Psychosocial impact of screening for intracranial aneurysms in relatives with familial subarachnoid hemorrhage.
OBJECTIVE
In families with > or =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 > or =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.


CONCLUSIONS
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.
Wermer
M J H
MJ
Department of Neurology, University Medical Center Utrecht, The Netherlands. m.wermer@neuro.azu.nl
van der Schaaf
I C
IC
Van Nunen
P
P
Bossuyt
P M M
PM
Anderson
C S
CS
Rinkel
G J E
GJ
D000328:Adult; D000368:Aged; D001007:Anxiety; D003376:Counseling; D003863:Depression; D005190:Family; D005192:Family Health; D005260:Female; D020022:Genetic Predisposition to Disease; D006801:Humans; D002532:Intracranial Aneurysm / Q000175:diagnosis* / Q000235:genetics / Q000523:psychology; D008297:Male; D008403:Mass Screening / Q000379:methods* / Q000523:psychology*; D008875:Middle Aged; D011788:Quality of Life; D012042:Registries; D012306:Risk; D012307:Risk Factors; D012737:Sex Factors; D013345:Subarachnoid Hemorrhage / Q000175:diagnosis* / Q000523:psychology*; D011795:Surveys and Questionnaires; D016896:Treatment Outcome