios en población mayor de 65 años estiman una prevalencia entre el 4% y el 9%. La prevalencia es mayor en mujeres en casi todos los grupos de edad. La enfermedad de Alzheimer es la causa de demencia más frecuente (50-70% del total). La demencia provoca un aumento de la morbilidad, mortalidad, discapacidad y dependencia de los pacientes, con una importante disminución de la calidad de vida y la supervivencia. El 80% de los enfermos es cuidado por sus familias, que asumen de media el 87% del coste total, con la consiguiente sobrecarga y menoscabo de la salud y calidad de vida de los cuidadores. El impacto económico de la demencia es enorme, y de evaluación compleja, por la mezcla de costes sanitarios y no sanitarios, directos e indirectos. Es necesario desarrollar programas globales e incrementar los recursos enfocados a fomentar la investigación, prevención, diagnóstico precoz, tratamiento multidimensional y abordaje multidisciplinario, que permitan reducir la carga sanitaria, social y económica de la demencia

INTRODUCTION: Knowledge of the socioeconomic impact of dementia-related disorders is essential for appropriate management of healthcare resources and for raising social awareness. METHODS: We performed a literature review of the published evidence on the epidemiology, morbidity, mortality, associated disability and dependence, and economic impact of dementia and Alzheimer disease (AD) in Spain. CONCLUSIONS: Most population studies of patients older than 65 report prevalence rates ranging from 4% to 9%. Prevalence of dementia and AD is higher in women for nearly every age group. AD is the most common cause of dementia (50%-70% of all cases). Dementia is associated with increased morbidity, mortality, disability, and dependence, and results in a considerable decrease in quality of life and survival. Around 80% of all patients with dementia are cared for by their families, which cover a mean of 87% of the total economic cost, resulting in considerable economic and health burden on caregivers and loss of quality of life. The economic impact of dementia is huge and difficult to evaluate due to the combination of direct and indirect costs. More comprehensive programmes should be developed and resources dedicated to research, prevention, early diagnosis, multidimensional treatment, and multidisciplinary management of these patients in order to reduce the health, social, and economic burden of dementia

Humanos , Masculino , Feminino , Perfil de Impacto da Doença , Doença de Alzheimer/fisiopatologia , Demência/fisiopatologia , Fatores Socioeconômicos , Qualidade de Vida , Espanha/epidemiologia , Doença de Alzheimer/epidemiologia , Efeitos Psicossociais da Doença
BMC Cancer ; 21(1): 99, 2021 Jan 27.
Artigo em Inglês | MEDLINE | ID: mdl-33499819


BACKGROUND: Health-related quality of life is mainly impacted by colorectal cancer which justified the major importance addressed to the development and validation of assessment questionnaires. We aimed to assess the validity and reliability of the Moroccan Arabic Dialectal version of the European Organization for Research and Treatment of Cancer (EORTC) Quality of Life Core Questionnaire (QLQ-C30) in patients with colorectal cancer. METHODS: We conducted a cross-sectional study using the Moroccan version of the EORTC QLQ-C30 on colorectal cancer patients from the National Oncology Institute of Rabat, in the period from February 2015 to June 2017. The QLQ-C30 was administered to 120 patients. Statistical analysis included reliability, convergent, and discriminant validity as well as known-groups comparisons. RESULTS: In total, 120 patients with colorectal cancer were included in the study with 38 (32%) patients diagnosed with colon cancers. Eighty-two patients (68%) had rectal cancer, among which 29 (24%) patients with a stoma. The mean age of diagnosis was 54 years (+/- 13.3). The reliability and validity of the Arabic dialectal Moroccan version of the EORTC QLQ-C30 were satisfactory. [Cronbach's alpha (α =0.74)]. All items accomplished the criteria for convergent and discriminant validity except for question number 5, which did not complete the minimum required correlation with its own scale (physical functioning). Patients with rectal cancer presented with bad Global health status and quality of life (GHS/QOL), emotional functioning as well as higher fatigue symptoms compared to patients with colon cancer. The difference between patients with and without stoma was significant for diarrhea and financial difficulty. CONCLUSIONS: The Moroccan Arabic Dialectal version of the QLQ-C30 is a valid and reliable measure of health-related quality of life (HRQOL) in patients with colorectal cancer.

