Patient and caregiver participants complete basic demographic and health information questionnaires (including patient function) at baseline. Caregivers complete psychosocial questionnaires at baseline, 4 weeks, and 8 weeks, including measures of burden, distress, and their own and the patients’ health care utilization. Patients complete assessments of distress at baseline and 8 weeks. All data is collected, stored, and managed in secure REDCap databases.

Caregiver burden is assessed using the Zarit Burden Interview Short Form [42], a 12-item widely-used measure of burden. Items are summed and higher scores reflect more burden. The scale has been validated in populations of advanced cancer caregivers and has very good internal consistency and discriminative ability [48]. The scale has also been used to identify changes over time [49].

Distress is assessed for both patients and caregivers using the Patient Health Questionnaire-8 (PHQ-8) [43] and the General Anxiety Disorder-7 (GAD-7) [44]. The PHQ-8 is an 8-item commonly-used measure of depression based on the Diagnostic and Statistical Manual, 4th edition (DSM-IV) criteria for depressive disorders, and has been shown to have good reliability and validity [43]. The measure has previously been used in studies of cancer patients and caregivers [50]. Each item is rated from 0 to 3, then all 8 items are summed to create a total score ranging from 0 to 24, with higher scores indicating worse depression symptoms; established cutoffs exist [43]. The PHQ-8 is similar to the PHQ-9 (minus a question relevant to suicidality), which has been shown to be sensitive to change [51]. The GAD-7 is a 7 item commonly-used measure of anxiety based on the DSM-IV criteria for Generalized Anxiety Disorder, which has been shown to have good reliability and validity [44]. The GAD-7 has been used extensively in both cancer patients and cancer caregivers (e.g., [50, 52]). Each item is rated from 0 to 3, then all 7 items are summed to create a total score ranging from 0 to 21, with higher scores indicating worse anxiety symptoms; established cutoffs exist [44, 51]. The GAD-7 has been shown to be sensitive to change [53].

Health Care Utilization is measured using a self-reported health care utilization questionnaire developed in previous research [54]. Caregivers will be asked to report on their own and the patient’s health care utilization including use of social work or other support services, outpatient appointments, ER visits, and hospitalization, and whether use was related to the caregiver role or stress/ the patient’s cancer.

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