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- 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.
- 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.