Impact of Lighting Assessment and Optimization on Participation and Quality of Life in Individuals with Vision Loss.

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.

Understanding the socioeconomic costs of dystrophic epidermolysis bullosa in Europe: a costing and health-related quality of life study.

BACKGROUND: Dystrophic epidermolysis bullosa (EB) is a family of rare genetic dermatological conditions. Recent evidence indicated that in addition to its detrimental implications on patient health-related quality of life (HRQoL), there are substantial socioeconomic cost implications, especially regarding direct non-medical costs. This study aims to understand the burden of dystrophic EB (DEB) in Europe, using a primary EB patient-level dataset. METHODS: A bottom-up, cross-sectional, study design was adopted for non-institutionalised patients diagnosed with EB who received outpatient care across EU5 countries: France, Germany, Italy, Spain, and the United Kingdom. A prevalence-based approach was used to estimate resource utilisation from a societal perspective, including direct (medical and non-medical) and indirect costs for patients and caregivers. Patient and caregiver outcomes were obtained using the EQ-5D questionnaire. RESULTS: A sample of 91 DEB patients was analysed. Overall, average EU5 annual cost per patient was estimated at €53,359, ranging from €18,783 (France) to €79,405 (Germany). Average EU5 annual direct medical costs were estimated at €8357 (15.7% of total), ranging from €5658 (France) to €12,576 (Germany); average direct non-medical costs were estimated at €41,353 (77.5% of total), ranging from €11,961 (France) to €57,000 (Germany); and average indirect costs were estimated at €3649 (6.8% of total), ranging from €1025 (Italy) to €9930 (United Kingdom). Costs varied across patients with different disability but also between children and adults. The mean EQ-5D index score for adult DEB patients ranged between 0.304 (United Kingdom) and 0.541 (Germany), with an EU5 average of 0.456, whereas the mean EQ-5D visual analogue scale score ranged between 47.5 (Germany) and 70.0 (France), with an EU5 average of 61.9. Limitations included potential patient selection bias, recall bias, and exclusion of bandaging and related costs. CONCLUSIONS: The study revealed a substantial socioeconomic burden for DEB in Europe, attributable mostly to high direct non-medical costs, with the majority of patients requiring support from caregivers at home. Compared to the average economic burden of the overall EB patient population, costs for DEB patients are higher across all components of direct medical, direct non-medical and indirect costs.

Visual Field Loss Impacts Vision-Specific Quality of Life by Race and Ethnicity: The Multiethnic Ophthalmology Cohorts of California Study.

PURPOSE: To assess the impact of visual field loss (VFL) on vision-specific quality of life (VSQOL) by race, ethnicity, and age. DESIGN: Pooled analysis of cross-sectional data from 3 population-based, prospective cohort studies. PARTICIPANTS: The Multiethnic Ophthalmology Cohorts of California Study (MOCCaS) participants included 6142 Latinos, 4582 Chinese Americans, and 6347 Black Americans from Los Angeles County. METHODS: A total of 17 071 adults aged 40 years and older completed comprehensive interviews and ophthalmic examinations from 2000 to 2018. VFL was measured using the Humphrey Swedish Interactive Threshold Algorithm Standard 24-2 test as decibels (dB) of mean deviation (MD). Multivariable linear regression was used to evaluate the impact of VFL in the better-seeing eye on self-reported VSQOL scores, adjusting for sociodemographic and clinical covariables. Hierarchical modeling was performed to determine the best-fit model after considering main effects and interactions by race, ethnicity, and age. MAIN OUTCOME MEASURES: The VSQOL scores were measured using the 25 Item National Eye Institute Visual Function Questionnaire (NEI-VFQ-25). Item response theory was used to model vision-related task and well-being composite scores, and classical test theory was used to calculate 11 vision subscales. RESULTS: The impact of VFL on VSQOL varied by race and ethnicity. Five-point reductions in task and well-being scores were reached after mild-to-moderate VFL for Latinos (6.7 dB and 7.5 dB), mild-to-moderate VFL for Chinese Americans (7.0 dB and 8.7 dB), and moderate-to-severe VFL for Black Americans (10.1 dB and 12.9 dB), respectively. Differences met statistical significance when comparing Latinos and Black Americans (P < 0.001). Visual field loss had the largest effect on driving among all participants. Driving difficulties were the only VSQOL outcome modified by age; participants aged 65 years and older scored 0.487 lower points per MD of VFL (P < 0.001). Subscales most affected by VFL included role function, mental health, and dependency. CONCLUSIONS: Race and ethnicity modified the impact of VFL on VSQOL, even after adjusting for sociodemographic covariates. In MOCCaS, Latinos and Chinese Americans reported a greater change in VSQOL than Black Americans for the same level of VFL. Future work should assess whether findings were due to socioeconomic or cultural differences in perception of visual function.

