Burden of spousal caregivers of stage II and III esophageal cancer survivors 3 years after treatment with curative intent

This study is the first to provide data on the burden of spousal caregivers caring for patients with resectable esophageal cancer, on average 3 years after patients’ surgery.

We demonstrated that one third of the spousal caregivers experienced moderate or high burden (moderate 15 %, high 19 %). This proportion was comparable to caregivers of patients with colorectal cancer [40], but higher than caregivers of patients who had head and neck cancer and were treated with radiation/chemoradiation [41]. It is important to realize that we investigated a selection of all patients with esophageal cancer, namely the patients that were treated with curative intent and are still alive 3 years after their treatment. Most research has focused on caregivers providing care during active treatment or at the patient’s end of life. However, informal care giving continues with the completion of the patient’s active treatment [13]. Given the median time of 38 months after esophagectomy, the burden of spousal caregivers in the context of accelerated hospital discharge and critical participation in care service was not under investigation in this study.

Fatigue of the patient was a significant factor associated with caregiver burden, with an almost 70 % increase in risk of caregiver burden, while age, employment, education level, quality of marital relationship, and unmet needs had no impact on caregiver burden. Next to fatigue of the patient, depression of the caregiver increased the risk of burden with almost 40 %.

Cancer survivors have extensively described fatigue as a distressing symptom in general [42, 43]. It occurs in at least 30 to 40 % of the cancer survivors. In a recent meta-analysis in patients after esophagectomy, it was shown that fatigue lasted for more than 12 months after surgery [44]. Publications concerning interventions on fatigue are numerous. Pharmacologic and nonpharmacologic interventions have been shown to be effective for relieving or managing fatigue [45]. A study conducted in 98 disease-free cancer patients with severe fatigue showed that postcancer fatigue can be treated effectively with cognitive behavioral therapy [46]. The current study demonstrated that treating fatigue may not only alleviate patients’ distress but may also decrease caregivers’ burden. The reasons for the strong relation between fatigue and caregiver burden should be addressed in future qualitative research. Possibly, patients’ fatigue limits their capacity to perform self-care or household activities and their ability to join leisure activities, which increases caregiver’s burden. Supporting spousal caregivers should involve helping them manage the fatigue of their partner.

Patients’ quality of life in general was very good as indicated by the mean general health score of 83 and median scores of the functional scales of at least 87. Even on the symptom scales measured by EORTC QLQ-C30 50 % of the patients showed no complaints. However, when using the esophageal specific site module symptom scores, indeed showed the presence of symptoms. These findings correspond with the recently reported deterioration in aspects of quality of life several months after esophageal cancer surgery [44].

Our results showed that caregiver’s depression was associated with the presence of moderate and high burden. Our estimates of depression in caregivers and patients are lower than those in some previous reports. This is probably caused by the fact that our study was performed a relatively long time since resection (mean 38 months). A recently published review on depression and anxiety in cancer survivors and their spouses illustrates the heterogeneity of the results regarding the prevalence of derpression [47]. In the pooled sample of 1,285 caregivers a prevalence of depression of 26.3 % with a 95 % CI of 18.4–35.0 was reported. Of note, not all studies used the HADS questionnaire for measuring symptoms of depression. Length of time since diagnosis was 4.35 years (standard deviation 1.67). Despite the relatively low rate of depression symptoms in our sample, it turned out to be a correlate of caregiver burden. Our study does not allow for conclusions about the cause of caregiver’s depression, and it cannot rule out the possibility that it is caregiver burden that causes depression, rather than vice versa. It does show, however, that spousal caregivers with depressive symptoms are likely to coexperience caregiver burden, which might direct caregiver support. Indisputable, the treatment of esophageal cancer has been improved during the previous 10 years. Nevertheless, the recurrence rate remains 35 % with the dismal median prognosis of 49.4 months [48]. Therefore, the cancer coming back is not unrealistic and explicit handling of this topic during consultation may support patients and caregivers. Despite the significant psychological impact of caring, caregivers might not seek required treatment, as Vanderwerker et al. [49] reported that almost half of cancer caregivers who met diagnostic criteria for a psychiatric condition did not seek treatment.

