By: Charles Bankhead
From: medpagetoday.com
Psychological morbidity in 83% of caregivers for patients with terminal cancer
More than 80% of caregivers for patients with terminal cancer exhibited clinically significant psychological distress, a British survey showed.
Survey responses from 1,500 adult caregivers showed that 83% had clinically significant psychological morbidity, as defined by scores on a validated general health questionnaire. Across all age groups, the rates of distress were five to seven times higher as compared with estimates for the general population.
Respondents also had worse general health status as compared with the general population, Gunn Grande, PhD, of the University of Manchester in England, and co-authors concluded in their study in Palliative Medicine.
“We were aware that carers’ psychological health suffers when caring for the terminally ill, but we were surprised at the sheer scale of the problem,” Grande said in a statement. “We found that the vast majority of carers suffered psychological morbidity at a level where further clinical investigation is recommended and where, for instance, their ability to concentrate, make decisions, and deal with problems may be affected.”
The study reinforces a large existing volume of existing evidence that caring for terminally ill patients imposes a heavy psychological toll on caregivers, said Lidia Schapira, MD, of Stanford Health Care in California
“It’s not a ground-breaking study, but it does add data to the field that’s emerging to document the suffering of caregivers,” said Schapira, who is also editor in chief of the American Society of Clinical Oncology’s Cancer.Net patient information site.
The findings represented responses from fewer than 30% of caregivers who received the questionnaire, raising questions about how representative the study population might be with respect to caregivers in the United States, she noted. Additionally, the caregivers were contacted following the death of a relative with cancer, complicating efforts to separate the distress associated with caregiving from that associated with bereavement.
Despite those limitations, the study “is a serious effort to capture the effects, the repercussions associated with caregiving for terminally ill patients,” said Schapira.
Grande and co-authors acknowledged recognition of the adverse impact of caring for terminally ill patients on caregivers’ own health. The objective of the study was to provide information about the magnitude of the adverse effect, which previous studies failed to capture, the team explained.
Prior studies often included results for specific types of psychological conditions, such as anxiety or depression, although reported rates were higher as compared with the general population. Others assessed overall psychological morbidity but did not include population-level data, used nonstandard assessment tools, or did not capture caregivers’ distress during the end-of-life period.
The investigators mailed survey materials to 5,271 adults in England who registered relatives who died of cancer during the first 2 weeks of May 2015. The materials included the General Health Questionnaire-12 (GHQ-12, psychological health) and the EuroQoL EQ-Visual Analog Scale (general health status) questionnaires. The surveys were sent 4 weeks after the death of the relative and focused on the health status of the caregivers during the last 3 months of the relatives’ lives.
Subsequently, 1,504 (28.5%) caregivers responded to the request for information. For comparison, the authors used data from a contemporary national health survey involving 6,500-6,800 residents of England.
The data showed that 83% of the survey respondents had significant psychological morbidity, defined as a GHQ-12 score ≥4. That contrasted with 15% of the general population. Across age groups from 18-24 to ≥75, the prevalence of significant psychological distress was five to seven times higher among the caregivers than among the general population.
The median GHQ-12 score across age groups was 6-8 for the caregivers (4 indicates “caseness,” or a need for follow-up) as compared with 0 in the general population. Women caregivers had higher scores than men did. The proportion of caregivers who met the criteria for caseness varied from 90% for those ages 25-54 to 80% for older groups. Caseness rates in the general population ranged from 11% to 17%. Women had higher scores than men.
Caregivers had lower general health scores (median of 75 versus 80 for the general population). Younger caregivers had lower scores than did their older counterparts.
“This study found far higher prevalence of psychological morbidity among carers during end-of-life caregiving than indicated by previous research, with clinically significant morbidity being the norm,” the authors concluded.
“This represents a large, hitherto unrecognized public health burden, the consequences of which need to be further established. If results are representative of end-of-life carers in England in general, over 400,000 of the estimated half a million end-of-life carers per annum may be at risk for substantial psychological morbidity, with effects likely to carry on into bereavement.”
Barbara Jacoby is an award winning blogger that has contributed her writings to multiple online publications that have touched readers worldwide.