Published Online
on March 3, 2005

A more recent version of this article appeared on April 1, 2005

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Submitted on October 12, 2004
Revised on December 10, 2004
Accepted on January 4, 2005

Psychosocial Impact of Screening for Intracranial Aneurysms in Relatives With Familial Subarachnoid Hemorrhage

M. J.H. Wermer MD^*; I. C. van der Schaaf MD; P. Van Nunen MSc; P. M.M. Bossuyt PhD; C. S. Anderson PhD, FRACP; and G. J.E. Rinkel MD

From the Departments of Neurology (M.J.H.W., P.V.N., G.J.E.R.) and Radiology (I.C.v.d.S.), University Medical Center Utrecht, The Netherlands; the Department of Clinical Epidemiology and Biostatistics (P.M.M.B.), Academic Medical Center Amsterdam, The Netherlands; and the Clinical Trials Research Unit (C.S.A.), Faculty of Medicine and Health Sciences, University of Auckland, New Zealand.

^* To whom correspondence should be addressed. E-mail: m.wermer{at}neuro.azu.nl.

Background and Purpose--In families with 2 relatives with intracranial aneurysms (IAs), screening for IAs in asymptomatic first-degree relatives is often recommended. We assessed the long-term psychosocial impact of such screening.

Methods--We identified all persons with IA (screen-positives) and matched them for age and sex with 2 controls without IA (screen-negatives) from hospital-based registers of familial IA. Persons underwent telephone interviews using questionnaires that covered the areas of psychosocial impact of screening, health-related quality of life (HRQoL), and mood. Data were compared between screen-positives and screen-negatives, and with reference populations.

Results--Overall, 105 persons from 33 families with IA were included, of whom 35 were screen-positive and 70 were screen-negative. Of the screen-positives, 12 (44%) had reduced their work and 23 (66%) had experienced changes in 1 area of independence, self-esteem, future outlook, or personal relationships. In contrast, only 1 (2%) screen-negative person had stopped working and 12 (17%) others had experienced changes in their self-esteem, future outlook, or relationships. Screen-positives had lower HRQoL compared with screen-negatives and the reference population, whereas both screen groups had higher mean depression scores than the reference population. Despite these effects, only 3 persons regretted participating in screening.

Conclusion--Although screening for IA is an important preventative strategy in high-risk individuals, it is associated with considerable psychosocial effects, both positive and negative. Greater awareness of such outcomes, and appropriate intervention where necessary, would appear to be a necessary component of IA screening programs.

Key words: aneurysm • quality of life • subarachnoid hemorrhage

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