Cancer Exacts a High Emotional Toll on Spouses

A cancer diagnosis can take a heavy emotional toll on a patient’s spouse, even years after the diagnosis, new research shows.

In a study of more than 3 million Danes and Swedes, spouses of patients with cancer faced an increased risk of developing a psychiatric disorder, including substance abuse, depression, anxiety, and stress-related conditions, compared with peers whose spouse did not have cancer. The risk was higher for male spouses, those with preexisting psychiatric conditions, and in the first year following a spouse’s cancer diagnosis.

“The bottom-line is that psychiatric illness is exacerbated by a spouse’s diagnosis of cancer,” said Holly G. Prigerson, PhD, director of the Cornell Center for Research on End-of-Life Care, Weill Cornell Medical College, New York City, who wasn’t involved in the study.

The study was published online January 5 in JAMA Network Open. 

Previous research has shown that spouses of patients with cancer had a higher risk of depression, anxiety, and other psychiatric conditions, but few population-based studies in this group exist. The study authors, led by Kejia Hu, MD, of the Karolinska Institute in Stockholm, wanted to understand the spectrum of psychiatric disorders and risk factors that may exist in on a population level.

The findings are based on 546,321 spouses of patients with cancer in Denmark and Sweden followed for a median of 8.4 years and roughly 2.7 million spouses of individuals without cancer followed for a median of 7.6 years. The authors identified first clinical diagnoses of psychiatric disorders requiring inpatient or outpatient care in these populations using the Danish National Patient Registry, the Danish Psychiatric Central Research Register, the Swedish National Patient Register, and other registries.

Over the study period, the authors reported 37,830 cases (6.9%) of first-onset psychiatric disorders among spouses of patients with cancer, for an incidence rate of 6.8 per 1000 person-years, compared with 153,607 cases (5.6%) among spouses of cancer-free individuals (incidence rate of 5.9 per 1000 person-years).

While the between-group difference — 6.9% vs 5.6% — appears “small, these results are actually quite striking,” said Prigerson. The reason, Prigerson added, is these rates reflect new-onset cases excluding those with preexisting mental illness and cases extreme enough to result in psychiatric hospitalization or outpatient psychiatric treatment.

In the first year following a cancer diagnosis, the study investigators found that the risk for first-onset psychiatric disorders among spouses increased by 30% (adjusted hazard ratio [aHR], 1.30), especially depression (aHR, 1.38) and stress-related disorders (aHR, 2.04).

During the entire follow-up period, the risk of first-onset psychiatric disorders increased by 14% overall, with similar rates observed for diagnoses of substance abuse, depression, and stress-related disorders.

The risk for new psychiatric illness was most prominent (aHR, 1.41) among spouses of patients diagnosed with cancer of the lung, esophagus, pancreas, liver, or biliary passages, as these cancers carry a poor prognosis. Risk for new psychiatric illness was also greater for spouses of patients with an advanced tumor (aHR 1.31), and following the death of the patient (aHR, 1.29).

Men and individuals aged 40-79 had a slightly higher risk of first-onset psychiatric disorders compared with women and individuals in other age groups. Spouses with a lower household income also appeared to be more vulnerable to psychiatric disorders after cancer diagnosis.

In a secondary analysis of spouses with preexisting psychiatry illness, the risk of first-onset or recurrent psychiatric disorders increased by 23%.

Had the study been done in the United States, which does not have universal healthcare, these “numbers would probably be much higher,” said Asher Aladjem, MD, medical director of psychosocial services, Perlmutter Cancer Center, New York City, who wasn’t associated with this research. In the US, patients and their spouses deal with issues around insurance coverage and a fragmented healthcare system, which is a “big burden on any chronic or life-threatening illness,” he explained.

Prigerson added that her own research has shown that the mental health of patients and spousal caregivers can also undermine the end-of-life experience of the patient.

“Stress responses trigger avoidance of end-of-life discussions, advance care planning, and signing of Do Not Resuscitate orders, which result in family members witnessing the horrors of life-prolonging care that, itself, may prove psychologically traumatizing,” Prigerson said.  

To address this “all too common” situation, she and her colleagues have developed psychological approaches to target experiential avoidance and reduce the grief and psychological trauma of spouses of terminal cancer patients receiving critical care.

“We are finding that addressing the grief and trauma of spouses results not only in better care of dying cancer patients, but also fewer regrets and better mental health among the surviving spouses,” Prigerson said.

Support for the study was provided by the Swedish Cancer Society; Karolinska Institute; the Swedish Research Council for Health, Working Life and Welfare; the China Scholarship Council; the Novo Nordisk Foundation; the Independent Research Fund Denmark; the Nordic Cancer Union; and the Karen Elise Jensens Fund. Hu, Prigerson and Aladjem report no relevant financial relationships.

JAMA Netw Open. Published online January 5, 2023. Full text

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