Neoplasias Colorretais/psicologia , Psicometria , Qualidade de Vida , Perfil de Impacto da Doença , Adulto , Idoso , Idoso de 80 Anos ou mais , Neoplasias Colorretais/epidemiologia , Neoplasias Colorretais/patologia , Estudos Transversais , Feminino , Seguimentos , Humanos , Masculino , Pessoa de Meia-Idade , Marrocos/epidemiologia , Prognóstico , Estudos Retrospectivos , Inquéritos e Questionários
Medicine (Baltimore) ; 100(2): e24069, 2021 Jan 15.
Artigo em Inglês | MEDLINE | ID: mdl-33466164


ABSTRACT: To investigate the impact of different types of binocular integrated visual field defects on the quality of life in glaucoma.Ninety-six patients with primary glaucoma were divided into 5 groups with 25, 24, 11, 15, and 21 patients according to types of the binocular integrated visual field (BVF) defects. The criteria for BVF grouping included mild visual field defect in binocular eyes, mild visual field defect in 1 eye and moderate or advanced defect in the other, moderate and non-overlapping visual field defect in both eyes, overlapping and moderate visual field defect in binocular eyes, and severe defect in both eyes, respectively. The visual field (VF) evaluation was based on H-P-A visual field grading system. Visual acuity, visual field tests and Glaucoma Quality of Life-15 Questionnaire (GQL-15) were performed for enrolled patients, and binocular visual field results were integrated. The changes and correlations of the Visual field index values and quality of life scores were compared among the 5 groups. The main factors affecting the quality of life in glaucoma were analyzed by multiple regression analysis.The best binocular integrated visual field index (BVFI) and optimal quality of life were observed in group A. The BVFI of group B was better than that of group C or group D, but the peripheral vision glare and dark adaptation were worse. No significant difference was noted between group C and group D in terms of BVFI. However, the glare and dark adaptation in group C were better than that in group D. The BVFI was the lowest and the quality of life was the worst in group E. In all, BVFI and decibels (dB) values were negatively correlated with GQL-15 scores and positively correlated with patients' quality of life.Binocular integrated visual field accurately reflects the visual function in glaucoma. Higher binocular integrated visual field indices represent a better quality of life for patients with glaucoma. Mild to moderate synchronous or complementary binocular VF defects had a slight effect on the quality of life, while severe and non-compensated VF loss significantly impacts on quality of life in glaucoma patients.

Glaucoma/fisiopatologia , Qualidade de Vida/psicologia , Perfil de Impacto da Doença , Transtornos da Visão/psicologia , Visão Binocular , Idoso , Feminino , Glaucoma/complicações , Humanos , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Transtornos da Visão/etiologia , Acuidade Visual , Testes de Campo Visual , Campos Visuais
Psicol. educ. (Madr.) ; 27(1): 93-99, ene. 2021.
Artigo em Inglês | IBECS | ID: ibc-199713


The aim of the present study is to describe the behavioral and emotional disturbances in the Fragile X Syndrome (FXS) and to analize the impact of having a member with FXS on different aspects of family functioning. A sample of 79 parents with a member with FXS and 80 parents with a member with typical development participated in the study. Results showed that between 17% and 66% of children and adolescents with FXS displayed significant behavioral and emotional disturbances and fewer prosocial behaviors. In addition, after controlling for behavioral and emotional difficulties, our results showed that families affected by FXS experienced a more negative impact on feelings about parenting, finances, siblings, and the degree of difficulty of living with a child or adolescent with FXS, and greater family adaptability and cohesion than the comparison group. In conclusion, our results highlight that it is important to consider these differences in clinical practice when supporting and counselling families affected by FXS

