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

Regarding patients and their family caregivers (FC) as a “unit of care” is a basic principle of palliative care to improve the quality of life not only of the ill persons, but also of their families and friends [1]. FCs are important reference persons for the patients and have relevant impact on their wellbeing and quality of life, but at the same time, they are also affected by the patients' diseases with own burden and needs. Studies demonstrate various mental, social, physical, and economic burden in FCs [2, 3]. Psychosocial burden of FCs increases with the patients’ disease progression and, nearing death, it can even exceed the patients’ burden [4].

In previous studies, moderate or severe distress has been described in 55–90% of FCs assessed at different time points during the patients’ incurable cancer diseases [5‐8]. Data on impact of sociodemographic characteristics, e.g. gender differences, are heterogeneous [5, 9], but psychosocial factors seem to be relevant including FCs’ self-care, role, stress, exhaustion, and overload [6, 10]. Further, mutual interactions between distress of patients and their families have been observed [9, 11].

Anxiety seems to be the most prevalent symptom in FCs, but the reported prevalence rates of significant anxiety vary largely between 32 and 72% [3, 5, 8, 12‐15]. Prevalence rates for significant depression are lower in most previous studies, but also vary between 16 and 69% [3, 5, 8, 12‐15]. Rumpold et al. described a decrease of anxiety prevalence over time from primary diagnosis of incurable cancer, whereas depressive symptoms remained stable [12]. FCs seem to be more likely to report anxiety symptoms, while depressive symptoms seem more frequent in patients [16, 17]. Dyads’ anxiety and depressive symptoms are positively associated [17]. FCs’ perceived hope, burden, resilience, coping strategies, self-care practices, nighttime sleep, physical activity, and pre-loss grief were associated with their mental burden, specifically with depressive symptoms [3, 12, 15, 18‐20]. In addition, the patient’s coping strategy and acceptance of prognosis are also of impact on FCs’ depressive symptoms [17, 18]. While the FCs’ relationship to the patients influences FCs’ depressive symptoms [15], data on gender differences are controversial [5, 13].

Overall, previous studies evaluating mental burden of FCs and associated factors are inconsistent due to heterogeneous measures, evaluation of FCs of patients with different diseases, different assessment time points, and care settings.

Therefore, the aims of our study were to systematically evaluate distress, depressive and anxiety symptoms in the defined cohort of FCs of advanced cancer patients at the beginning of specialist inpatient palliative care (SIPC) on a palliative care ward. In addition, potential factors associated with mental burden including sociodemographic as well as disease- or care-related factors, prior utilization of psychosocial care, the FCs’ satisfaction with palliative care and perceived palliative care outcome were evaluated.

This study evaluated mental burden, including distress, depressive and anxiety symptoms in FCs of patients with advanced cancer at initiation of SIPC, thus also representing the FCs’ situation prior to first contact with the SIPC ward. Our data on the prior care setting suggests that for the majority of 86% patients it was the first contact with any kind of specialist palliative care.

Clinically relevant distress was observed in almost all FCs (95%) in this study. Previous studies have reported moderate or severe distress varying from 55 to 90% of FCs at different time points during the patients’ incurable cancer diseases, measured with different assessment instruments [5‐8]. Areia et al. reported almost identical rates of severe psychological distress assessed by the Brief Symptom Inventory among FCs of patients with terminal cancer [8], while Rosenberger et al. found similarity high rates (90%) of relevant distress (DT ≥ 5) in FCs of cancer patients across all cancer stages [5]. In FCs of patients with high-grade glioblastoma, distress (DT ≥5) was most prominent proximal to diagnosis with 62%, but remained high during 3 (61%) and 6 months follow-up (58%) [7]. Our assessment included a modified DT problem list, demonstrating that the five most distressing problems in FCs were sadness, sorrows, anxiety, exhaustion, and sleep disturbances.

