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- Usage and impact of patient‐reported outcomes in epilepsyPublication . Vonck, Kristl; Biraben, Arnaud; Bosak, Magdalena; Jennum, Poul Jørgen; Kimiskidis, Vasilios K.; Marusic, Petr; Mitchell, James W.; Ferreira, Lara; Ondrušová, Martina; Pana, Adrian; Persson, Ulf; von Oertzen, Tim J.; Lattanzi, SimonaBackground: The use of patient-reported outcomes (PRO) in clinical practice is gaining increasing attention. This study aimed to provide a critical assessment of the current state-of-the-art and beliefs about the use of PRO in the management of people with epilepsy across some European countries. Methods Structured interviews were conducted with European experts to collect insights about (I) the personal experience with PRO; (II) the value and impact of PRO in the decision-making process at the national level; and (III) the interest for and use of PRO by national health authorities. Results Nine neurologists (Austria, Belgium, Czechia, Denmark, France, Greece, Italy, Poland, and United Kingdom), three health economists (Portugal, Romania, and Sweden), and one epidemiologist (Slovakia) participated. They all stated that PRO are collected at their own countries in the context of clinical trials and/or specific projects. During everyday clinical practice, PRO are collected routinely/almost routinely in Austria and Sweden and only at the discretion of the treating physicians in Czechia, Denmark, France, Greece, and Portugal. There was complete consensus about the favorable impact that the PRO can have in terms of clinical outcomes, healthcare resources utilization, and general patient satisfaction. Only participants from Portugal and Sweden answered that the PRO are perceived as very important by the National Health Authorities of their respective countries. Conclusions Differences exist in attitudes and perspectives about PRO in epilepsy across Europe. An active plan is warranted to harmonize the measurement of PRO and ensure they can be relevant to people with epilepsy and health services.
- Ageing, Health-Related Quality of Life and Physical Activity – Evidence Based on the EQ-5D-5LPublication . Ferreira, Lara; Pais, Sandra; Ilchuk, Kateryna; Custódio Santos, MargaridaAs a result of increasingly senior populations worldwide, healthy ageing is becoming an important factor that can help reduce the burden of disease and disability and related healthcare costs. Previous research has shown that physical activity (PA) is crucial for healthier ageing and a better quality of life. This study sought to measure the PA and health-related quality of life (HRQoL) of people 55 years old or more. A sample of 202 senior adults completed a survey that comprised the EQ-5D-5L and other items assessing PA and activities of daily living (ADL) performance. Descriptive statistical analyses were carried out to characterise the sample and define its HRQoL. Non-parametric tests were used to compare the respondents' HRQoL according to sociodemographic variables and PA and ADL performance. The level of agreement between HRQoL and ADL scores was assessed using Spearman's rho. Sample subgroups were compared according to their age (i.e. nearly senior and senior) and sport and leisure time activities. Results show that HRQoL is lower for respondents with at least one diagnosed disease. Senior adults who take part in sport and leisure activities overall have a higher HRQoL, which is also impacted by the presence of at least one diagnosed disease and individuals' natural age-related issues. The results show the importance of preventing disease by helping senior adults engage in some level of PA given its impact on HRQoL. This research also confirmed that the EQ-5D-5L is a valid tool for measuring senior people's HRQoL.
- Validity and reliability of the Portuguese version of the modified Migraine Disability AssessmentPublication . Ferreira, Pedro L.; Luzeiro, Isabel; Lopes, Margarida; Jorge, André; Silva, Bruno; Ferreira, LaraBackground Migraine Disability Assessment Scale (MIDAS) is a useful tool to measure headache-related disability. Modified MIDAS with 4-week recall period reduces recall bias and improves accuracy of the results. This study aimed at validating mMIDAS in Portuguese. Methods Studied population consisted of adult migraine patients attending a headache outpatient clinic. Reliability was assessed by internal consistency and reproducibility in a 3-week test-retest. Content validity was evaluated by two expert panels. Construct validity was tested by comparing mMIDAS-P index in socioeconomic and clinical patient groups and scale unidimensionality was evidenced by factor analysis. Criterion validity was tested using EQ-5D-5L and HADS. Results Ninety-two patients, 88% female, mean age of 44 years, participated. They had, in average, 9.7 headache days in previous month, pain averaging 7.5/10. About 69.9% were on a migraine prophylactic treatment, and 42.4% had severe disability; 29.4 and 13.0% showed, respectively, moderate/severe anxiety and depression. Content validity showed that mMIDAS-P is simple and clinically useful. It did not show to be determined by patient’s sociodemographic characteristics and it was correlated with depression scale and EQ-5D-5L. Test-retest demonstrated high reproductive reliability and good internal consistency. Conclusion mMIDAS-P is valid and reliable. We strongly recommend it for clinical and research use.