El objetivo del presente estudio es describir las alteraciones conductuales y emocionales en el síndrome de X frágil (SXF) y analizar las reperecusiones de tener un miembro con SXF en diferentes aspectos del funcionamiento familiar. Participaron 79 padres con un miembro con SXF y 80 padres con un miembro con desarrollo típico. Los resultados mostraron que entre el 17% y el 66% de los niños y adolescentes con SXF mostraron trastornos conductuales y emocionales significativos y menos comportamientos prosociales. Además, después de controlar las dificultades emocionales y de comportamiento, nuestros resultados mostraron que las familias afectadas por SXF experimentaron un impacto más negativo en los sentimientos relativos a la crianza de los hijos, las finanzas, los hermanos y el grado de dificultad de vivir con un niño o adolescente con SXF y más capacidad de adaptación familiar y cohesión que el grupo de comparación. Como conclusión, nuestros resultados destacan que en la práctica clínica es importante tener en cuenta estas diferencias al apoyar y asesorar a las familias afectadas por SXF

Humanos , Masculino , Criança , Adolescente , Síndrome do Cromossomo X Frágil/psicologia , Família/psicologia , Comportamento Problema/psicologia , Sintomas Afetivos/psicologia , Comportamento do Adolescente/psicologia , Inquéritos e Questionários , Características da Família , Fatores Socioeconômicos , Perfil de Impacto da Doença
Enferm. glob ; 20(61): 265-273, ene. 2021. tab
Artigo em Espanhol | IBECS | ID: ibc-201463


OBJETIVO: Determinar la relación entre la depresión, ansiedad y función cognitiva con la dependencia en adultos mayores. MATERIAL Y MÉTODO: Estudio descriptivo y correlacional de corte transversal en 98 adultos mayores hospitalizados. Se aplicó la Escala Hospitalaria de Ansiedad y Depresión, el test de evaluación cognitiva de Montreal e Índice de Barthel. RESULTADOS: La edad, el género, la depresión, la ansiedad y la función cognitiva explican el 33% de la dependencia funcional. Las variables que influyen sobre la dependencia en las actividades básicas de la vida diaria fueron el género (p=.000), la depresión (p=.002) y la función cognitiva (p=.002). CONCLUSIONES: En la valoración de la funcionalidad del adulto mayor hospitalizado es importante considerar el género, la depresión y la función cognitiva

OBJECTIVE: Determine the relationship between depression, anxiety, and cognitive function with dependency in older adults. MATERIALS AND METHOD: Descriptive and correlational cross-sectional study conducted on 98 hospitalized older adults. The Hospital Anxiety and Depression Scale, the Montreal Cognitive Evaluation Test, and the Barthel Index were applied. RESULTS: Age, gender, depression, anxiety, and cognitive function explain 33% of functional dependency. The variables that influence dependence to carry out basic activities in daily life were gender (p = .000), depression (p = .002), and cognitive function (p =.002). CONCLUSIONS: In assessing the functionality of hospitalized older adults, gender, depression, and cognitive function are important to consider

Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Depressão/epidemiologia , Ansiedade/epidemiologia , Disfunção Cognitiva/epidemiologia , Pacientes Internados/psicologia , Fragilidade/epidemiologia , Questionário de Saúde do Paciente/estatística & dados numéricos , Hospitalização/estatística & dados numéricos , Atividades Cotidianas/psicologia , Perfil de Impacto da Doença , Estudos Transversais
AIDS Care ; 33(2): 159-166, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-31906703


