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Espanol T, Prevot J, Drabwell J, et al. Improving current immunoglobulin therapy for patients with primary immunodeficiency: quality of life and views on treatment. Patient Prefer Adherence. 2014;8:621-9doi: 10.2147/PPA.S60771.
Espanol, T., Prevot, J., Drabwell, J., Sondhi, S., & Olding, L. (2014). Improving current immunoglobulin therapy for patients with primary immunodeficiency: quality of life and views on treatment. Patient preference and adherence, 8621-9. https://doi.org/10.2147/PPA.S60771
Espanol, Teresa, et al. "Improving current immunoglobulin therapy for patients with primary immunodeficiency: quality of life and views on treatment." Patient preference and adherence vol. 8 (2014): 621-9. doi: https://doi.org/10.2147/PPA.S60771
Espanol T, Prevot J, Drabwell J, Sondhi S, Olding L. Improving current immunoglobulin therapy for patients with primary immunodeficiency: quality of life and views on treatment. Patient Prefer Adherence. 2014 May 02;8:621-9. doi: 10.2147/PPA.S60771. eCollection 2014. PMID: 24833896; PMCID: PMC4014377.
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Patient Prefer Adherence. 2014 May 02;8:621-9. doi: 10.2147/PPA.S60771. eCollection 2014.

Improving current immunoglobulin therapy for patients with primary immunodeficiency: quality of life and views on treatment.

Patient preference and adherence

Teresa Espanol, Johan Prevot, Jose Drabwell, Seema Sondhi, Laurence Olding

Affiliations

  1. Immunology Unit, Vall d'Hebron University Hospital, Barcelona, Spain.
  2. International Patient Organisation for Primary Immunodeficiencies, Cornwall, UK.
  3. Baxter Healthcare SA, Zurich, Switzerland.
  4. Bryter, London, UK.

PMID: 24833896 PMCID: PMC4014377 DOI: 10.2147/PPA.S60771

Abstract

BACKGROUND: Subcutaneous or intravenous immunoglobulin replacement is the mainstay of treatment for most patients with primary immunodeficiency disease (PID). The purpose of this study was to gain an understanding of how existing PID therapies affect patient lives and to identify desired improvements to immunoglobulin treatments.

METHODS: An online questionnaire was made available through the International Patient Organisation for Primary Immunodeficiencies to patients with PID and their caregivers regarding current treatment satisfaction, living with PID, and patient preferences using a conjoint approach. Health-related quality of life was canvassed via questionnaires using the Short Form 12 Health Survey and EuroQoL 5 Dimensions.

RESULTS: A total of 300 responded to the survey (72% patients with PID and 28% caregivers) from across 21 countries, mostly the UK, Sweden, Canada, France, Germany, and Spain. Fifty-three percent and 45% of patients received intravenous and subcutaneous therapy, respectively. Most respondents (76%) were satisfied with their current treatment, reflecting the benefits that immunoglobulin therapy provides for patient health and well-being. However, patients remained below the physical and mental well-being norms for health-related quality of life as determined by the questionnaire. All respondents expressed a desire for 4-weekly infusions, the ability to administer these at home, self-administration, shorter duration of administration, and fewer needle sticks.

CONCLUSION: The results of this survey highlight the importance of providing access to different treatment options and modes of administration to ensure individual patient needs are best met.

Keywords: conjoint analysis; immunoglobulins; patient needs; patient satisfaction; primary immunodeficiency; quality of life

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