A qualitative study of patient and carer experiences with home respiratory therapies: Long-term oxygen therapy and home mechanical ventilation

The Portuguese Model of Home Respiratory Care: Healthcare Professionals’ Perspective

“…The information that patients receive and remember is critical for their future adherence to treatment [25] and their safety, and thus improving efficiency in education is critical. This is in line with Portuguese patients' perspective [9]. This need has also been highlighted patients on home oxygen therapy from Spain [20] and by patients with idiopathic pulmonary fibrosis from 4 European countries [21].…”

“…Access and support provided from hospital care teams was distinct across centers, with some being easily available both presential or by phone outside scheduled appointments, and others not. Access issues were also raised by patients and carers [9], which is not surprising considering the strain imposed by the growing number of patients needing HRT to hospital services. Access could be improved through scheduled follow-up phone/videoconference appointments and telemonitoring strategies, as suggested by HCPs.…”

“…Education of patients at the time of the initial prescription of HRT is a good example of the absence of a multidisciplinary and integrative approach. In most cases information about the need of HRT is the responsibility of the pulmonologist (or other medical specialists) during appointment, that recognize that content provided depends on the patients' literacy and commonly do not include discussion of possible adverse events [9]. It was interesting to notice that pulmonologists considered there was space for doubts during consultations, while patients had an opposite experience [9].…”

“…In most cases information about the need of HRT is the responsibility of the pulmonologist (or other medical specialists) during appointment, that recognize that content provided depends on the patients' literacy and commonly do not include discussion of possible adverse events [9]. It was interesting to notice that pulmonologists considered there was space for doubts during consultations, while patients had an opposite experience [9]. The importance of adequate time to ask questions was also raised by patients from other countries, especially at the point of diagnosis [21], as the specialist physician and centre are considered their primary source of information.…”

“…A recent study about the experience of patients receiving HRT and their carers showed a general good perception of the care received, while identifying specific points where improvements are needed: particularly regarding navigability issues, prescriptions renewals burden and articulation between hospital, primary care, and home care teams [9]. However, the perspective of healthcare professionals is yet to be explored.…”