Young perinatally-infected women living with HIV in Zambia grew up alongside antiretroviral therapy (ART) roll-out and expanding prevention programmes. We used Bonnington's temporal framework to understand how HIV impacted the experiences of these women over time. Data were drawn from two sequential studies with a cohort of young women living with HIV: a qualitative study in 2014-16 and an ethnographic study in 2017-18. Data from workshops, in-depth interviews, participant observation and diaries were analysed thematically, guided by three temporalities within the framework: everyday, biographical and epochal time. In everyday time, repetitive daily treatment-taking reminded young women of their HIV status, affecting relationships and leading to secrecy with ART. In biographical time, past events including HIV disclosure, experiences of illness, and loss shaped present experiences and future aspirations. Lastly, in epochal time, the women's HIV infection and their survival were intimately interlinked with the history of ART availability. The epochal temporal understanding leads us to extend Reynolds Whyte's notion of "biogeneration" to conceptualise these women, whose experiences of living with HIV are enmeshed with their biosocial environment. Support groups for young women living with HIV should help them to process biographical events, as well as supporting their everyday needs.

Adaptação Psicológica , Terapia Antirretroviral de Alta Atividade/métodos , Infecções por HIV/tratamento farmacológico , Infecções por HIV/psicologia , Adolescente , Envelhecimento , Feminino , Infecções por HIV/epidemiologia , Humanos , Entrevistas como Assunto , Masculino , Pesquisa Qualitativa , Perfil de Impacto da Doença , Revelação da Verdade , Adulto Jovem , Zâmbia/epidemiologia
Eye (Lond) ; 35(2): 508-516, 2021 02.
Artigo em Inglês | MEDLINE | ID: mdl-32555517


PURPOSE: To improve upon self-reported glaucoma status in population-based cohorts by developing a questionnaire-based proxy incorporating self-reported status in conjunction with glaucoma-specific visual complaints. METHODS: A vision specific questionnaire, including questions from the National Eye Institute Visual Functioning Questionnaire-25 (NEI-VFQ-25) was administered to 79,866 Lifelines participants, a population-based cohort study in the Northern Netherlands. We compared NEI-VFQ-25 responses between 'definite' glaucoma cases (n = 90; self-reported surgical cases) and an age- and gender-matched subset of controls (n = 1,800) to uncover glaucoma-specific visual complaints, using a case-control logistic regression. We defined 'probable glaucoma' as both self-reported disease status and visual complaints, and 'possible glaucoma' as either. To evaluate the resulting proxy, we determined age-stratified glaucoma prevalences in the remaining cohort and compared the result to the literature. RESULTS: Per unit increase in the vision subscales (range 0-100) distance, peripheral and low luminance, we observed significantly increased odds of definite glaucoma (2% [P = 0.03], 4% [P = 1.2 × 10-8] and 2% [P = 0.02], respectively); the associated area under the curve was 0.73. We identified 300 probable and 3,015 (1,434 by self-report) possible glaucoma cases. Standardised prevalences of definite, probable and possible glaucoma for 55+ were 0.4%, 1.1% and 7.3%, respectively. For self-reported glaucoma (combining definite, probable and possible by self-report), this was 5.2%. CONCLUSIONS: The combination of self-reported glaucoma status and visual complaints can be used to capture glaucoma cases in population-based settings. The resulting prevalence of combined definite and probable glaucoma (1.5%) appears to be more consistent with previous reports than the prevalence estimate of 5.2% based only on self-report.

Glaucoma , Transtornos da Visão , Estudos de Coortes , Glaucoma/epidemiologia , Humanos , Países Baixos/epidemiologia , Qualidade de Vida , Perfil de Impacto da Doença , Inquéritos e Questionários , Acuidade Visual
Cornea ; 40(1): 19-25, 2021 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-32482958


