It’s long-term, well it’s for life basically: Understanding and exploring the burden of immunoglobulin treatment in patients with primary immunodeficiency disorders

  • Georgina Jones | G.L.Jones@leedsbeckett.ac.uk Department of Psychology, School of Social Sciences, Leeds Beckett University, Leeds, United Kingdom.
  • Eva Brown Hajdukova Parexel Access Consulting, Parexel International, London, United Kingdom.
  • Esmee Hanna Allied Health Sciences Research, De Montfort University, Leicester, United Kingdom.
  • Rosie Duncan School of Health and Related Research, University of Sheffield, Sheffield, United Kingdom.
  • Brendan Gough Department of Psychology, School of Social Sciences, Leeds Beckett University, Leeds, United Kingdom.
  • Jane Hughes School of Health and Related Research, University of Sheffield, Sheffield, United Kingdom.
  • Debbie Hughes Clinical Immunology and Allergy Unit, Northern General Hospital, Sheffield Teaching Hospitals and NHS Foundation Trust, Sheffield, United Kingdom.
  • Fran Ashworth Clinical Immunology and Allergy Unit, Northern General Hospital, Sheffield Teaching Hospitals and NHS Foundation Trust, Sheffield, United Kingdom.
  • Johan Prevot International Patient Organisation for Primary Immunodeficiencies, Rocky Bottom, Trerieve, Downderry, Cornwall, United Kingdom.
  • Jose Drabwell International Patient Organisation for Primary Immunodeficiencies, Rocky Bottom, Trerieve, Downderry, Cornwall, United Kingdom.
  • Leire Solis International Patient Organisation for Primary Immunodeficiencies, Rocky Bottom, Trerieve, Downderry, Cornwall, United Kingdom.
  • Nizar Mahlaoui French National Reference Center for Primary Immune Deficiencies (CEREDIH), Necker Enfants Malades University Hospital, Assistance Publique-Hôpitaux de Paris, Paris, France; Pediatric Immuno-Haematology and Rheumatology Unit, Necker Enfants Malades University Hospital, Assistance Publique-Hôpitaux de Paris, Paris, France.
  • Anna Shrimpton Clinical Immunology and Allergy Unit, Northern General Hospital, Sheffield Teaching Hospitals and NHS Foundation Trust, Sheffield, United Kingdom.

Abstract

This paper describes the burden of receiving immunoglobulin (Ig) treatment from the perspective of patients diagnosed with a Primary Immunodeficiency (PID). Thirty semi-structured interviews with patients receiving intravenous (n=21) and subcutaneous immunoglobulin (n=9) therapy, either at home or in hospital were undertaken. Underpinned by a phenomenological theoretical framework, and using a qualitative, inductive thematic approach to prioritise patients’ concerns, we identified that Ig treatment requires considerable effort by the patient, particularly in relation to the amount of time, organization and planning that is needed. They also face numerous physical, social, relationship, emotional, role functioning, travelling, and financial challenges in their effort to undergo and maintain their infusions and care for their health. Some qualitative differences in treatment burden were noted between home and hospital settings which contributed to non-adherence to those regimes. Immunoglobulin treatment burden is complex and influenced by therapeutic mode and setting and the personal circumstances of the patient. As choice over treatment method appears to be mainly informed by lifestyle needs, PID patients may benefit from more information about these potential Ig lifestyle influences when selecting which form of treatment to take together with their health professional.

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Published
2021-02-25
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Original Articles
Keywords:
Primary immunodeficiency, immunoglobulin treatment, qualitative research, thematic analysis
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How to Cite
Jones, Georgina, Eva Brown Hajdukova, Esmee Hanna, Rosie Duncan, Brendan Gough, Jane Hughes, Debbie Hughes, Fran Ashworth, Johan Prevot, Jose Drabwell, Leire Solis, Nizar Mahlaoui, and Anna Shrimpton. 2021. “It’s Long-Term, Well it’s for Life Basically: Understanding and Exploring the Burden of Immunoglobulin Treatment in Patients With Primary Immunodeficiency Disorders”. Qualitative Research in Medicine and Healthcare 4 (3). https://doi.org/10.4081/qrmh.2020.9564.