Psychological Distress among Caregivers for Patients Who Die of Cancer: A Preliminary Study in Japan

In Japan, little is known of the severity of and factors associated with psychological distress among caregivers of patients with advanced or recurrent cancer who die.

This prospective cohort study of cancer patients at the National Cancer Center Hospital East, Japan, and their caregivers followed the participants from the initial palliative care consultation (T1) to 6 months (T2) and 13 months (T3) after the patient's death. At T1, patients and caregivers were interviewed separately. After T1, telephone interviews were conducted periodically, and a mail survey was distributed at T2 and T3. The Patient Health Questionnaire-9 (PHQ-9) was used to assess depression, and the Distress and Impact Thermometer (DIT) was used to screen for psychological distress. Items on end-of-life attitudes, including awareness, discussion, and willingness of cancer care and death, were developed.

Thirty-one of 86 eligible pairs participated in this study. The participation rate was low (36%) and enrollment was thus halted. Data were collected up to T3 for 22 pairs (completion rate 71%). PHQ-9 scores at T2 and T3 were higher than at T1, but the difference was not significant (p = 0.07). PHQ-9 score at T3 was significantly associated with caregiver PHQ-9 and distress at T1, with patient distress and impact at T1, and with caregiver health problems at T2.

Caregiver depression persisted up to 13 months after the patient's death, which suggests that pre-bereavement screening with the DIT might be useful. The present paired enrollment process requires improvement.