Percepção de queixa vocal e autoavaliação do impacto de um problema de voz em atores profissionais de teatro / Perceived vocal complaint and self- assessment of the vocal problem impact in professional theater actors

RESUMO Objetivo investigar a ocorrência de queixa vocal autorreferida no uso profissional da voz em atores profissionais de teatro; correlacionar presença de queixa vocal com três protocolos de autoavaliação do impacto de uma alteração vocal: Escala de Sintomas Vocais (ESV), Escala de Desconforto do Trato Vocal (EDTV) e Índice de Desvantagem Vocal -10 (IDV-10); verificar quais protocolos são mais robustos à detecção do impacto de possível disfonia nessa população. Métodos Participaram 75 atores profissionais de teatro, ambos os gêneros, 18 a 64 anos. Os atores informaram a presença ou ausência de queixa vocal e responderam a três protocolos de autoavaliação: Escala de Sintomas Vocais (ESV), Escala de Desconforto do Trato Vocal (EDTV) e Índice de Desvantagem Vocal-10 (IDV-10). Resultados constatou-se que 25% dos atores apresentaram queixa vocal. O grupo com queixa (GCQ) apresentou maior número de sintomas vocais e maior frequência e intensidade de desconforto de trato vocal, quando comparado ao grupo sem queixa (GSQ). IDV-10 não identificou desvantagem vocal nos grupos. No GCQ, houve correlação forte entre ESV e IDV-10 e correlação muito forte entre os escores de frequência e intensidade da EDTV. No GSQ, houve correlação moderada entre ESV e EDTV, ESV e IDV-10 e correlação muito forte entre os escores de frequência e intensidade da EDTV. Conclusão neste estudo, 25% dos atores profissionais de teatro apresentaram queixa vocal. A correlação entre a queixa vocal e os protocolos foi positiva e variou de moderada à forte. No GCQ, a ESV e a EDTV foram instrumentos mais robustos na detecção do impacto de uma possível disfonia.

ABSTRACT Purpose To investigate the occurrence of self-reported vocal complaints in the professional use of the voice in professional theater actors; analyze the correlation between the presence of vocal complaint and three self-assessment protocols of the vocal problem impact; The Voice Symptom Scale (VoiSS), the Vocal Tract Discomfort (VTD) scale and the Voice Handicap Index -10 (VHI -10); verify the most robust protocols to identify dysphonia in this population. Methods The participants were 75 professional theater actors, men and women, between 18 and 64 years old. They answered to a questioner informing presence or absence of vocal complaint and to three self-assessment protocols: VoiSS, VTD and VHI-10. Results 25% of the actors presented vocal complaints. The group with vocal complaint (GwVC) had more voice symptoms and higher frequency and intensity of vocal tract discomfort than the group with no vocal complaint (GnVC). No group presented voice handicap considering the VHI-10 and a very high correlation between the VTD frequency and intensity scores. The GnVC presented moderate correlation between the VoiSS and the VTD, moderate correlation between the VoiSS and the VHI-10 and, a very high correlation between the VTD frequency and intensity scores. Conclusion In this study, 25% of professional theater actors presented vocal complaints. The correlation between vocal complaints and protocols was positive and ranged from moderate to strong. The VoiSS and the VTD were more robust identify dysphonia in the GwVC.

Evaluation of previous management against a developed clinical pathway for chronic rhinosinusitis with nasal polyposis in Universiti Kebangsaan Malaysia Medical Center.

