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"Experiences of the burden of treatment" - patient-reports of facilitated subcutaneous immunoglobulin treatment in adults with immunodeficiency.
School of Health and Welfare at Jönköping University, Region Jönköping Council, Sweden.
Region Östergötland, Heart and Medicine Center, Department of Infectious Diseases.
Region Hospital of Ryhov, Jönköping, Sweden..
Linköping University, Department of Clinical and Experimental Medicine, Division of Microbiology and Molecular Medicine. Linköping University, Faculty of Medicine and Health Sciences. Region Hospital of Ryhov, Jönköping, Sweden.
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2018 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 27, no 23-24, p. 4270-4278Article in journal (Refereed) Published
Abstract [en]

AIMS AND OBJECTIVES: To evaluate patient-reported experiences of facilitated subcutaneous immunoglobulin treatment in adults with primary or secondary immunodeficiency.

BACKGROUND: 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.

DESIGN: Convergent mixed method approach.

METHODS: 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.

RESULTS: 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.

CONCLUSIONS: 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.

RELEVANCE TO CLINICAL PRACTICE: 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.

Place, publisher, year, edition, pages
John Wiley & Sons, 2018. Vol. 27, no 23-24, p. 4270-4278
Keywords [en]
Facilitated subcutaneous immunoglobulin, immunodeficiency, long-term conditions, adherence, burden of treatment, convergent mixed-method, patient preferences, self-management
National Category
Infectious Medicine
Identifiers
URN: urn:nbn:se:liu:diva-148996DOI: 10.1111/jocn.14580ISI: 000449828900006PubMedID: 29917296OAI: oai:DiVA.org:liu-148996DiVA, id: diva2:1223146
Note

Funding agencies: Shire

Available from: 2018-06-25 Created: 2018-06-25 Last updated: 2018-12-03

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Vågström, PerNilsdotter-Augustinsson, Åsa
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Department of Infectious DiseasesDivision of Microbiology and Molecular MedicineFaculty of Medicine and Health Sciences
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