Objective burden, caregiver psychological distress, and patient religion and quality of life are associated with high-intensity burden of care among caregivers of advanced cancer patients in a Latino population.

OBJECTIVES: Family caregivers (FCs) of cancer patients experience burden of care. The aims of this study are to describe the caregiving phenomenon among FCs of advanced cancer patients in a Latino community and to identify caregiver and patient characteristics associated with high-intensity subjective caregiver burden. METHODS: In this cross-sectional study, advanced cancer patient-caregiver dyads assessed at a Palliative Care Unit in Santiago, Chile, enrolled in a longitudinal observational study were included. FCs completed questions to describe the caregiving phenomenon and surveys to assess burden of care, psychological distress, and perception of patients' symptoms; patients completed surveys to assess physical distress and quality of life (QOL). We explored associations between high-intensity subjective caregiver burden with caregiver and patient variables. RESULTS: Two hundred seven dyads were analyzed. FCs were on average 50 years old and 75% female. Thirty-two percent of FCs experienced high-intensity subjective burden of care. Eighty two percent of FCs took care of the patient daily and 31% took care of the patient alone. In univariate analysis, high-intensity caregiver burden was associated with caregiver depression (59% vs. 27%; p < 0.001), anxiety (86% vs. 67%; p = 0.003), caring for the patient alone (45% vs. 24%; p = 0.002), perception of patient symptom distress, patient religion, and worse patient QOL (mean [standard deviation] 58 [33] vs. 68 [27]; p = 0.03). In multivariate analysis, FC depression (OR [95% confidence interval] 3.07 [1.43-6.60]; p = 0.004), anxiety (3.02 [1.19-7.71]; p = 0.021), caring for the patient alone (2.69 [1.26-5.77]; p = 0.011), caregiver perception of patient's fatigue (1.26 [1.01-1.58]; p = 0.04), and patient's religion (3.90 [1.21-12.61]; p = 0.02) were independently associated with caregiver burden. SIGNIFICANCE OF RESULTS: FCs of advanced cancer patients in a Latino community frequently experience high-intensity burden of care and are exposed to measures of objective burden. High-intensity burden is associated with both caregiver and patient factors. Policies should aim to make interventions on patient-caregiver dyads to decrease caregiving burden among Latinos.

Spiritual Pain Is Associated with Decreased Quality of Life in Advanced Cancer Patients in Palliative Care: An Exploratory Study.

Background: Improving quality of life (QOL) is important in cancer palliative care (PC) patients. "Spiritual pain" (SP) is common in this population, but it is unknown how it affects QOL. Objective: To study the associations between SP and QOL in cancer patients in PC. Design: Cross-sectional. Settings/Subjects: Cancer patients assessed at a PC clinic in Puente Alto, Chile, were enrolled in a longitudinal study to characterize patients' end of life. Inclusion criteria included age ≥18, a primary caregiver, not having delirium, and a Karnofsky performance status (KPS) ≤80. Measurements: After consenting patients completed baseline surveys that included demographics, single-item questions to assess SP (0-10), financial distress, spirituality-related variables and questionnaires to assess QOL (0-100), and physical (Global distress score-physical) and psychological distress (Hospital Anxiety and Depression Scale), baseline data analyses to explore associations between SP and QOL were adjusted for potential confounders. Results: Two hundred and eight patients were enrolled: mean age was 64, 50% were female, and 67% had SP. In univariate analysis, SP was significantly associated with lower QOL (coefficient [95% confidence interval]: -1.88 [-2.93 to -0.84], p < 0.001). Lower QOL was also associated with being younger, lower KPS, higher physical distress, having anxiety or depression, and decreased religiosity and religious coping. In the multivariate analysis, QOL remained independently associated with SP (-1.25 [-2.35; to -0.15], p < 0.026), religious coping (11.74 [1.09 to 22.38], p < 0.031), and physical distress (-0.52 [-0.89 to -0.16], p < 0.005). Conclusions: SP is associated with QOL in cancer patients in PC. SP should be regularly assessed to plan for interventions that could impact QOL. More research is needed.

Validation of the Spanish Version of the Quality of Dying and Death Questionnaire (QODD-ESP) in a Home-Based Cancer Palliative Care Program and Development of the QODD-ESP-12.

CONTEXT: Improving quality of death (QOD) is a key goal in palliative care (PC). To our knowledge, no instruments to measure QOD have been validated in Spanish. OBJECTIVES: The goals of this study were to validate the Spanish version of the quality of dying and death (QODD) questionnaire and to develop and validate a shortened version of this instrument by phone interview. METHODS: We enrolled caregivers (CGs) of consecutive deceased cancer patients who participated in a single PC clinic. CGs were contacted by phone between 4 and 12 weeks after patients' death and completed the Spanish QODD (QODD-ESP). A question assessing quality of life during last week of life was included. A 12-item QODD (QODD-ESP-12) was developed. Reliability, convergent validity, and construct validity were estimated for both versions. RESULTS: About 150 (50%) of 302 CGs completed the QODD-ESP. Patient's mean age (SD) was 67 (14); 71 (47%) were females, and 131 (87%) died at home. CGs' mean age (SD) was 51 (13); 128 (85%) were females. Mean QODD-ESP score was 69 (range 35-96). Kaiser-Meyer-Olkin measure of sampling adequacy was 0.322, not supporting the use of factorial analysis to assess the existence of an underlying construct. Mean QODD-ESP-12 score was 69 (range 31-97). Correlation with last week quality of life was 0.306 (P < 0.01). Confirmatory factorial analysis of QODD-ESP-12 showed that data fitted well Downey's four factors; Chi-square test = 6.32 (degrees of freedom = 60), P = 0.394 comparative fit index = 0.988; Tucker-Lewis Index = 0.987, and root mean square error of approximation = 0.016 (95% CI 0-0.052). CONCLUSION: QODD-ESP-12 is a reliable and valid instrument with good psychometric properties and can be used to assess QOD in a Spanish-speaking cancer PC population by phone interview.