Regarding socio-demographic and patient-related characteristics, FCs with “severe distress”, which we defined at a cut-off of DT ≥ 8, significantly more often cared for younger patients, while previous studies did not report patient age but FCs’ age as predictor of FCs’ burden [8]. Two studies have revealed the relationship to the patient as significant associated factors [8, 9], which could not be confirmed in our study. The role of FCs’ gender was heterogeneous in previous studies [5, 8, 9], but no such effect was observed in our analysis. Satisfaction with palliative care was higher in FCs with “severe distress”. Care satisfaction has not been evaluated as factor potentially associated with mental burden, but the satisfaction of needs by healthcare professionals [8], managing patients’ psychological symptoms [40, 41], and the construct “exhaustion and overload” [10] have previously been described as impact factors. We assume that high satisfaction with care on the SIPC ward might be influenced by FCs relief from caregiving problems and overload. Thus, palliative care on the SIPC ward might be overestimated by FCs’ in terms of downward-comparison to the care situation prior to initiation of SIPC. In contrast, ratings of palliative care outcome including more objective parameters of the patient’s situation was rather moderate or low in all subscales (Physical symptoms, Emotional symptoms, Communication/practical issues) without any association with FCs’ distress.

Moderate to severe anxiety and depressive symptoms were observed in 47 and 39% of FCs at admission to SIPC, respectively, and mean scores of symptom levels were significantly higher than those of an age- and gender-adjusted population sample [26, 28]. These results are in line with previous studies reporting prevalence rates of significant anxiety between 32 and 72% at different time points of the advanced cancer patients’ disease trajectories [3, 5, 8, 10, 12, 13, 15]. Prevalence rates of significant depression were also lower in most previous studies but also with large variations of 16–69% [3, 5, 8, 10, 12, 13, 15]. In our study, one possible explanation for lower rates of significant depression could be that FCs of patients, who qualified for referral to SIPC, have been encountered with numerous stressors within the last days, which specifically may give rise to anxiety than depression. Both questionnaires used to assess symptoms of anxiety and depression, the GAD-7 and PHQ-9, refer to FCs symptoms within the last 2 weeks.

Our analysis of correlates of moderate to severe depressive and anxiety symptoms revealed several socio-demographic factors to be associated with elevated mental burden. Female FCs had a higher risk for moderate to severe anxiety and depressive symptom levels, supporting the results of Grande et al. who reported similar findings [42]. While in the study of Grande et al. differences in mental burden were more pronounced in younger FCs [42], in our study older FC age was significantly associated with moderate to severe depressive levels in bivariate analyses, but this effects disappeared in multivariate analyses. Moderate to severe anxiety symptoms, but not depressive symptoms, were more frequent in spouses or partners compared to other kinds of relationship to the patient. In contrast, studies evaluating FCs of advanced cancer patients over all stages of disease showed significantly more symptoms of both, anxiety and depression, in spouses [12, 43] and Nielsen et al. reported highest levels of depressive symptoms in bereaved partners [15]. Lower monthly household net income was associated with moderate to severe anxiety symptoms, and in multivariate analyses, low socio-economic status showed to be an important risk factor for moderate to severe depressive symptoms. These findings demonstrate the high relevance of socio-economic aspects when seeking to address FCs mental burden.

Considering care-related aspects, in multivariate analyses, patient care in the home care setting prior SIPC was associated with less depressive symptoms. This might suggest that FCs’ feelings that the patient has been cared for at the place according to his or her wishes might be a protective factor. Sleep disturbances were more frequent in FCs with moderate to severe anxiety and depressive symptoms in our study. This has also been described by Peak et al. who found an association between short nighttime sleep and FCs’ anxiety and depressive symptoms [20]. Nevertheless, it remains unclear whether sleep disturbances cause anxiety and depressive symptoms or vice versa. Further, exhaustion was more prevalent in FCs with anxiety and depressive symptoms, but the association with anxiety symptoms disappeared in multivariate analysis. Several previous studies suggested associations between self-care practices and the FCs’ own physical capacities, which might relevantly contribute to FCs’ exhaustion, with prevalence of FCs’ psychological burden [12, 18, 20, 43]. However, FCs’ depressive – not anxiety – symptoms seem to be more strongly related to their resilience and overall burden [19, 20, 44]. Regarding FCs assessment of patient care and palliative care outcome, satisfaction with palliative care did not show any association with mental burden. However, worse perceptions of palliative care outcome, which includes FCs’ estimation of patient’s physical symptoms, emotional symptoms as well as communication/practical needs, was associated with moderate to severe depressive and anxiety symptoms. Oechsle et al. [13] demonstrated a higher risk of overestimation of patient’s symptom burden among FCs with higher levels of depressive and anxiety symptoms. In aggregate, these findings emphasize the importance of understanding the FCs perspective on the patient’s situation when addressing FCs mental burden.

