An Investigation of Coping and Psychosocial Functioning in Persons with
Common Variable Immunodeficiency (CVID).

P.I.A, SUMMARY REPORT
Laura Edwards, Amanda O’Donovan, Dr Jenny Petrak
With the assistance of:  Dr Matthew Helbert and Caroline O'Grady March, 2003

Barts and The London NHS Trust
and The Primary Immunodeficiency Association (PiA)

Executive Summary

Common Variable Immunodeficiency (CVID) is the most common of the serious primary immunodeficiencies (PID). The symptoms of CVID are chronic and debilitating and clinical experience suggests that individuals may experience levels of psychological distress. There is, however, no previous published research into psychosocial functioning in individuals with primary immune disorders. This study was funded by the Primary Immunodeficiency Association (PIA) to investigate these issues in individuals with CVID.

The CVID study was conducted at multiple PID centres and with the participation of members of the PIA. Using quantitative and qualitative methodologies the study aimed to investigate coping, psychosocial functioning and quality of life. The quantitative arm involved collecting questionnaire data for statistical analysis and the qualitative arm involved collecting interview data to gain a more detailed picture of the individual's experience.

157 individuals completed a semi-structured questionnaire exploring medical history, role functioning, coping and psychological distress, and standard questionnaires. Fifteen individuals completed semi-structured interview regarding their experiences of having CVID prior to, at the time of and since their diagnosis.
Individuals experienced a median delay of 8.5 years to receive their diagnosis of CVID.
Reactions to diagnosis included relief, shock, anxiety, confusion, anger and disbelief.
Medical concerns included anxiety about acquiring infections through multiple infusions. Individuals were also concerned about participation in home versus hospital based treatment.

Participants felt supported after disclosing their diagnosis to family and friends although there was a perception that the general public were uninformed about CVID. This resulted in concerns about confusion of CVID with HIV/AIDS and associated stigma.
Living with CVID had a significant effect on various aspects of psychosocial functioning, coping and quality of life and a proportion of the participants reported high levels of anxiety and depression. Quality of life was generally lower in individuals with CVID compared to the general population.

Recommendations are made for how this research can be taken forward. This included improving patient support, raising GP and public awareness, and increasing the number of specialist services available. There is also an urgent need to explore psychosocial issues in other PID populations including young people.

The full version of this report will be made available as soon after its publication as possible.