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- A hybrid modelling approach for eliciting health state preferences: the Portuguese EQ-5D-5L value setPublication . Ferreira, Pedro L.; Antunes, Patricia; Ferreira, Lara; Pereira, LN; Ramos-Goni, Juan M.Background The EQ-5D is a generic preference-based quality of life measure considered useful for supporting clinical and policy decisions by providing utility values that can easily be converted into quality-adjusted life years to be integrated in cost-utility economic evaluations. Although the three-level classification system of the EuroQol questionnaire (EQ-5D-3L) is still the most popular preference-based instrument used worldwide, several studies reported a ceiling effect on this version, especially in healthy and/or young individuals. In 2009, the EuroQol Group introduced a five-level EQ-5D, which expands the descriptive system from three to five levels within the same five dimensions. For this version to be used in health economic evaluation, societal values need to be assigned to the 3125 health states generated by this instrument. Objectives The aims of this study were to elicit the EQ-5D-5L health state preferences from the general Portuguese population and to derive the Portuguese value set for the EQ-5D-5L. Methods A representative sample of the Portuguese general population aged above 18 years was stratified by age and gender (n = 1451). Between October 2015 and July 2016, 28 interviewers carried out a series of 1-h-long computer-assisted personal interviews following the EuroQol Valuation Technology protocol. Each interview included the valuation of ten health states using the composite time trade-off (cTTO) and seven pairs of discrete choice experiments (DCEs). A standardized tool for quality control was used to assess the quality of the data as well as direct supervision and cross-examination of 10% of the global sample size. Data from both cTTO and DCE valuation tasks were modelled using a censored heteroskedastic hybrid model. Results Interviewers complied with the quality control protocol in providing high-quality valuation data. The hybrid econometric model had consistent and significant parameters. The derived societal values for the Portuguese population ranged from - 0.603 to 1. Conclusion This study provided the Portuguese value set for the EQ-5D-5L on the basis of a hybrid econometric model using cTTO and DCE data. These results represent the preferences of the Portuguese population and are recommended to inform health decision-making in Portugal.
- Does Aortic Valve replacement surgery improve patients' Quality of Life?Publication . Coelho, Pedro; Ferreira, Lara; Vital, Clara; Fragata, JoséIntroduction: Aortic valve replacement surgery is done to increase patients' life expectancy and improve their health-related quality of life. Several published studies have found improvement in health-related quality of life after this procedure, but none have involved patients in Portugal. This study sought to evaluate patients' health-related quality of life after the implantation of aortic prostheses and compare these values with preoperative health-related quality of life and the general Portuguese population's health-related quality of life. Material and Methods: A retrospective study was done with elective patients who underwent implantation of an aortic prosthesis between August 2011 and April 2016. Health-related quality of life was evaluated using the Short Form 36 Health Survey and Short Form 6 Health Survey questionnaires in the preoperative period and 3, 6 and 12 months post-surgery. Descriptive and inferential analyses were conducted to process the data and compare preoperative health-related quality of life with postoperative values and the Portuguese population's norms. Results: The sample included 506 patients with an average age of 70.6 years. The majority are male (53.6%). The postoperative results show a statistically significant improvement compared to preoperative health-related quality of life in all eight dimensions of the Short Form 36 Health Survey. When contrasted with the general Portuguese population, patients' health-related quality of life is lower in the preoperative period, improving postoperatively and reaching higher than average health-related quality of life levels in some subgroups of patients and in various dimensions. An analysis of the Short Form 6 Health Survey results revealed that the patients undergoing this surgery have a higher level of preoperative problems compared with the general population, but these patients' values approach those of the general population by the end of one year post-surgery. Discussion: This is the first study in Portugal that compares health-related quality of life using a validated scale, before and after the aortic prosthesis implantation surgery. The results demonstrate a significant improvement in all dimensions, which is not consistently observed in other published studies. Conclusion: The results confirm that the implantation of aortic prostheses improves patients' health-related quality of life, over time bringing it close to the general population's levels.
- 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.
- Quality of life in asthma patientsPublication . Ferreira, Lara; Brito, Ulisses; Ferreira, Pedro LopesIn this paper we present a study whose main aim is the measurement of the Health Related Quality of Life (HRQoL) of patients with asthma and the presentation of a first draft of normative values as measured by the SF-6D for asthma patients. In addition, we investigate how far non-disease-specific HRQoL measures can distinguish groups in terms of socio-demographic characteristics. The Portuguese versions of the EQ-5D, SF-6D, AQLQ(S) and ACQ were administered using personal interviews to a representative sample of the Portuguese population with asthma. Most of the individuals did not report significant problems in the dimensions used, with the exception of the physical functioning, where individuals reported moderate limitations. The mean utility value was 0.86. Male gender, young, single, individuals with high educational attainment level, employed, individuals with high income and those residing in urban areas reported higher utility levels. As expected, those who were in a severe stadium of the disease reported lower mean utility levels than those who were in a less severe stadium of the disease. Normative values for the SF-6D were computed for patients with asthma by gender, age, marital status, educational attainment level, employment status, area of residence and average monthly net income. The preference-based measures used in this study distinguish patient groups with asthma in terms of socio-demographic groups. The normative values can be used in economic evaluation and clinical studies as they incorporate patients' preferences and translate the value attributed to patients' health state.