- Healthcare, clinical factors and rehabilitation predicting quality of life in first-time stroke patients: a 12-month longitudinal studyPublication . Barbosa, Pedro Maciel; Ferreira, Lara Noronha; Cruz, Vitor Tedim; Silva, Augusta; Szrek, HelenaObjectives: One of the long-term rehabilitation goals in stroke survivors is to achieve the best health-related quality of life (HRQoL). This study analyzes the evolution of HRQoL one-year post-stroke to establish the main pre-stroke, clinical, health care and rehabilitation predictors. Materials and methods: This study uses patient-level data from a one-year single-center prospective cohort study of first stroke patients, assessed at baseline, 3, 6 and 12 months. A generalized linear model with a linear response determined independent predictors of HRQoL with EQ-5D-3L and SF-6D. The model included age, gender, scholarity, monthly income, residence, occupation, National Institute of Health Stroke Scale (NIHSS), Modified Rankin Scale (mRS), Barthel Index (BI), Mini-Mental State Examination (MMSE), length of stay, door-to-neurological examination time, access, frequency, and satisfaction with rehabilitation care. Results: A total of 391 acute stroke patients, with a mean disability of 3.7 and severity of 11.7 participated. A decline of HRQoL was observed from baseline to the first three months in both indexes, with an increase in HRQoL at 3 months until 12 months. Scores were significantly lower compared to corresponding population norms throughout follow-up, mostly affected by stroke severity, disability, rehabilitation access and frequency. Higher HRQoL was associated with lower mRS, NIHSS, age, length of stay, and with higher BI, MMSE, scholarity, occupation, and rehabilitation care. Conclusion: Clinical measures and rehabilitation care were the strongest HRQoL predictors of stroke survivors regardless of severity levels. These findings may contribute to the development of future health policies that focus on post-stroke recovery.
- Health-related quality of life in hereditary transthyretin amyloidosis polyneuropathy: a prospective, observational studyPublication . Inês, Mónica; Coelho, Teresa; Conceição, Isabel; Ferreira, Lara; de Carvalho, Mamede; Costa, JoãoBackground Hereditary Transthyretin Amyloidosis Polyneuropathy is a rare life-threatening neurologic disease that imposes considerable mortality and it is associated with progressive related disabilities. In this study, we aimed to assess the effect of the disease across health-related quality of life dimensions, in both carriers of the mutation and patients, to compare health-related quality of life with general population, as well as to explore health-related quality of life prognostic factors among patients, including disease progression and treatment. Methods This study was a multi-institutional, longitudinal, prospective, observational study of hereditary Transthyretin Amyloidosis Polyneuropathy Portuguese adult subjects (621 asymptomatic carriers and 733 symptomatic patients) enrolled in the Transthyretin Amyloidosis Outcomes Survey. Health-related quality of life was captured with the preference-based instrument EQ-5D-3 L. For general population the dataset included all subjects enrolled in a representative national study (n = 1500). Different econometric models were specified; multivariate probit, generalized linear model and generalized estimating equations model; including demographic and clinical covariates. Results Hereditary Transthyretin Amyloidosis Polyneuropathy patients have their health status severely impaired in all quality of life dimensions and more anxiety/depression problems were found among asymptomatic carriers. No differences on utility were found between carriers and general population (p = 0.209). Among patients, the utility value is estimated to be 0.51 (0.021), a decrement of 0.27 as compared with general population utility. Higher disease duration, advanced disease stage and not receiving treatment are associated with impaired health-related quality of life. No differences were found between genders (p = 0.910) or between late (≥50 years) and early-onset patients (p = 0.254). The utility estimate ranged from 0.63 (0.009) in stage I to 0.01 (0.005) in stage IV. Conclusions Hereditary Transthyretin Amyloidosis Polyneuropathy symptoms and progressive associated disabilities substantially decrease patient’s health-related quality of life. Clinical strategies focused on health-related quality of life preservation such as close follow-up of asymptomatic carriers, prompt diagnosis and adequate, early treatment would benefit patient’s long-term outcomes, slowing the progressive decline in health-related quality of life.