PURPOSE: The aim of this investigation was to study the patient-reported outcomes of patients with microbial keratitis (MK) using the 9-item National Eye Institute-Visual Function Questionnaire (NEI VFQ-9). METHODS: Using the Sight Outcomes Research Collaborative ophthalmology electronic health record repository, patients with MK and control patients who completed the NEI VFQ-9 within 7 days of their appointment were identified. The questionnaire is scored as a mean of the 9 items on a scale from 0 to 100, with higher scores indicating better functioning. Composite and individual item scores were compared between groups using the analysis of variance. RESULTS: In total, 916 questionnaires were completed from patients with acute MK (n = 84), nonacute MK (n = 30), MK with a corneal transplant (n = 21), from controls seen in a satellite comprehensive ophthalmology clinic (n = 528), and controls seen at a subspecialty ophthalmology clinic (n = 253). The mean NEI VFQ-9 composite scores per group were 66.6 (SD = 26.8), 78.1 (SD = 17.1), 58.6 (SD =21.6), 88.0 (SD = 10.2), and 83.5 (SD = 13.0), respectively (P < 0.0001). Both patients with acute MK and patients with MK requiring transplant reported significantly worse function than nonacute MK, comprehensive, and specialty patients. Patients with nonacute MK reported significantly worse function than comprehensive control patients (all Tukey-adjusted P < 0.05). DISCUSSION: Patients who had or eventually require corneal transplant for management of their MK report worse visual function than patients with nonacute MK. This may be important in helping physicians counsel their patients.

Infecções Oculares Bacterianas/psicologia , Ceratite/psicologia , Qualidade de Vida/psicologia , Perfil de Impacto da Doença , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Transplante de Córnea , Registros Eletrônicos de Saúde , Infecções Oculares Bacterianas/microbiologia , Infecções Oculares Bacterianas/cirurgia , Feminino , Humanos , Ceratite/microbiologia , Ceratite/cirurgia , Masculino , Pessoa de Meia-Idade , Medidas de Resultados Relatados pelo Paciente , Inquéritos e Questionários , Acuidade Visual/fisiologia
Lancet Psychiatry ; 8(1): 76-86, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-33341172


A major barrier to improving care effectiveness for mental health is a lack of consensus on outcomes measurement. The International Consortium for Health Outcomes Measurement (ICHOM) has already developed a consensus-based standard set of outcomes for anxiety and depression in adults (including the Patient Health Questionnaire-9, the Generalised Anxiety Disorder 7-item Scale, and the WHO Disability Schedule). This Position Paper reports on recommendations specifically for anxiety, depression, obsessive-compulsive disorder, and post-traumatic stress disorder in children and young people aged between 6 and 24 years. An international ICHOM working group of 27 clinical, research, and lived experience experts formed a consensus through teleconferences, an exercise using an adapted Delphi technique (a method for reaching group consensus), and iterative anonymous voting, supported by sequential research inputs. A systematic scoping review identified 70 possible outcomes and 107 relevant measurement instruments. Measures were appraised for their feasibility in routine practice (ie, brevity, free availability, validation in children and young people, and language translation) and psychometric performance (ie, validity, reliability, and sensitivity to change). The final standard set recommends tracking symptoms, suicidal thoughts and behaviour, and functioning as a minimum through seven primarily patient-reported outcome measures: the Revised Children's Anxiety and Depression Scale, the Obsessive Compulsive Inventory for Children, the Children's Revised Impact of Events Scale, the Columbia Suicide Severity Rating Scale, the KIDSCREEN-10, the Children's Global Assessment Scale, and the Child Anxiety Life Interference Scale. The set's recommendations were validated through a feedback survey involving 487 participants across 45 countries. The set should be used alongside the anxiety and depression standard set for adults with clinicians selecting age-appropriate measures.

Ansiedade/diagnóstico , Depressão/diagnóstico , Transtorno Obsessivo-Compulsivo/diagnóstico , Psicometria/métodos , Transtornos de Estresse Pós-Traumáticos/diagnóstico , Adolescente , Criança , Consenso , Humanos , Internacionalidade , Perfil de Impacto da Doença , Resultado do Tratamento , Adulto Jovem