RESUMO
BACKGROUND: The Treatment Burden Questionnaire (TBQ) is a self-reported measure of the effect of treatment workload on patient wellbeing. We sought to validate the TBQ in Spanish and use it to estimate the burden of treatment in Argentinian patients with multiple sclerosis (MS). METHODS: The TBQ was forward-backward translated into Spanish. Two focus groups and 25 semi-structured interviews focused on wording and possible item exclusion. Validation was performed in 2 steps. First, 162 patients across a range of MS severity completed the questionnaire. Confirmatory factor analysis assessed the dimensional structure of the TBQ. Construct validity was assessed by studying correlations with fatigue and quality of life (QoL). Then, in a second cohort of 171 patients, we evaluated the association between TBQ scores and patients' sex, age, education level, employment status, type of MS, disease duration, comorbidities, EDSS, pharmacological treatment and medication adherence. RESULTS: The questionnaire presented a 3-factor structure in which burden was related to pharmacological treatment; comprehensive health assistance; and psycho-social-economic context. Composite reliability was > 0.8 for all factors. TBQ showed positive correlation with fatigue (rs = 0.467, p = 0.006), negative correlation with QoL (rs - 0.446, p = 0.009). For the second cohort, total TBQ score was 43 (SD 29). Lowest scores were observed on self-monitoring (0.53, SD 1.3) and highest for administrative load (4.2, SD 3.4). Inverse association was found between the TBQ score and medication adherence (r 0.243 p = 0.001). TBQ scores also correlated with daily patient pill/injection requirements (r 0.175 p = 0.020). Individuals receiving injectable treatment scored higher than patients on oral drugs (total TBQ 51 (SD 32) vs 39 (SD 27) p = 0.002). CONCLUSIONS: The TBQ in Spanish is a reliable instrument and showed adequate correlation with QoL and adherence scales in MS patients. TBQ may benefit health resources allocation and provide tailor therapeutic interventions to construct a minimally disruptive care.
Assuntos
Efeitos Psicossociais da Doença , Esclerose Múltipla , Qualidade de Vida , Inquéritos e Questionários , Tradução , Adulto , Argentina , Estudos de Coortes , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Reprodutibilidade dos TestesRESUMO
Missing data is a recurrent issue in epidemiology where the infection process may be partially observed. Approximate Bayesian computation (ABC), an alternative to data imputation methods such as Markov chain Monte Carlo (MCMC) integration, is proposed for making inference in epidemiological models. It is a likelihood-free method that relies exclusively on numerical simulations. ABC consists in computing a distance between simulated and observed summary statistics and weighting the simulations according to this distance. We propose an original extension of ABC to path-valued summary statistics, corresponding to the cumulated number of detections as a function of time. For a standard compartmental model with Suceptible, Infectious and Recovered individuals (SIR), we show that the posterior distributions obtained with ABC and MCMC are similar. In a refined SIR model well suited to the HIV contact-tracing data in Cuba, we perform a comparison between ABC with full and binned detection times. For the Cuban data, we evaluate the efficiency of the detection system and predict the evolution of the HIV-AIDS disease. In particular, the percentage of undetected infectious individuals is found to be of the order of 40%.
Assuntos
Busca de Comunicante , Infecções por HIV/epidemiologia , Infecções por HIV/transmissão , Modelos Biológicos , Algoritmos , Teorema de Bayes , Simulação por Computador , Cuba/epidemiologia , Humanos , Modelos Lineares , Cadeias de Markov , Método de Monte Carlo , Dinâmica não Linear , Processos EstocásticosRESUMO
This paper is devoted to the presentation and study of a specific stochastic epidemic model accounting for the effect of contact-tracing on the spread of an infectious disease. Precisely, one considers here the situation in which individuals identified as infected by the public health detection system may contribute to detecting other infectious individuals by providing information related to persons with whom they have had possibly infectious contacts. The control strategy, which consists of examining each individual who has been able to be identified on the basis of the information collected within a certain time period, is expected to efficiently reinforce the standard random-screening-based detection and considerably ease the epidemic. In the novel modelling of the spread of a communicable infectious disease considered here, the population of interest evolves through demographic, infection and detection processes, in a way that its temporal evolution is described by a stochastic Markov process, of which the component accounting for the contact-tracing feature is assumed to be valued in a space of point measures. For adequate scalings of the demographic, infection and detection rates, it is shown to converge to the weak deterministic solution of a PDE system, as a parameter n, interpreted as the population size, roughly speaking, becomes larger. From the perspective of the analysis of infectious disease data, this approximation result may serve as a key tool for exploring the asymptotic properties of standard inference methods such as maximum likelihood estimation. We state preliminary statistical results in this context. Eventually, relations of the model with the available data of the HIV epidemic in Cuba, in which country a contact-tracing detection system has been set up since 1986, is investigated and numerical applications are carried out.