Psychological distress after subarachnoid hemorrhage: patient support groups can help us better detect it

One-quarter of subarachnoid hemorrhage (SAH) survivors develop psychological distress. This impedes recovery. Limitations to existing care pathways mean that distress often goes undetected. We need to know how to better identify it.

Support groups for SAH exist in many countries. No research has been conducted on them. Distressed patients might be concentrated amongst them. If true, this could offer a low-cost way to help better identify distress. We conducted the first study to determine which survivors access such groups, their needs and compared them to the wider SAH population.

414 UK SAH survivors affiliated with national support groups were recruited. They completed a questionnaire, including validated measures of anxiety, depression and posttraumatic stress, and asked whether they had been examined or treated for distress post-SAH. Regression established factors associated with treatment.

Participants' mean age at SAH was 44.6 and 312 (75%) were female. Most (68.4%) reported a cerebral aneurysm as their SAH's cause and were treated with coiling. Median years since SAH were three. Over three-quarters of participants were experiencing clinical distress. Regression found distressed participants were twice as likely to have been examined and treated for distress. Nevertheless, 47% of distressed participants had not been examined for distress post-SAH and 55% had not been offered treatment.

Psychological distress is overrepresented amongst support groups. Members also tend to be younger and female. Establishing referral pathways from support groups to health-systems might improve detection of distress and allow the benefits of improved survival from SAH to be fully realized.