“Experiences of the burden of treatment”—Patient reports of facilitated subcutaneous immunoglobulin treatment in adults with immunodeficiency

Christina Petersson, Ramona Fust, Carina Hagstedt, Per Wågström, Åsa Nilsdotter‐Augustinsson

To evaluate patient-reported experiences of facilitated subcutaneous immunoglobulin treatment in adults with primary or secondary immunodeficiency. Decreased levels of circulating antibodies (humoral immunodeficiency) are often associated with higher infection rates which cause problems in daily living, for example symptoms of severe and recurrent bacterial infections that may cause chronic lung diseases. For some diagnoses, treatment with immunoglobulin becomes critical and life-long. The acceptability of administration forms is important to achieve adherence to treatment, and to increase quality of life for these patients. Convergent mixed method approach. A structured telephone interview with nine questions evaluated on a score scale about treatment experience, satisfaction, and ancillary supplies was used, followed by open-ended questions for each item. Prohibiting factors were revealed, exemplified by problems due to technical issues and ancillary supply issues. Promoting factors was shown by high a satisfaction when combining treatment with daily life as well as increased wellbeing. Facilitated subcutaneous immunoglobulin treatment led to fewer treatment sessions, with a time-saving aspect also described by high scores in the item concerning longer treatment interval. The opportunity to be given the best possible treatment plan adjusted for each patients' situation is central. Healthcare professionals should discuss the different aspects that can promote and inhibit the outcomes of treatment. The results can help professionals to understand different factors that may impinge on the patients' everyday life when they are forced into a lifelong treatment regimen. This knowledge is also important for nurses who have a responsibility to promote health concerning patients with long-term conditions in general. This article is protected by copyright. All rights reserved.