- Health and well-being of the Portuguese citizens: impacts of the COVID-19Publication . Ferreira, Lara; Pereira, Luis; Ferreira, Pedro L.Background COVID-19 pandemic placed unprecedented pressure on societies and healthcare systems around the world. Over the last years, measures imposed in almost all countries dealing with the pandemic sent the entire world into an extensive crisis and thus into a deep global recession. Since the outbreak began, many European countries have faced three/four waves of pandemic. Portugal has mainly dealt with three waves (March/April’2020; October/November’2020; January/February’2021), the third being the deadliest one. The purpose of this article is to provide evidence on the impact of the COVID-19 on health-related quality of life (HRQol) and well-being (W-B) of Portuguese citizens. It aims to (i) characterize these outcomes during the COVID-19 pandemic; (ii) compare them to pre-COVID-19 Portuguese population; and (iii) identify the social determinants that may affect these outcomes during the COVID-19 pandemic. Methods This study used data from a survey that collected data on HRQoL, W-B, satisfaction with life, economic and labour impacts, access to healthcare, mental and physical health, amongst others. The survey was implemented by telephone to a representative random sample of 1,255 respondents from the general adult Portuguese population, stratified by sex, age group and region. Data was collected during the end of the second national lockdown. For comparison purposes, we have also used two other representative databases from the general Portuguese population: (i) data from before the pandemic (n = 1,006); and (ii) data from a survey conducted during the first lockdown, (n = 904). Results Looking at health and access to healthcare, 4% of citizens had their surgeries postponed or cancelled because of COVID-19, more than a quarter had medical appointments or complementary exams postponed or cancelled, with 7% over 65 years old with surgeries cancelled or postponed and 32% medical appointments. COVID-19 pandemic also impacted negatively on the HRQoL of citizens, especially in the first lockdown. Half of the respondents reported feeling nervous, anxious, or on edge, about 45% of citizens felt sad or depressed. Sleeping problems were reported for almost 39% of citizens, and loneliness is reported by 29% of citizens. For about 70–85% of citizens, these feelings were more so than before the pandemic. Citizens with fair/strong economic stability were the most economically affected by the pandemic. Conclusions We provided evidence on the impact of COVID-19 on health and W-B of Portuguese citizens. Their health was worse than before the pandemic and the access to healthcare was highly affected.
- Economic burden of Parkinson’s disease and research trends: a bibliometric analysisPublication . Cunha, Maura; RODRIGUES GUITA ALMEIDA, MARIA HELENA; Guimarães, Isabel; Ferreira, LaraBackground impacts on health related-quality of life (HRQoL) and imposes a substantial economic burden. The overall trend and impact of research production on the economic burden of PD have not yet been documented. In this study, the objective is to describe, map and analyse the evolution and trend of research on the economic burden in PD. Therefore, the initial research questions were: (1) what are the main research keywords on costs in the field of Parkinson's disease? and (2) how do an author's studies on the economic burden and costs of Parkinson's disease influence scientific production?Methods The data used were retrieved from the Web of Science over the past 25 years, from 1997 to 2022. A bibliometric analysis was performed on the basis of the number of articles, citations, published journals, authors, countries scientific production and keywords plus.Results A total of 140 articles that met the criteria were collected and analysed, covering 736 authors, 41 journals and 34 countries. The most productive country was the United States of America (80.71%) and, among the journals, the Movement Disorders journal was the one with the largest growth (n = 27).