Experiences of PNH patients on eculizumab treatment with remote consultations

Abstract

Title: Experiences PNH patients on eculizumab treatment with remote consultations Background: Due the COVID19-pandemic a shift took place from physical consultations to remote consultations in patients with Paroxysmal Nocturnal Hemoglobinuria (PNH). Currently, it is needful to gain knowledge about PNH patients’ perspective of remote consultations, because patient involvement is crucial in remote consultations and an increase of the use of remote consultations is expected. Research question: What are the experiences of PNH patients on eculizumab treatment with remote consultations? Method: An explorative generic qualitative research was performed from January to June 2021. Data was collected through semi-structured interviews with purposefully sampled patients. The interview guide consisted of the following topics: experiences of physical and remote consultations, differences between physical and remote consultations, and the use of technology. Thematic analysis was used for data-analysis. Results: Twelve patients with maximum variation applied to gender, age and travel distance were interviewed. Three main themes were derived from the data: personal pros and cons, confidence with technology, and future perspective. Patients described a remote consultation as a good addition to the physical consultations, but it is not seen as a definitive substitution. A preference has been expressed for an equal alternation between remote consultations and physical consultations. Conclusion: Several advantages and disadvantages of remote consultations were identified within the main themes. A majority of the patients considered the remote consultations as a positive experience, even patients who did not believe the remote consultations provided the best care. Recommendations: Remote consultations will be further implemented within PNH patients. Future longitudinal analysis regarding remote consultations should be performed in a larger group of patients. Also, research about the experiences of practitioners providing remote consultations and the economic factors is recommended.