When a patient survives a subarachnoid hemorrhage (SAH), his or her family members and friends frequently exhibit anxiety and fear that may become a roadblock to recovery.
In a study of 69 patients recovering from strokes and their families, just 17.4% of the patients' "significant others" reported having 'no fear' of a recurrent SAH, compared with 34.3% of patients, while 21.7% of significant others reported having 'extreme fears' of such an event, compared with 18.8% of patients, according to Judith Covey, PhD, of Durham University in Stockton-on-Tees, England, and colleagues.
And patients with significant others who were most worried about recurrences tended to have worse self-reported quality-of-life outcomes, as measured by multi-regression analysis, they wrote in the July 23 issue of the Journal of Neurosurgery.
Using regression modeling, the researchers examined the impact of fear of recurrence on psychosocial outcomes in 69 patients recovering from SAH. Subarachnoid hemorrhages most often occur as a result of a ruptured aneurysm, arteriovenous malformation or a blow to the head, the researchers noted.
All patients were first-time sufferers who had been admitted to one of two British hospitals between May 2005 and August 2006; they were recruited as part of a larger study on SAH outcomes. SAH diagnosis was confirmed by CT scan or by the presence of blood or blood products in the cerebrospinal fluid. Aneurysms were confirmed by CT, MRI, or catheter angiography.
Roughly a year after the event, on average, spouses and other close relatives and non-relatives of the patients were found to be significantly more fearful of SAH recurrences than the patients themselves.
Extreme fear of recurrence among the family members and friends, but not the patients, were significant for explaining variances in four key quality of life measures: social functioning (8.1% variance); general health perception (7.7% variance), physical functioning (7.4% variance) and role limitations due to emotional problems (5.1% variance), the investigators found.
SAH survivors and their loved ones reported similar fears that the patient would suffer from another life-threatening health event, such as heart attack or lung cancer. But the only domain where the patient's own fear rating for recurrence of a brain bleed was close to significance involved limitations due to emotional problems (4.1% variance; P=0.074).
"The patient's fears of recurrence appeared to interfere a little with their work and daily activities," the authors noted. "However, the significant other's fears of recurrence interfered more -- not only with the patient's work and daily activities, but also with their social activities, ability to undertake moderate or vigorous physical activities and ratings of health in general."
According to the Brain Aneurysm Foundation, approximately 15% of patients with SAHs related to aneurysms die before reaching the hospital and four out of seven people who recover from a ruptured brain aneurysm will have disabilities.
But for most people who do recover, the risk of having a second aneurysmal SAH is very small unless the aneurysm has not been treated or has been inadequately treated with coiling or clipping procedures, neurovascular surgeon Roberto C. Heros, MD, of the University of Miami in Florida, wrote in an accompanying editorial. He cited several recent studies which all found the risk of recurrence among SAH survivors to be less than 1% around 4 years after the rupture.
Heros noted that many patients and their significant others believe their risk is much greater, recounting his experience attending a monthly "aneurysm clinic" that followed patients who had been successfully treated for an SAH.
"It became evident to me during that initial clinic that almost all these patients now had an 'aneurysm disease' and that they believed that they had a chronic illness, and many of them dreaded this checkup visit for fear that 'the aneurysm had come back'," he wrote.
Heros added that when he told patients that their chance of recurrence was very small, few of them believed him. "It seemed to me that after they had the 'disease' for a few years, they couldn't trust me to offer them an instantaneous 'cure,'" he wrote.
He got the clinic closed down and now counsels patients about their risk of recurrence soon after their treatment, explaining their individual risk factors.
He wrote that considering the small risk of recurrence, neurosurgeons should not feel obligated to recommend routine follow-up or brain imaging to patients who have been successfully treated for a ruptured cerebral aneurysm.
"Whether to do so or not should be an individualized decision based on a number of factors, of which one of the most important is the possible psychological impact on the patient and the family," he wrote.
He added that patients with a higher risk for recurrence -- including those whose aneurysm was incompletely clipped or coiled, those with multiple aneurysms, a family history of aneurysms or a disease predisposing to the formation and rupture -- should have periodic follow-ups. But even these patients, he noted, should be counseled in a way that reduces fears rather than reinforces them.
Primary source: Journal of Neurosugery
Source reference: Covery J, et al "Family and friends' fears of recurrence: impact on the patient's recovery after subarachnoid hemorrahage" J Neurosurg 2013; DOI: 10.3171/2013.5.JNS121688.