Research Roundup updates as of April 2007"
Caregivers may be more discouraged than people with ALS
A study conducted at the University of Torino in Italy has found that when 31 people with ALS and their caregivers were interviewed separately as the disease progressed, the caregivers reported a significant increase in depression and a sense of being burdened. In contrast, those with ALS didn’t report a change in their quality of life or an increase in their level of depression.
|People with ALS and their caregivers report different levels of depression as the disease advances.
Adriano Chio and colleagues, who published their findings in the March 20 issue of Neurology, conducted structured interviews of the patients and caregivers at two points during the course of the disease, approximately nine months apart. Paid caregivers were excluded, as were ALS patients with obvious cognitive impairment. (The study originally had 55 couples, but 20 patients died, and four withdrew for other reasons.)
At the initial interview, caregivers reported a better quality of life than did patients; but in the second interview, the patients reported a higher life quality than did their caregivers.
Caregivers reported a significant increase in their perceived burden and a reduction in their quality of life. Lack of time for oneself was the main source of caregiver dissatisfaction.
In this study, the investigators say, the patients seemed aware that their caregivers were becoming more burdened over time, but their sense of themselves as a burden didn’t change.
The study’s authors suggest that people with ALS may, at least in some cases, lack empathy for their caregivers and say this could be because of reduced insight, related to subtle cognitive changes. They say more careful examinations of the mental status of those with ALS might help caregivers by providing them with deeper knowledge of the persons they care for.
“Psychological support for ALS caregivers is needed, and it should be supplied by ALS centers,” Chio said.
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Tracking ALS incidence across ethnic groups shows possible variation
The incidence of ALS may differ among ethnic groups, say researchers in Ireland and the United States who reviewed 40 years (1966 through 2006) of ALS population studies.
|Cultural differences may influence willingness to acknowledge mental distress.
Simon Cronin at Beaumont Hospital in Dublin and colleagues, who published their results in the March 27 issue of Neurology, found that the incidence (number of new cases per year) of ALS may be lower in African, Asian and Hispanic populations than it is in Caucasians (non-Hispanic whites).
However, the authors note several possible flaws in their conclusions. Among them are different methods used in the various studies; variation in the average age of death among populations, leaving fewer people of ALS-susceptible age in some areas compared to others; and differences in access to medical care, leading to underdiagnosis of ALS in some countries and among U.S. minorities.
The investigators say finding ALS incidence differences, if they exist, could provide further clues to both genetic and environmental contributors to ALS.
A variation in ALS incidence correlated with an ethnic group “would support the notion that genetic factors play a dominant role in the pathogenesis [origin] of the disease,” they write. If the risk of ALS is higher in a particular group, that population should be prioritized for study because their higher “genetic burden” might make detection of ALS-causing mutations easier, they say.
Identified differences in various populations might also find that some environmental factors, such as dietary habits or exposure to toxins, contribute to ALS.
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End-of-Life distress varies by country
When 92 people with end-stage ALS in three countries were compared, those in the United States reported the least amount of distress. Those in Israel reported the most, and German patients were between the other two groups.
Investigators at Columbia University in New York, the University of Munich (Germany) and Tel Aviv (Israel) University, who published their findings in the March 27 issue of Neurology, say patients at the three sites were similar with respect to social and demographic features, disease severity and nearness to death. (Those who opted for long-term ventilation via tracheostomy weren’t included.)
Steven Albert at Columbia (now at the University of Pittsburgh) and colleagues found that Israeli patients were the least likely to report religiousness or spirituality. However, even when the researchers took that factor out of the mix, reported distress levels by nationality didn’t change.
The nature of care provided, however, may have been a contributing factor. All three sites were multidisciplinary ALS centers, but they differed somewhat in their approach to care. German patients were less likely to use noninvasive ventilation than were the other two groups. Americans were routinely referred to hospice care, and nearly 80 percent used it, while the Israeli system didn’t provide hospice services. U.S. patients may also have been more aware of the option of long-term ventilation, which may have been comforting, even if it wasn’t chosen.
Nevertheless, the authors say they’re not certain why the Israelis reported severe distress and Americans reported so little. “More generally,” they say, “there may be country-level effects on patient willingness to report negative states or accept descriptions of states of mental health.”
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Genetic and environmental factors study half full
An MDA-supported study of the role of genetic and environmental factors in ALS reports it has enrolled about 50 percent of its participants (people with ALS and their healthy counterparts) so far. The study is being conducted through the Eleanor & Lou Gehrig MDA/ALS Center at Columbia University in New York, and participants who live in the New York metropolitan area are preferred. Participants must be able to speak for an approximately two-hour interview. Contact Mary Kilty at (212) 342-5529 or firstname.lastname@example.org.
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