Patient experience of living with Secondary Immunodeficiency
Research type
Research Study
Full title
A multi-centre qualitative study to explore experiences of individuals living with Secondary Immunodeficiency who receive Subcutaneous Immunoglobulin Home Therapy.
IRAS ID
232023
Contact name
Karen Henderson
Contact email
Sponsor organisation
Papworth Hospital NHS Foundation Trust
Duration of Study in the UK
1 years, 0 months, 1 days
Research summary
This study will recruit patients who have developed a Secondary Immunodeficiency. Secondary Immunodeficiency disorders (SID) result in the failure of components of the immune system causing frequent, prolonged or unusual infections. There are many potential causes of SID including blood or bone marrow disorders, drugs (medicines), treatment for cancer and also some cancers can also be responsible for SID too. The main medicines that cause problems are those that target the immune system, including immunosuppressant drugs, immunotherapy and chemotherapy. This has resulted in a substantial increase of numbers of individuals requiring Specialist Immunology assessment for management of SID including treatment with Immunoglobulin therapy. Immunoglobulin therapy is often given as a lifelong treatment for SID aimed at reducing infection rate.
The purpose of this study is to gain an in-depth understanding of the experiences of individuals living with SID who receive Immunoglobulin Home Therapy. This will include identifying the support mechanisms and gaining an understanding of the factors that impact upon various aspects of their lives to be able to develop patient information and support for current and future patients.
Patient and Public Involvement/Engagement has been untaken with feedback from
NIHR Cambridge BRC Communications and PPI/E Team.REC name
East of England - Cambridge East Research Ethics Committee
REC reference
18/EE/0288
Date of REC Opinion
28 Sep 2018
REC opinion
Unfavourable Opinion