- Assessing Health-Related Quality of life in patients with Psoriasis compared with the portuguese populationPublication . Ferreira, Lara; Oliveira Martins, S.; Moital, I.; Ferreira, P.; Varela, P.; Oliveira, H.; Laires, P. A.; Cabrita, J.To assess the health-related quality of life (HRQoL) in patients with psoriasis (PsO) and to compare with the Portuguese general population. It also aims to explore the associations between HRQoL and sociodemographic variables.
- Health-related quality of life in patients with Rheumatoid ArthritisPublication . Ferreira, Lara; Ferreira, Pedro Lopes; Baleiro, RitaObjectives: Rheumatoid arthritis (RA) is a chronic rheumatic disease of unknown aetiology and greater incidence among the elderly. It can lead to serious consequences regarding functional limitations and patient's ability to work. The purpose of this study was to assess the health-related quality of life in patients with RA. Methods: Portuguese version of SF-6D and Portuguese translations of EQ-5D and AIMS2-SF were self-administered in a postal survey to a representative sample of the Portuguese population with RA. Data concerning the patients' characteristics and the stage of the disease were also collected. Results: The majority of the patients presented minor problems in some of the instruments' dimensions. In a scale from 0.30 to 1.00, the average utility score was 0.77. The lowest utility scores were reported by women, those who were divorced or separated, individuals with lower educational levels, who had lower incomes, were recently diagnosed and those who were not taking new biological therapies. Apart from these, patients who had a more severe RA and co-morbidity also report lower utility scores. Conclusions: The preference-based utility measures used in this study adequately discriminate across different RA severity and socio-demographic background. Assuming that these values represent the patients' preferences and the utility associated with their health state, the results presented in this paper may be used as an approximation to normative values for the SF-6D in economic evaluation studies as well as in clinical studies.
- Valuing health states: is the MACBETH approach useful for valuing EQ-5D-3L health states?Publication . Oliveira, Mónica D.; Agostinho, Andreia; Ferreira, Lara; Nicola, Paulo; Bana e Costa, CarlosBackground Quality Adjusted Life Years (QALYs) are a key outcome measure widely used within health technology assessment and health service research studies. QALYs combine quantity and quality of life, with quality of life calculations relying on the value of distinct health states. Such health states’ values capture the preferences of a population and have been typically built through numerical elicitation methods. Evidence points to these value scores being influenced by methods in use and individuals reporting cognitive difficulties in eliciting their preferences. Evidence from other areas has further suggested that individuals may prefer using distinct elicitation techniques and that this preference can be influenced by their numeracy. In this study we explore the use of the MACBETH (Measuring Attractiveness by a Categorical Based Evaluation Technique) non-numerical preference elicitation approach for health states’ evaluation. Methods A new protocol for preference elicitation based on MACBETH (only requiring qualitative judgments) was developed and tested within a web survey format. A sample of the Portuguese general population (n=243) valued 25 EQ-5D-3L health states with the MACBETH protocol and with a variant of the time trade-off (TTO) protocol, for comparison purposes and for understanding respondents’ preference for distinct protocols and differences in inconsistent evaluations. Respondents answered to a short numeracy test, and basic socio-economic information collected. Results Results show that the mean values derived from MACBETH and the TTO variant are strongly correlated; however, there are substantial differences for several health states’ values. Large and similar numbers of logical inconsistencies were found in respondents’ answers with both methods. Participants with higher levels of numeracy according to the test preferred expressing value judgments with MACBETH, while participants with lower levels were mostly indifferent to both methods. Higher correlations between MACBETH and TTO variant evaluations were observed for individuals with higher numeracy. Conclusion Results suggest that it is worth researching the use of non-numerical preference elicitation methods. Numeracy tests more appropriate for preference elicitation when no explicit considerations of uncertainty are made need to be explored and used. Further behavioural research is needed to fully understand the potential for using these methods in distinct settings (e.g. in different evaluation contexts and in face-to-face and non-face-to-face environments), as well as to explore the effect of literacy on assessments and on respondents’ preferences.
- 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.
- Quality of life asymmetries based on the residencePublication . Ferreira, Pedro L.; Antunes, Patricia; Ferreira, Lara; Pereira, LNQuality of life (QoL) self-perceptions are, by definition a subjective indicator. Based on the type of residence, the purpose of this paper was to examine possible asymmetries regarding the selfperception of QoL and their opinions regarding life and death.