Serial Quality of Life Assessment around Screening for Familial Intracranial Aneurysms: A Prospective Cohort Study

Introduction: Screening for intracranial aneurysms (IAs) is cost-effective in first-degree relatives of aneurysmal subarachnoid haemorrhage patients, but its psychosocial impact is largely unknown. Patients and Methods: A consecutive series of persons aged 20–70 years visiting the University Medical Centre Utrecht for first screening for familial IA was approached between 2017 and 2020. E-questionnaires were administered at six time points, consisting of the EQ-5D for health-related quality of life (QoL), HADS for emotional functioning, and USER-P for social participation. QoL outcomes were compared with the general population and between participants with a positive and negative screening for IA. Predictors of QoL outcomes were assessed with linear mixed effects models. Results: 105 participants from 75 families were included; in 10 (10%), an IA was found. During the first year after screening, we found no negative effect on QoL, except for a temporary decrease in QoL 6 months after screening in participants with a positive screen (EQ-5D −11.3 [95% CI: −21.7 to −0.8]). Factors associated with worse QoL were psychiatric disease (EQ-5D −10.3 [95% CI: −15.1 to −5.6]), physical complaints affecting mood (EQ-5D −8.1 [95% CI: −11.7 to −4.4]), and a passive coping style (EQ-5D decrease per point increase on the Utrecht Coping List −1.1 [95% CI: −1.5 to −0.6]). Discussion and Conclusion: We did not find a lasting negative effect on QoL during the first year after screening for familial IA. Predictors for a worse QoL were psychiatric disease, physical complaints affecting mood, and a passive coping style. This information can be used in counselling about familial IA screening.