Prevalence and Predictors of Distress, Anxiety, Depression, and Quality of Life in Bereaved Family Caregivers of Patients With Advanced Cancer.

OBJECTIVE: To investigate prevalence and predictors of postloss distress, depressive and anxiety symptoms, and quality of life among bereaved family caregivers of patients with advanced cancer. METHODS: Prospective multicenter study. Family caregivers (N = 160, mean age 56.8 years, 66% female) completed validated outcome measures (Distress Thermometer, Generalized Anxiety Disorder 7-item scale, Patient Health Questionnaire depression module 9-item scale, SF-8 Health Survey Questionnaire) 6 months after patient's discharge or death at specialist inpatient palliative care ward. RESULTS: Clinically relevant distress was observed in 82% with sadness (89%), exhaustion (74%), sleeping problems (68%), loneliness (53%), and sorrows (52%) being the most common distress-causing problems. Moderate/severe anxiety and depressive symptoms were observed in 27% and 35%, respectively. Compared to an adjusted norm sample, quality of life was significantly impaired with exception of "bodily pain" and physical component score. Preloss caregiving (odds ratio [OR] 2.195) and higher preloss distress (OR 1.345) predicted high postloss distress. Utilization of psychosocial support services (OR 2.936) and higher preloss anxiety symptoms (OR 1.292) predicted moderate/severe anxiety symptoms, lower preloss physical quality of life (OR 0.952), and higher preloss depressive symptoms (OR 1.115) predicted moderate/severe depressive symptoms. CONCLUSION: Preloss mental burden showed to be a consistent predictor for postloss burden and should be addressed during palliative care. Future research should examine specific caregiver-directed interventions during specialist palliative care.

Psychological burden in family caregivers of patients with advanced cancer at initiation of specialist inpatient palliative care.

BACKGROUND: This study prospectively evaluated distress, depressive and anxiety symptoms as well as associated factors in family caregivers (FC) of advanced cancer patients at initiation of specialist inpatient palliative care. METHODS: Within 72 h after the patient's first admission, FCs were asked to complete German versions of the Distress Thermometer, Generalized Anxiety Disorder 7-item scale (GAD-7), Patient Health Questionnaire depression module 9-item scale (PHQ-9) for outcome measure. Multivariate logistic regression analyses were used to identify associated factors. RESULTS: In 232 FCs (62% spouses/partners), mean level of distress was 7.9 (SD 1.8; range, 2-10) with 95% presenting clinically relevant distress levels. Most frequent problems were sadness (91%), sorrows (90%), anxiety (78%), exhaustion (77%) and sleep disturbances (73%). Prevalence rates of moderate to severe anxiety and depressive symptoms were 47 and 39%, respectively. Only 25% of FCs had used at least one source of support previously. In multivariate regression analysis, being female (OR 2.525), spouse/partner (OR 2.714), exhaustion (OR 10.267), and worse palliative care outcome ratings (OR 1.084) increased the likelihood for moderate to severe anxiety symptom levels. Being female (OR 3.302), low socio-economic status (OR 6.772), prior patient care other than home-based care (OR 0.399), exhaustion (OR 3.068), sleep disturbances (OR 4.183), and worse palliative care outcome ratings (OR 1.100) were associated with moderate to severe depressive symptom levels. CONCLUSIONS: FCs of patients presenting with indication for specialist palliative care suffer from high distress and relevant depressive and anxiety symptoms, indicating the high need of psychological support not only for patients, but also their FCs. Several socio-demographic and care-related risk-factors influence mental burden of FCs and should be in professional caregivers' focus in daily clinical practice.

Palliative Care Patients' Quality of Dying and Circumstances of Death-Comparison of Informal Caregivers' and Health-Care Professionals' Estimates.

BACKGROUND: Patient-reported outcomes are usually considered to be the gold standard assessment. However, for the assessment of quality of dying and death, ratings of informal caregivers (ICGs) or health-care professionals (HCPs) must be considered for ethical and methodological reasons. This article aims to present results of ICGs' and HCPs' estimates of the questionnaire, quality of dying and death (QoDD) on patients who died in PCUs and to compare the level of agreement of both ratings/raters. METHODS: The parent validation study to this analysis assessed the ICG and HCP versions of the QoDD. Descriptive statistics are presented for each item in both versions. T tests for the estimation of differences between ICG and HCP were performed. Case-related absolute differences between estimates were analyzed regarding the extent of agreement and deviation. RESULTS: Two hundred fifteen matched ICG and HCP ratings were analyzed. The ratings in all 6 QoDD dimensions were high; single items scored low. Mean absolute difference between both ratings was 0.33 (standard deviation [SD]: 3.08; median 0.05) on a 0 to 10 numerical rating scale and ranges between -8.24 (higher rating of ICGs compared to HCPs) and 9.33 (higher rating of HCPs compared to ICGs). CONCLUSIONS: The findings appear to show a high satisfaction with quality of dying and death as rated by ICGs and HCPs, but we suspect this might be indicative of a methodological challenge, that is, a ceiling effect in both assessments. Single low scoring items may provide important clues for improvement in end-of-life care. Although descriptive data show comparable mean values and standard deviations, the actual congruence of ratings is low. In summary, replacing one rating by another cannot be recommended.