ABSTRACT: The study aims to evaluate previous management of CRSwNP patients in Universiti Kebangsaan Malaysia Medical Center (UKMMC) against a developed CP.Chronic rhinosinusitis with nasal polyposis (CRSwNP) has high economic burden and impacts patient's quality of life. Implementation of clinical pathway (CP) can standardize care while optimizing resources.Analytical cross-sectionalThis study utilized medical records of 103 CRSwNP patients at UKMMC otorhinolaryngology clinic from 2010 to 2015. Patients were divided into groups who underwent or did not undergo surgery. Information was obtained regarding sociodemographic, follow-ups, pharmaceutical regimes, and treatment cost. Cost analysis was done using top-down analysis and activity-based costing and CP was formulated. Cost was calculated using year 2020 rates to adjust for inflation. (United States Dollars [USD]1 = Ringgit Malaysia [RM] 4.2015)Study showed non-CP patients were undertreated compared to CP. This affects clinical outcomes as optimal treatment demanded by CP was not achieved. Total cost for non-CP, non-surgery patients were lower (USD660) compared to CP (USD780) due to under treatment and shorter follow-ups. Meanwhile, total cost for non-CP surgery patients were higher (USD3600) compared to CP (USD2706) due to longer visit durations and hospital stays. Non-CP surgery group underwent lengthy follow-up duration (20.7 months) prior to operation compared to 12 months expected in CP.Study showed non-CP patients were undertreated compared to CP. We identified aspects which resulted in resource wastage and unnecessary burden to our healthcare system. This study enables development of a written CP by fine-tuning various aspects of CP which could be applied to our future practice.

Economic burden and health-related quality of life in tenosynovial giant-cell tumour patients in Europe: an observational disease registry.

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.

The impact of antineutrophil cytoplasmic antibody-associated vasculitis on employment and work disability in an Australian population.

AIM: Although antineutrophil cytoplasmic antibody-associated vasculitis (AAV) most commonly affects older individuals, many patients develop the disease during their most productive working years. The aim of this study was to examine the effects of AAV on employment and work disability in a cohort of Australian patients of working age. METHODS: Patients attending a vasculitis clinic located in Melbourne, Australia, completed an employment questionnaire in addition to the Work Productivity and Activity Impairment Questionnaire: Specific Health Problem. RESULTS: The average age of the 47 respondents was 47.8 ± 11.9 years (range 22-63 years), with a median disease duration of 60 months (range 10.2-318.5 months). There were 68.1% who were currently employed, but 20.6% of respondents employed at the time of diagnosis were no longer working and 10.6% had experienced a significant reduction in work hours since their diagnosis. There were 12.7% who were dependent on the disability support pension. The rate of work disability was 23.4%. Many participants considered themselves work impaired (41.9%), with 10.1% having missed work in the previous week. Furthermore, 44.7% of respondents reported that their financial stability had been negatively impacted by their vasculitis diagnosis. Fatigue was commonly reported. Work disabled patients were significantly more likely to be obese and less likely to have completed a tertiary education. Work disabled patients tended to be older, myeloperoxidase-antineutrophil cytoplasmic antibody positive, and have renal involvement and lung involvement. CONCLUSION: A proportion of people living with AAV in Australia experience a decline in employment and an increase in work disability when living with this condition.

A Head-to-Head Comparison of the Standard Quality-Adjusted Life Year Model With the Annual Profile Model.

OBJECTIVES: The standard quality-adjusted life year (QALY) model (SQM) assumes time-utility independence within constant health states and additive independence when health varies over time. The validity of SQM has been challenged through reported violations of these assumptions. An alternative approach that relaxes these assumptions is to assign a single valuation to an entire health profile: an integral assessment of disease severity over time. Here, we compare SQM with the annual profile model (APM) and test SQM for additive independence. METHODS: Eighty-two respondents valued 6 episodic conditions, including 4 of short duration, with SQM and APM, using the time trade-off method. Inter-rater reliability was assessed using intraclass correlation coefficients. Face validity was tested by asking respondents how well they were able to imagine the health states under SQM and APM. We calculated SQM QALY values for a 1-year time period, allowing for a direct comparison with APM values. For the short-term conditions we expected higher QALY values for SQM, violating additive independence. RESULTS: APM showed higher interrater reliability (intraclass correlation coefficient of 0.53 vs 0.18, respectively) and better face validity than SQM, with 6% (APM) vs 21% (SQM) of all respondents reporting difficulties. Additive independence of SQM was violated in 5 of the 6 conditions (including the 4 short duration health states), with higher QALY values under SQM (mean difference 0.04). CONCLUSION: The impact of short-term conditions is systematically underestimated under SQM when compared to a health profile model. APM is a less restrictive model and demonstrates better validity.

