Browsing by Author "Cruz, C."
Now showing 1 - 3 of 3
Results Per Page
Sort Options
- Health-Related Quality of Life in Pulmonary Hypertension and Its Clinical Correlates: A Cross-Sectional StudyPublication . Reis, A.; Santos, M.; Vicente, M.; Furtado, I.; Cruz, C.; Melo, A.; Carvalho, L.; Gonçalves, F.; Sa-Couto, P.; Almeida, L.BACKGROUND: Health-related quality of life (HRQoL) impairment is common in pulmonary hypertension (PH), but its clinical predictors are not well established. This study aims to characterize the HRQoL of patients with pulmonary arterial hypertension (PAH) and other precapillary forms of PH (pcPH) and to explore its clinical correlates. MATERIALS AND METHODS: A cross-sectional, observational study of patients with documented PAH and other forms of pcPH. Patients completed two patient-reported outcome measures (PROM): Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) and Nottingham Health Profile (NHP). Clinical characteristics were retrieved from electronic medical records. RESULTS: Mean CAMPHOR and NHP scores for the study population were indicative of a moderate HRQoL impairment. Patients in World Health Organisation Functional Classes (WHO FC) III/IV showed significantly worse HRQoL. The main clinical correlates of HRQoL were WHO FC, 6-minute walking distance (6MWD), and Borg dyspnoea index. Overall quality of life (QoL), assessed through CAMPHOR's QoL domain, showed patterns comparable to HRQoL measured by both instruments. CONCLUSIONS: HRQoL, measured by two different PROMs, is impaired in Portuguese patients with PAH and other forms of pcPH, particularly in patients with increased disease severity. WHO FC, 6MWD, and Borg dyspnoea index are highly correlated with HRQoL and QoL.
- Pulmonary hypertension: Real-world data from a Portuguese expert referral centrePublication . Gomes, A.; Cruz, C.; Rocha, J.; Ricardo, M.; Vicente, M.; Melo, A.; Santos, M.; Carvalho, L.; Gonçalves, F.; Reis, A.Pulmonary hypertension (PH) is a heterogeneous, debilitating condition with highly relevant impact on functional capacity, quality of life, and life-expectancy.
- The Portuguese Severe Asthma Registry: Development, Features, and Data Sharing PoliciesPublication . Sá-Sousa, A.; Fonseca, J.; Pereira, A.; Ferreira, A.; Arrobas, A.; Mendes, A.; Drummond, M.; Videira, W.; Costa, T.; Farinha, P.; Soares, J.; Rocha, P.; Todo-Bom, A.; Sokolova, A.; Costa, A.; Fernandes, B.; Chaves Loureiro, C.; Longo, C.; Pardal, C.; Costa, C.; Cruz, C.; Loureiro, C.; Lopes, C.; Mesquita, D.; Faria, E.; Magalhães, E.; Menezes, F.; Todo-Bom, F.; Carvalho, F.; Regateiro, F.; Falcao, H.; Fernandes, I.; Gaspar-Marques, J.; Viana, J.; Ferreira, J.; Silva, J.; Simão, L.; Almeida, L.; Fernandes, L.; Ferreira, L.; van Zeller, M.; Quaresma, M.; Castanho, M.; André, N.; Cortesão, N.; Leiria-Pinto, P.; Pinto, P.; Rosa, P.; Carreiro-Martins, P.; Gerardo, R.; Silva, R.; Lucas, S.; Almeida, T.; Calvo, T.The Portuguese Severe Asthma Registry (Registo de Asma Grave Portugal, RAG) was developed by an open collaborative network of asthma specialists. RAG collects data from adults and pediatric severe asthma patients that despite treatment optimization and adequate management of comorbidities require step 4/5 treatment according to GINA recommendations. In this paper, we describe the development and implementation of RAG, its features, and data sharing policies. The contents and structure of RAG were defined in a multistep consensus process. A pilot version was pretested and iteratively improved. The selection of data elements for RAG considered other severe asthma registries, aiming at characterizing the patient's clinical status whilst avoiding overloading the standard workflow of the clinical appointment. Features of RAG include automatic assessment of eligibility, easy data input, and exportable data in natural language that can be pasted directly in patients' electronic health record and security features to enable data sharing (among researchers and with other international databases) without compromising patients' confidentiality. RAG is a national web-based disease registry of severe asthma patients, available at asmagrave.pt. It allows prospective clinical data collection, promotes standardized care and collaborative clinical research, and may contribute to inform evidence-based healthcare policies for severe asthma.