We found no association between having utilized psychosocial support services prior SIPC and mental burden. But, interestingly, only one fourth of FCs in our study had used professional psychosocial support, and the most frequent reason for non-use was sufficient informal support. Previous studies also reported low rates of psychosocial service use in FCs of about 10–30% despite of partly high interest in support or high psychological symptom burden [43, 45, 46]. This raises the question whether FCs are able to estimate and appreciate their own psychosocial needs in this difficult situation or if they prefer informal support due to lacking support offers adapted to their specific situation. Some first interventional studies have evaluated different psychological interventions as stand-alone interventions or part of integrated SIPC [47‐53], but results were heterogeneous with positive effects only on parts of outcome parameters or without sustainability.

This study was the first prospectively evaluating mental burden in a large cohort of FCs of advanced inpatient cancer patients at the time of admission to SIPC at two university centers representing different regions. Internationally, most FC-directed palliative care research focuses on the setting of home-based care, but FCs’ burden in the SIPC setting has been less investigated, although circumstances qualifying the patient for SIPC might impact FC burden and specific support might be required. Further, only a limited body of palliative care research in German-speaking countries focuses on the FCs’ situation. However, the culture of caregiving and characteristics of health care systems may influence FCs’ mental burden.

Yet, it is notable that the results of our study are subject to certain limitations. Among those, generalization of results was most relevant. Due to our study design, results reflect the situation of FCs at initiation of specialist palliative care in an inpatient setting and might not be directly transferred to an outpatient palliative care setting. Referral of cancer patients to SIPC is often initiated late in the disease trajectory or close to death, often associated with high and complex symptom burden [54]. Thus, generalization should be applied with awareness for possible bias towards higher distress in FCs of patients admitted to SIPC. Though high psychological burden had not been defined as exclusion criterion a priori, 89 FCs refused study participation for this reason. This may affect generalization, as FCs included may be burdened to a lesser extent or may represent more extreme positive or negative experience, which may have motivated study participation. Further, data on FCs satisfaction with palliative care (FAMCARE-2) should not be taken as representative for the experiences of FCs during or at the end of SIPC, as data was obtained within 72 h after the patient had been admitted. It is a novelty that an adapted version of the staff proxy-report version of the Integrated Palliative Care Outcome Scale (IPOS) was used in this study. Although the IPOS was found to be a valid and reliable tool [33], psychometric properties including reliability may not apply to proxy-reports of FCs. Specific prerequisites of acting as FC, such as direct personal involvement and being a lay person in most cases, may influence the assessment, and data has to be interpreted with awareness of these limiting factors. Nevertheless, with exception of the IPOS, we used valid and reliable measures for the assessment of distress, anxiety and depressive symptoms as well as variables assumed to be associated with mental burden. Finally, we focused on FCs’ situation, thus not including potential effects of the patient’s psychological distress, coping strategies or prognostic understanding on FCs’ mental burden. Nevertheless, prior studies have underscored the importance of these risk factors for elevated burden among FCs [16, 17].

FCs of patients admitted to SIPC suffer from high psychological distress, and relevant anxiety and depressive symptoms. This demonstrates the high need of psychological support as central part of specialist inpatient palliative care not only for the patients, but also for their FCs. Several socio-demographic and care-related factors are significantly associated with FCs’ mental burden and should be in professional carers’ focus in daily clinical practice. FCs’ female gender, exhaustion and worse ratings of the patient’s palliative care outcome seem to be associated with both moderate to severe anxiety and depressive symptoms. Further supportive or psychosocial interventions - even at an earlier stage of the disease - should be developed and evaluated to better address FCs’ problems and psychosocial needs in future. Since studies underscore the co-occurrence and interdependence of FCs and patients mental burden, targeting FCs problems via such interventions might have the potential to also enhance patient’s quality of life and mental well-being. However, interrelationships of mental burden in dyads of patients and their FCs also raise the question, when individual versus dyadic interventions would be most beneficial. Therefore, future research on FCs mental burden and evaluation of interventions designed to address these burden should also include assessment of the patient’s psychological distress.