Avaliação da Qualidade de Vida da Pessoa com Deficiência: revisão sistemática da literatura / Assessment of the Quality of Life of People with Disabilities: A systematic review of the literature / Evaluación de la calidad de vida de las personas con discapacidad: una revisión sistemática de la literatura

Introdução: O conceito de Qualidade de Vida (QV) é referência central na produção do cuidado integral à saúde da Pessoa com Deficiência (PcD). Objetivo: Realizar a revisão sistemática da produção científica sobre QV de PcD, no período de 2009 a 2019. Método: Identificação de artigos mediante buscas simples e booleana pelos descritores - deficiência/pessoa com deficiência/disabled persons /persons with disabilities; avaliação/assessment/evaluation; qualidade de vida/quality of life; avaliação da qualidade de vida/assessment of quality of life, nas bases LILACS, SciELO, Cochrane Library, PubMed/MedLine e Google Acadêmico. Resultados: Atenderam aos critérios de seleção e foram submetidos à análise de conteúdo 19 estudos. Desses, 13 utilizaram os instrumentos criados pela OMS: dois WHOQOL-100 e sete sua versão abreviada o WHOQOL-bref; um WHOQOL-OLD - módulo complementar para avaliação de pessoas idosas; uma versão Stroke-Specific Quality of Life Scale - SSQOL - específica para pessoas com acidente vascular cerebral; um o WHOQOL-DIS - específico para PcD motora e intelectual e um estudo o WHODAS 2.0. Entre os restantes um estudo usou o SF-36; um Kidscreen; um GENCAT; um QoL-Q (QQV em português) e um PedsQL versão 4.0. Conclusão: Os instrumentos genéricos são os mais utilizados. Eles permitem comparações da QV da PcD com outras populações, mas não permitem a observação mais aprofundada de suas especificidades. Se o objetivo da pesquisa for obter informações sobre dimensões a serem preconizadas no cuidado em saúde da PcDs é recomendável que sejam utilizados instrumentos específicos, que destacam as dimensões física, psicológica/emocional, relações sociais e meio ambiente, além dos aspectos autonomia, autodeterminação, inclusão, direitos da PcD.

Introduction: The concept of quality of life (QOL) is a central reference when producing comprehensive health care for people with disabilities (PWD). Objective: To conduct a systematic review of the scientific production on the QOL of PWD from 2009 to 2019. Method: Identification of articles through simple and Boolean search with the descriptors: deficiência/pessoa com deficiência/disabled persons /persons with disabilities; avaliação/assessment/evaluation; qualidade de vida/quality of life; avaliação da qualidade de vida/assessment of the quality of life, in LILACS, SciELO, Cochrane Library, PubMed/MEDLINE, and Google Scholar. Results: A total of 19 studies met the selection criteria and were submitted to content analysis. Of these, 13 used instruments created by WHO: two used WHOQOL-100, and seven, its abbreviated version, WHOQOL-BREF; one, WHOQOL-OLD ­ add-on module to assess older adults; one, the Stroke-Specific Quality of Life Scale ­ SS-QOL ­ specific for people with a stroke; one, WHOQOL-DIS ­ specific for people with motor and intellectual disability; and one, WHODAS 2.0. Of the others, one study used the SF-36; one, Kidscreen; one, GENCAT; one QOL- Q; and one, PedsQL 4.0. Conclusion: The generic instruments are the most used. They allow for the comparison of QOL of PWD with that of other populations, though more in-depth observation of their specificities is not made possible. If the research aims to obtain information on dimensions to be recommended in the health care of PWD, they should use specific instruments, which highlight the physical, psychological/emotional, social relationships, and environmental dimensions, besides the autonomy, self-determination, inclusion, and rights of the PWD.

Introducción: El concepto de calidad de vida (QOL) es una referencia central en la producción de atención integral de salud para Personas con Discapacidad (PcD). Objetivo: llevar a cabo una revisión sistemática de la producción científica sobre la calidad de vida de las personas con discapacidad, en el período de 2009 a 2019. Método: identificación de artículos mediante búsquedas simples y booleanas por los descriptores - discapacidad/personas con discapacidad/personas con discapacidad; evaluación; qalidad de vida/qalidad de vida/evaluación de calidad de vida/ evaluación de qalidad de vida basada en LILACS, SciELO, Cochrane Library-, PubMed/MedLine y Google Scholar. Resultados: cumplieron con los criterios de selección y fueron enviados análisis de contenido 19 estudios. De estos, 13 utilizaron los instrumentos creados por la OMS: dos WHOQOL-100 y siete su versión abreviada WHOQOL-bref; uno WHOQOL-OLD - módulo complementario para evaluar a las personas mayores; uno la versión de la Escala de calidad de vida específica para el accidente cerebrovascular - SSQOL - específica para personas con accidente cerebrovascular; uno WHOQOL-DIS - específico para PwD motor e intelectual y uno WHODAS 2.0. Entre el resto se utilizaron: uno SF-36; uno pantalla para niños; uno GENCAT; uno QoL-Q (QQV en portugués) y uno PedsQL versión 4. Conclusión: Los instrumentos genéricos son los más utilizados. Permiten comparaciones de QoL de PcD con otras poblaciones, pero no permiten una observación más detallada de sus especificidades. Si el objetivo del estudio es obtener información sobre las dimensiones que se promoverán en la atención de la salud de las personas con discapacidad, se recomienda utilizar instrumentos específicos que resalten las dimensiones físicas, psicológicas / emocionales, de las relaciones sociales y del entorno, además de los aspectos de autonomía, autodeterminación , inclusión, derechos de PcD.