In our study, spousal caregivers reported significantly more martial dissatisfaction than patients. This corresponds to previous reports. Langer et al. [50, 51] found that caregivers reported lower levels of marital satisfaction 1.5 years after stem cell transplant. In their data, with a balanced gender distribution, the predictor for martial dissatisfaction was female gender of the caregiver. The spousal caregivers in our study are predominantly female (70 %) which may have added to the significantly high dissatisfaction.

We showed that managing concerns about the cancer coming back (43.4 %), dealing with others not acknowledging the impact on your life of caring for a person with cancer (37.2 %), and balancing the needs of the person with cancer and your own needs were the top ranking unmet needs. This concurs well with previous report [52‐54].

The first unmet need is in line with the high recurrence rate of esophageal cancer after treatment with curative intent. The frequency of this unmet need published in literature varies [54, 55] and as concluded by Harrison et al. [56] in their review, the absence of standard methods of analysis and reporting unmet needs prohibits analysis of unmet needs.

Some limitations of our study need to be acknowledged. First, this is a Dutch cohort from a tertiary center and therefore may not be representative for patients and spousal caregivers in other countries and other hospitals. Second, selection bias might have occurred. Although the response rate was relatively high (67 %), the sample of respondents can be a selection of spousal caregivers with a relatively low caregiver burden. Spousal caregivers encountering high burden might not want to participate in this trial. No nonresponder/refuser analysis was conducted. Third, due to its cross sectional design, causal relations cannot be inferred. Fatigue of the patient and depression of the spousal caregiver can influence caregiver burden, caregiver burden can also influence fatigue of the patient and depression of the caregiver. Fourth, the small sample size limits generalizability. A larger sample size would have allowed for a more extensive multivariate analysis [39]. Fifth, the SPPIC is a validated instrument, but standard data have not been established. The cutoff used for dichotomization of the SPPIC is not validated. However, as the presence of caregiver burden (yes/no) is useful information in the consultation room, we dichotomized the SPPIC. We used a low cutoff value in order to detect moderate and high burden. Since even moderate burden 3 years after treatment could be considered worrisome, we decided to split low from moderate-high burden.

Sixth, multicollinearity between covariates was assessed for the selected variables included in the multivariate analysis. Because of limited statistical power, extensive model checking was not possible. As clinically relevant correlations were not found, multicollinearity appeared not of major relevance. Seventh, as noninteraction of the correlates (caregiver’s depression and patient’s fatigue) is a prerequisite for reasonable interpretation of odds ratios in logistic regression, we performed multivariable regression analysis including an interaction term, which was not statistically significant associated with the outcome; however, it cannot be fully ruled out. And last, in our data, in which each patient is linked to a spousal caregiver, nonindependence cannot be assumed. Mutual influence within a patient and his/her spousal caregiver is present and possibly relevant in interpreting our results. Consequently, interferential test statistics may be too liberal or too conservative.

Despite these restrictions, our findings have useful clinical implications and provide a base for future research. Regression analysis identified a group of spousal caregivers at risk for experiencing higher burden. Our finding that patient’s fatigue and caregiver’s depression are associated with higher caregiver burden points to risk factors that are of direct use in the consultation room. The current practiced routine in the Netherlands unfortunately lacks structural attention for the spousal caregiver. Patients periodically have follow-up visits with health care providers who are focused primarily upon the physical needs of the patient. An incentive has recently been undertaken in the Netherlands to measure burden during the cancer treatment (Ontmoet je Partner in Zorg [Dutch; meet your partner in care] [57]). Utilizing psychological interventions such as psycho-education, counseling, or skills training have been shown to decrease symptoms of distress [8]. Unfortunately, these interventions are rarely implemented [8].

In conclusion, this is the first study reporting on caregiver burden in spousal caregivers of patients with esophageal cancer treated with curative intent. Our data show that more than a third of spousal caregivers of patients with esophageal cancer report moderate or high burden. Depression of the caregiver and fatigue of the patient are associated with caregiver burden. Further research should be undertaken to raise awareness and design interventions to reduce caregiver burden in esophageal cancer.