Research into quality of life in CVID

PID UK is delighted to announce funding for a multi-centre research project into quality of life (QoL) issues for people affected by CVID. Helping fund a research project is a first for PID UK so we are really excited at the prospect of serving the PID community in this way. We are also proud to become National Institute for Health Research (NIHR) non-commercial Partner, which means that any future funding will automatically get adoption for the NIHR portfolio.

Dr Mari Campbell, Clinical Psychologist at the Royal Free Hospital, heads up the study and describes the research below.  She says:

‘Research suggests that patients with immunodeficiency experience a poorer quality of life than the healthy population. However, to date, the measures used to assess this are general measures and not specific to patients with PID, and therefore may not pick up on the specific concerns or experiences of these individuals.

A team in Italy, lead by Professor Isabella Quinti, have developed a questionnaire (the CVID-QoL) which specifically asks about areas which can impact on the QoL of patients with CVID.  Our work will help confirm that the CVID QoL is valid when completed by patients in the UK, checking if the questionnaire is measuring what it is supposed to and reliable, generating consistent results each time the questionnaire is used.

PID UK funding will be supporting researchers at the Royal Free, Heartland and Stoke hospitals. First, the research team will invite six to eight patients with CVID to take part in a focus group to discuss the wording of the questions and the topics covered. They will then ask all patients, aged over 16, with CVID treated at their hospitals to take part in the project. Those who agree to participate will be asked to complete a number of questionnaires and information will be gathered from their medical notes.

It is hoped that the results of this study will be available by the end of 2020.’

Dr Matthew Buckland, Chair of our Medical Panel comments:  'An understanding of the impact of conditions such as CVID on quality of life is extremely important in the care of patients with PID.  PID UK have secured dedicated funding to support a researcher from the Royal Free (Dr Mari Campbell) in validating a quality of life scoring system in CVID.  In a further breakthrough for PID UK the submission was sent to the NIHR for adoption on the national portfolio.  Following a rigorous assessment process it was determined that PID UK should be considered a qualified partner for the NIHR and that future funded projects will automatically be eligible for prestigious NIHR adopted status.  This endeavour has furthered a specific project but also allows scope for PID UK to further support PID initiatives in the future.'