The impact of disease and sociodemographic background on children suffering from cerebral palsy / A betegség és a szociodemográfiai háttér hatása a cerebralis bénulásban szenvedo gyermekek életminoségére.

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.

Impact of Endometriosis on Fatigue and Productivity Impairment in a Cross-Sectional Survey of Canadian Women.

OBJECTIVE: To evaluate fatigue burden and productivity impairments in Canadian women with a self-reported diagnosis of endometriosis (DxE). METHODS: From December 2018 to January 2019, Canadian women aged 18-49 years completed an online survey assessing fatigue via the Patient-Reported Outcomes Measurement Information System (PROMIS) Fatigue Short Form 6a questionnaire. Fatigue T-scores were compared between women with and without a DxE, by age and endometriosis symptom severity, using t tests. Women with a DxE completed the Work Productivity and Activity Impairment - Specific Health Problem (WPAI-SHP) questionnaire. The effects of age and hallmark endometriosis symptoms on productivity impairments were assessed via analysis of variance. RESULTS: Survey data included 2004 women with and 26 528 women without a DxE. Mean fatigue T-scores were 58.5 ± 10.1 in women with a DxE and 59.2 ± 10.1 in women with hallmark endometriosis symptoms (i.e., menstrual or non-menstrual pelvic pain/cramping, dyspareunia) versus 55.2 ± 9.4 in women without a DxE (both P < 0.001). Women with moderate or severe endometriosis symptoms had a mean T-score of 61.2 ± 9.4 versus 55.9 ± 10.1 for women with mild symptoms (P < 0.001). Women with moderate or severe hallmark endometriosis symptoms had mean T-scores of 59.6-62.9 versus 57.0-58.2 for women with mild or no symptoms (all comparisons P < 0.01). Women with a DxE reported 17.1% of work time missed, 41.8% impaired work ability, 46.5% overall work impairment, and 41.4% activity impairment per the WPAI-SHP. Women with a DxE aged 30-34 and 35-39 years consistently experienced the greatest effects of fatigue and productivity impairments. CONCLUSIONS: Canadian women with a DxE experience a substantial fatigue burden and significant productivity impairments.

Quality of life in patients with uveitis: data from the ULISSE study (Uveitis: cLInical and medico-economic evaluation of a Standardised Strategy for the Etiological diagnosis).

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

Avaliação da qualidade de vida em pacientes idosos antes e após a cirurgia de catarata / Quality of life assessment in elderly patients before and after cataract surgery

RESUMO Objetivo: Avaliar a qualidade de vida de pacientes idosos antes e após de se submeterem à cirurgia de catarata. Métodos: Estudo longitudinal analítico com abordagem quantitativa. A coleta de dados se deu em duas etapas (antes da cirurgia de catarata e 2 meses após o procedimento), tendo sido aplicados dois questionários, sendo um sociodemográfico e o outro o World Health Organization Quality of Life OLD. Recorreu-se à estatística descritiva e aos testes estatísticos t de Student, análise de variância, de Mann-Whitney e de Kruskal-Wallis. Resultados: Participaram da pesquisa 34 idosos, sendo 15 (44,1%) até 69 anos de idade e 19 (55,9%) com mais de 69 anos. Identificou-se decréscimo nos escores do Funcionamento do Sensório nos idosos que não tinham atividade de lazer (p=0,0006), não praticavam atividade física (p=0,0023) e não utilizavam a internet (p=0,0010). No domínio Atividades Passadas, Presentes e Futuras, identificou-se aumento do escore nos idosos que não tinham atividade de lazer (p=0,0258), não praticavam atividade física (p=0,0303), afirmaram ter outros problemas de saúde (p=0,0372) e referiram ter boa saúde (p=0,0298). Já no domínio Participação Social, houve aumento do escore nos idosos que não tinham atividade de lazer (p=0,0068), não praticavam atividade física (p=0,0033) e afirmaram ter saúde regular (p=0,0102). Conclusão: Evidenciaram-se decréscimo no Funcionamento do Sensório e aumento nas Atividades Passadas, Presentes e Futuras e na Participação Social.

