Alpha-1 Antitrypsin Deficiency Patients' Experiences with Self-Administering Intravenous Treatment

<bold>Background:</bold> Patients with alpha-1 antitrypsin deficiency are offered treatment with human alpha-1-proteinase inhibitor which delays progression of emphysema. The treatment is given intravenously once a week. Some patients live up to 130 kilometres away from the hospital. In 2022 patients were offered treatment at home or closer to home. In total, 11 out of 16 patients chose to administer treatment themselves. They received help for inserting the peripheral venous catheter from a relative, general practitioner or a nurse at the local health centre. <bold>Aim:</bold> To explore the patients' experiences of self-administering treatment with human alpha-1-proteinase inhibitor. Method: After eight months of treatment administered away from the hospital, seven patients were interviewed in August 2023. One male and six females, aged 50 to 76. Semi-structured interviews were conducted and analysed by inspiration of systematic text condensation by Malterud. <bold>Results:</bold> Three themes emerged from the analysis: 1) Better utilisation of resources related to e.g. economic resources and time spent. 2) Increased focus on everyday life instead of the disease. 3) Missing personal contact with other patients and nurses at the hospital. <bold>Conclusion:</bold> The patients with alpha-1 antitrypsin deficiency are very satisfied with self-administering treatment closer to/or at home, as they save time and money. Furthermore, as they do not have to visit the hospital weekly, the disease is less present in their everyday life. However, the patients miss talking with other patients and nurses at the hospital.

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Published
2024-09-14
DOI
https://doi.org/10.1183/13993003.congress-2024.pa2295
Primary Topic
Protease and Inhibitor Mechanisms
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article
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article

Alpha-1 Antitrypsin Deficiency Patients' Experiences with Self-Administering Intravenous Treatment

Birgit Refsgaard, N. Gregersen
Protease and Inhibitor Mechanisms
article

Alpha-1 Antitrypsin Deficiency Patients' Experiences with Self-Administering Intravenous Treatment

Birgit Refsgaard, N. Gregersen
article en

Abstract

<bold>Background:</bold> Patients with alpha-1 antitrypsin deficiency are offered treatment with human alpha-1-proteinase inhibitor which delays progression of emphysema. The treatment is given intravenously once a week. Some patients live up to 130 kilometres away from the hospital. In 2022 patients were offered treatment at home or closer to home. In total, 11 out of 16 patients chose to administer treatment themselves. They received help for inserting the peripheral venous catheter from a relative, general practitioner or a nurse at the local health centre. <bold>Aim:</bold> To explore the patients' experiences of self-administering treatment with human alpha-1-proteinase inhibitor. Method: After eight months of treatment administered away from the hospital, seven patients were interviewed in August 2023. One male and six females, aged 50 to 76. Semi-structured interviews were conducted and analysed by inspiration of systematic text condensation by Malterud. <bold>Results:</bold> Three themes emerged from the analysis: 1) Better utilisation of resources related to e.g. economic resources and time spent. 2) Increased focus on everyday life instead of the disease. 3) Missing personal contact with other patients and nurses at the hospital. <bold>Conclusion:</bold> The patients with alpha-1 antitrypsin deficiency are very satisfied with self-administering treatment closer to/or at home, as they save time and money. Furthermore, as they do not have to visit the hospital weekly, the disease is less present in their everyday life. However, the patients miss talking with other patients and nurses at the hospital.

Aarhus University Hospital (DK)
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Protease and Inhibitor Mechanisms
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