IDIDPSYCH
Research type
Research Study
Full title
Impact of a Diagnosis of primary or secondary ImmunoDeficiency on PSYChological Health in the United Kingdom.
IRAS ID
314588
Contact name
Mari Campbell
Contact email
Sponsor organisation
Royal Free London NHS Foundation Trust
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
Whilst research within the field of primary immunodeficiency suggests that patients experience poorer quality of life (QoL) than the general population, the quality of life and mental health needs of patients with immunodeficiency in the UK has not been extensively examined (Edwards et al., 2003; Espanol et al., 2012; Booker et al., 2007; Quinti et al., 2012). Moreover, Pulvirenti et al. (2020) found that patients with common variable immunodeficiency reported higher anxiety and depression during the initial surge of COVID-19 in Italy, there has been no further research to date into the impact of COVID-19 and the consequences of interventions to reduce COVID-19 viral transmission on mental health on the mental health of patients with Primary and Secondary Immunodeficiency in the UK. Therefore, this project aims to describe the quality of life and mental health of patients with primary or secondary immunodeficiency compared to healthy population norms, and the impact of COVID-19 on the quality of life and mental health of these patients. This understanding could help to inform clinicians of patient needs and enable the improvement of services accordingly.
Immunology patients at7 centres across the UK aged 16 or over, that have been diagnosed with a confirmed primary or secondary immunodeficiency will be invited to participate in the project. Following completion of informed consent, participants will be asked to complete online questionnaires every six months for two years. Measures used in the questionnaires will include the SF-36 (quality of life) GAD-7 (anxiety), PHQ-8 (depression), FACIT-Fatigue (fatigue) and ISQ (insomnia), and additional information may be gathered by the local clinical teams from medical notes.
The results of this study will be fed back to clinicians, patients and families through conferences and patient meetings, publication in medical journals and patients newsletters.
REC name
Wales REC 6
REC reference
22/WA/0302
Date of REC Opinion
21 Oct 2022
REC opinion
Favourable Opinion