ABSTRACT Objective: To evaluate quality of life of elderly patients before and after cataract surgery. Methods: A longitudinal analytical study with quantitative approach. Data collection was performed in two stages (before cataract surgery and 2 months after the procedure), when two questionnaires were used - a sociodemographic and the World Health Organization Quality of Life (WHOQLD). Descriptive statistics and Student's t test, analysis of variance, Mann-Whitney and Kruskal-Wallis tests were employed. Results: A total of 34 elderly individuals participated in the research, 15 (44.1%) aged up to 69 years and 19 (55.9%) over 69 years. A decrease in the Sensory Functioning scores was identified in those who had no leisure activity (p=0.0006), did not exercise (p=0.0023) and did not use the internet (p=0.0010). In the domain Past, Present and Future Activities, an increase in the score was observed in the elderly who had no leisure activity (p=0.0258), did not exercise (p=0.0303), reported having other health problems (p=0.0372), and in those who reported having good health status (p=0.0298). In the Social Participation domain, there was an increase in the score of the elderly who had no leisure activity (p=0.0068), did not exercise (p=0.0033), and of those who reported having regular health status (p=0.0102). Conclusion: There was a decrease in Sensory Functioning scores and an increase in the domains Past, Present and Future Activities, as well as Social Participation.

The Economic Impact and Health-Related Quality of Life of Spinal Muscular Atrophy. An Analysis across Europe.

Background: this study aimed to estimate the economic impact and health-related quality of life (HRQOL) of patients with spinal muscular atrophy (SMA) in three European countries. It was used a cross-sectional study carried out in France, Germany, and the United Kingdom. Data were collected from July 2015 to November 2015. Healthcare costs (hospitalizations, emergencies, medical tests, drugs used, visits to general practitioners (GPs) and specialists, medical material and healthcare transport), and non-healthcare costs (social services and informal care) were identified and valued. EuroQol instruments, the Zarit interview, and the Barthel Index were also used to reflect the burden and the social impact of the disease beyond the cost of healthcare. Results: we included 86 children with SMA, 26.7% of them had Type I, and 73.3% Type II or III. The annual average cost associated with SMA reaches €54,295 in the UK, €32,042 in France and €51,983 in Germany. The direct non-healthcare costs ranged between 79-86% of the total cost and the informal care costs were the main component of these costs. Additionally, people suffering from this disease have a very low health-related quality of life, and there are large differences between countries. Conclusions: SMA has a high socioeconomic impact in terms of healthcare and social costs. It was also observed that the HRQOL of affected children was extremely reduced. The figures shown in this study may help to design more efficient and equitable policies, with special emphasis on the support provided to the families or on non-healthcare aid.

A Systematic Review of the Economic Burden of Type 2 Diabetes in Malaysia.

Diabetes causes significant disabilities, reduced quality of life and mortality that imposes huge economic burden on societies and governments worldwide. Malaysia suffers a high diabetes burden in Asia, but the magnitude of healthcare expenditures documented to aid national health policy decision-making is limited. This systematic review aimed to document the economic burden of diabetes in Malaysia, and identify the factors associated with cost burden and the methods used to evaluate costs. Studies conducted between 2000 and 2019 were retrieved using three international databases (PubMed, Scopus, EMBASE) and one local database (MyCite), as well as manual searches. Peer reviewed research articles in English and Malay on economic evaluations of adult type 2 diabetes conducted in Malaysia were included. The review was registered with PROSPERO (CRD42020151857), reported according to PRISMA and used a quality checklist adapted for cost of illness studies. Data were extracted using a data extraction sheet that included study characteristics, total costs, different costing methods and a scoring system to assess the quality of studies reviewed. The review identified twelve eligible studies that conducted cost evaluations of type 2 diabetes in Malaysia. Variation exists in the costs and methods used in these studies. For direct costs, four studies evaluated costs related to complications and drugs, and two studies were related to outpatient and inpatient costs each. Indirect and intangible costs were estimated in one study. Four studies estimated capital and recurrent costs. The estimated total annual cost of diabetes in Malaysia was approximately USD 600 million. Age, type of hospitals or health provider, length of inpatient stay and frequency of outpatient visits were significantly associated with costs. The most frequent epidemiological approach employed was prevalence-based (n = 10), while cost analysis was the most common costing approach used. The current review offers the first documented evidence on cost estimates of diabetes in Malaysia.

