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Projeto de investigação
SMARTER - Self-Management App for eaRly deTection and minimisation of asthma Exacerbations in childRen: development and evaluation
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Patient experience in home respiratory therapies : where we are and where to go
Publication . Caneiras, Catia; Jácome, Cristina; Mayoralas-Alises, Sagrario; Calvo, José Ramon; Fonseca, João Almeida; Escarrabill, Joan; Winck, João Carlos
The increasing number of patients receiving home respiratory therapy (HRT) is imposing a major impact on routine clinical care and healthcare system sustainability. The current challenge is to continue to guarantee access to HRT while maintaining the quality of care. The patient experience is a cornerstone of high-quality healthcare and an emergent area of clinical research. This review approaches the assessment of the patient experience in the context of HRT while highlighting the European contribution to this body of knowledge. This review demonstrates that research in this area is still limited, with no example of a prescription model that incorporates the patient experience as an outcome and no specific patient-reported experience measures (PREMs) available. This work also shows that Europe is leading the research on HRT provision. The development of a specific PREM and the integration of PREMs into the assessment of prescription models should be clinical research priorities in the next several years.
Patient experience with home respiratory therapies in Portugal : it is time to move forward
Publication . Caneiras, Catia; Jácome, Cristina; Mayoralas-Alises, Sagrario; Ramon-Calvo, José; Fonseca, João Almeida; Diaz Lobato, Salvador; Escarrabill, Joan; Winck, João Carlos
The number of patients needing home respiratory therapies (HRT), such as long-term oxygen therapy and/or home mechanical ventilation (HMV) in Portugal is increasing. These therapies help individuals to improve function and live with greater quality of life; and assist them to remain at home, avoiding hospital emergencies, unscheduled consultations and hospitalizations.4 Data from a recently published work confirms this increasing trend: in 2018, almost 80% of the HMV specialized centres were treating >30 new patients per year, currently treating >200 patients in total.5 Moreover, the director of the National Program for Respiratory Diseases, based on the prescription database, showed that in 2017 the prevalence rose to a record of 80/100.000, very close to France, the country with the highest figures in Europe (C Bárbara 2019, personal communication, May 30th, Jornadas de Pneumologia CH Entre Douro e Vouga). An innovative national, patient-centred care home respiratory model was implemented in Portugal in 20146 and the major challenges are to create key performance indicators in order to maintain the access to HRT, national healthcare service sustainability and quality of care.
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Fundação para a Ciência e a Tecnologia
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SFRH/BPD/115169/2016