Ocular Manifestations and Burden Related to Sjögren Syndrome: Results of a Patient Survey.

PURPOSE: To compare the burden related to dry eye with systemic symptoms of Sjögren syndrome; to estimate the burden related to ocular treatments; and to compare the impact of dry eye and extraocular manifestations of Sjögren syndrome on various aspects of patient life. DESIGN: Cross-sectional study. METHODS: We conducted a postal survey of adult patients with a history of physician-diagnosed Sjögren syndrome. RESULTS: The survey was completed by 2,961 patients (mean age 65.1 years, standard deviation 11.7 years), most of whom were women (96%) and white (94%). Forty-one patients younger than 18 years of age were excluded. More than half (53%) experienced severe dry eye (ie, dry eye daily/almost daily with major impact on their life). Corresponding proportions for dry mouth and fatigue were 48% and 45%, respectively. Almost all patients (97%) had used nonprescription eye drops/artificial tears/ointments. Compared with patients who did not experience dry eye, those who experienced significant dry eye (ie, daily/almost daily dry eye) more often agreed that living with Sjögren syndrome made every day a challenge (adjusted odds ratio [OR] 3.81, 95% confidence interval [CI] 2.49 to 5.86) and added a significant emotional burden (adjusted OR 2.22, 95% CI 1.49 to 3.31). Adjusted ORs for the impact of dry eye were generally lower than those for fatigue, but were similar to dry mouth and considerably higher than use of systemic treatments for serious manifestations of the disease and diagnosis of lymphoma. CONCLUSIONS: Sjögren-related dry eye is more burdensome than systemic manifestations of the disease. While fatigue has the greatest impact on patient life, the impact of dry eye is comparable to that of other systemic manifestations.

Are we all in this together? Longitudinal assessment of cumulative adversities by socioeconomic position in the first 3 weeks of lockdown in the UK.

BACKGROUND: Despite media claims that coronavirus disease 2019 (COVID-19) is uniting societies and countries in shared experience, there has been concern that the pandemic is in fact exposing and widening existing inequalities within societies. Data have shown these differences for cases and fatalities, but data on other types of adversities are lacking. Therefore, this study explored the changing patterns of adversity relating to the COVID-19 pandemic by socioeconomic position (SEP) during the early weeks of lockdown in the UK. METHODS: Data were from 12 527 UK adults in the University College London COVID-19 Social Study (a panel study that involves online weekly data collection from participants during the COVID-19 pandemic). We analysed data collected from 25 March to 14 April 2020. The sample was well-stratified and weighted to population proportions of gender, age, ethnicity, education and country of living. We used Poisson and logit models to assess 10 different types of adverse experiences depending on an index of SEP over time. RESULTS: There was a clear gradient across the number of adverse events experienced each week by SEP. This was most clearly seen for adversities relating to finances (including loss of employment and cut in income) and basic needs (including access to food and medications) but less for experiences directly relating to the virus. Inequalities were maintained with no reductions in discrepancies between socioeconomic groups over time. CONCLUSIONS: There were clear inequalities in adverse experiences during the COVID-19 pandemic in the early weeks of lockdown in the UK. Results suggest that measures taken to try to reduce such adverse events did not go far enough in tackling inequality.

Self-management in older people living with cancer and multi-morbidity: A systematic review and synthesis of qualitative studies.

OBJECTIVE: Many older people with cancer live with multimorbidity. Little is understood about the cumulative impact of old age, cancer and multimorbidity on self-management. This qualitative systematic review and synthesis aimed to identify what influences self-management from the perspective of older adults living with cancer and multimorbidity. METHODS: Six databases were systematically searched for primary qualitative research reporting older adults' experiences of living with cancer and multimorbidity (eg, Medline, Embase, and CINAHL). A thematic synthesis was guided by Shippee's model of cumulative complexity. Text labelled as results in the included papers was treated as data. RESULTS: Twenty-eight studies were included. While the included studies varied in their focus, our analysis highlighted a number of important themes consistent across the studies. Health conditions with the greatest negative impact on independent living assumed the greatest importance, sometimes meaning their cancer was a low priority. Self-management practices seen as likely to interfere with quality of life were deprioritized unless viewed as necessary to maintain independence. When burden outweighed capacity, people were reluctant to ask for help from others in their social network. The contribution of formal healthcare services to supporting self-management was relatively peripheral. CONCLUSIONS: Old age and multimorbidity together may complicate self-management after cancer, threatening health and well-being, creating burden and diminishing capacity. Older adults prioritized self-management practices they considered most likely to enable them to continue to live independently. The protocol was registered with Prospero (CRD42018107272).

Assessment on the measurement properties of the Brazilian Portuguese language version of the International Consultation on Incontinence Questionnaire Female Sexual Matters Associated with Lower Urinary Tract Symptoms Module (ICIQ-FLUTSsex) / Avaliação das propriedades de medida da versão em português do International Consultation on Incontinence Questionnaire Female Sexual Matters Associated with Lower Urinary Tract Symptoms Module (ICIQ-FLUTSsex)

Abstract Objectives: to assess internal consistency and reliability in providing a Portuguese version of the International Consultation on Incontinence Questionnaire Female Sexual Matters Associated with Lower Urinary Tract Symptoms Module (ICIQ-FLUTSsex). Methods: a validation study was conducted by applying questionnaires for 56 women over 18 years old with active sexual life and presenting urinary incontinence, excluding those who had urinary infection in the past 6 months. Three questionnaires were used, one for personal identification; the International Consultation on Incontinence Questionnaire - Short Form (ICIQ-SF) and the ICIQ-FLUTSsex. SPSS software was used for data analysis. Cronbach's alpha was used to verify reliability of the items on the questionnaires and Kappa coefficient was used to assess the agreement between the questionnaires applied in the test-retest. Results: the median age was 49.1 years old, mostly were mixed colored skin and married, with a high prevalence of mixed urinary incontinence. Cronbach's alpha score was 0.80, which was considered good. Kappa value was moderate, ranging from 0.36 to 0.76. Conclusion: internal consistency was considered good and reliability moderate. The Portuguese version of ICIQ-FLUTSsex was proven to be valid to use on women with urinary incontinence, contributing for clinical practice, as it provides as a quick tool for research on sexual dysfunction.

Resumo Objetivos: avaliar a consistência interna e a confiabilidade e disponibilizar a versão em português do International Consultation on Incontinence Questionnaire Female Sexual Matters Associated with Lower Urinary Tract Symptoms Module (ICIQ-FLUTSsex). Métodos: estudo de validação, realizado por meio de questionários em 56 mulheres, maiores de 18 anos, com vida sexual ativa e apresentavam incontinência urinária, excluindo as que tiveram infecção urinária nos últimos 6 meses. Foram utilizados três questionários para coleta, um de identificação pessoal; o International Consultationon Incontinence Questionnaire-Short Form (ICIQ-SF) e o ICIQ-FLUTSsex. Para análise dos dados utilizou-se o software SPSS. Para verificar a confiabilidade dos itens do questionário utilizou o Alfa de Cronbach e para avaliar a concordância entre o questionário aplicado no teste-reteste foi utilizado o coeficiente de Kappa Ponderado. Resultados: a idade média foi de 49,1 anos, sendo a maioria parda e casada, com maior prevalência da incontinência urinaria mista. O resultado do Alfa de Cronbach foi de 0,80, considerado bom. O valor de Kappa Ponderado foi moderado, variando de 0,36 a 0,76. Conclusão: a consistência interna foi considerada boa e a confiabilidade moderada. A versão do ICIQ-FLUTSsex em português mostrou-se válida para ser utilizada em mulheres com incontinência urinária, contribuindo para a prática clínica, uma vez que fornece uma ferramenta rápida para a pesquisa sobre disfunção sexual.

Probable Exit Strategy Against COVID-19 of Low Resource Country like Nepal: Open Floor Discussion.

Lockdown is essential for containing the spread of SARS-CoV-2. It is the best measure to maintain extreme social distancing which has been effective in controlling the infection and saving lives. But they are causing huge loss economically, disrupting social life and causing distress around the world. Reopening too quickly or too boldly without a goal-oriented strategy could mean a second wave of infection as fierce or even worse as the first. The fundamentals of the virus remain the same - one infected person will, without a lockdown pass it onto three others on average. The consequences of lifting the lockdown are unforeseeable and the stakes are high. Due to the different spectrum of severity with same strain of virus and uncertainty of post lockdown era, lifting the lockdown will be a trial and error approach. Nevertheless, at some point the lockdown has to be lifted. The strategic approach would be innumerable testing, investigations, strong contact tracing, isolation and follow-up. In a low-income country like Nepal, this will mean negotiating a tricky balance between terminating the spread of SARS-CoV-2, and allowing people to recover their livelihoods before they slip into extreme poverty and anguish.