Well-being and Perceptions of Supportive Resources among Caregivers of Patients with Bladder Cancer

INTRODUCTION

Cancer impacts not only patients with cancer but also their caregivers who may represent spouses, relatives, or friends. Caregivers play important roles in providing care and support during cancer survivorship [1]. The number of cancer survivors is estimated to increase from 16.9 million in 2019 to 22.1 million by 2030 in the United States (US) [2, 3]. Caregivers of cancer patients thus have an expanding role in improving healthcare delivery and outcomes, particularly as growing numbers of patients with cancer are discharged from the hospital earlier and survive longer as diagnostic and treatment options improve [4]. Related to their expanded role in healthcare delivery, caregivers experience physical, social, emotional, and financial burdens [5, 6]. In addition, caregivers of cancer patients experience higher levels of burden and distress than non-cancer caregivers due to the unpredictability and often life-threatening nature of cancer and its treatment [7]. The caregiving experience and burden of caring for patients with cancer can decrease caregivers’ quality of life (QOL), which in turn negatively impact the cancer patients’ health outcomes [8, 9]. Thus, caregivers of patients with cancer require support as they provide care and assistance in the management of cancer.

Patients with bladder cancer and their caregivers face a unique burden from treatment-related symptoms and stress. For this reason, the challenges they face are of particular interest. Bladder cancer is the sixth most common cancer in the US [3]. Approximately 75% of patients are diagnosed with non-muscle-invasive bladder cancer and are managed with frequent surveillance cystoscopy, transurethral resection of bladder tumors, and intravesical treatment due to the high rates of recurrence and progression [10]. The remaining 25% have muscle-invasive bladder cancer and are often treated with cystectomy and urinary diversion or combined-modality therapy with intensive surveillance [11]. These complex treatments can lead to common symptoms and treatment-related complications, such as significant lower urinary tract symptoms, frequent urinary tract infections, hematuria, and dehydration [10, 12], as well as significant psychosocial issues such as uncertainty and distress [13]. In addition, bladder cancer, with a median age of 75 years, is prevalent among the elderly population [3] who often experience physical, functional, and cognitive declines and comorbid conditions that require frequent and intense caregiving. Providing care and support for an elderly cancer population with complex treatment-related symptoms and complications, as well as comorbid conditions, can contribute to an increased caregiver burden, which warrants the need for helpful cancer-specific caregiver resources and support.

Despite the treatment complications and related psychosocial challenges and their potential impacts on bladder cancer caregivers, little is known about caregiver well-being associated with bladder cancer and caregivers’ perceptions of supportive care resources. We conducted a national survey to understand the well-being and supportive care needs of caregivers of patients with bladder cancer. The survey was conducted in partnership with the Bladder Cancer Advocacy Network (BCAN), a national organization supporting bladder cancer patients and their caregivers. Our objectives of the study were to 1) describe well-being of bladder cancer caregivers and how they perceive the helpfulness of potential resources; and 2) identify the clinical and demographic factors influencing these outcomes.

MATERIALS AND METHODS

RESULTS

Caregiver well-being and perceived helpfulness of the potential resources

More than half of the caregivers reported that physical well-being (69.7%) and tiredness (53.0%) were “not a problem” or a “minor problem” (Fig. 1A). However, more than two-thirds of caregivers reported that fear (66.6%), worry (77.8%), and sadness (66.3%) were a “moderate” to “serious problem” for them.

The top four potentially helpful resources identified by the majority of caregivers included web-based information about bladder cancer and treatment options (79.0%), personal stories from other bladder cancer caregivers (62.0%), one-on-one specialized support (59.5%), and print-based information about bladder cancer and treatment options (56.6%) (Fig. 1B). Phone calling and online chatting with another bladder cancer caregiver were reported as ‘very helpful’ by the fewest caregivers. Nevertheless, approximately half (49.9% and 43.4%) of caregivers reported that an online chat or phone call with another bladder cancer caregiver respectively would be very helpful.

Fig. 1

(A) Caregiver well-being, (B) Perceived helpfulness of the potential resources. For both figures n = 559.

DISCUSSION

We investigated the well-being of caregivers of patients with bladder cancer and their perception of the usefulness of different supportive resources. The caregiver experience was marked by decreased emotional and physical well-being. Cancer stage and caregiver characteristics such as gender, education, and age were associated with caregiver well-being. Also, web-based materials and personal stories were perceived to be very helpful by the highest number of caregivers. Although caregivers’ perceived helpfulness of personal stories was associated with gender and cancer stage, their perceived helpfulness of web-based information was not associated with any of the demographic and patient cancer-related factors we examined.

In this study, more than two-thirds of caregivers reported fear, worry, and sadness as moderate to serious problems compared with 30– 47% reporting physical well-being and tiredness. Caregivers in other malignancies such as pancreatic cancer follow a similar pattern of QOL decrease in all domains, but most pronounced for emotional/psychological QOL [18]. In addition, we found that caregivers who are of younger age, female, with an advanced degree, and caring for a patient with advanced stage of cancer were more likely to experience decreased emotional well-being. Similar to findings of prior studies among patients with various malignancies and their caregivers [19, 20], older caregivers in this study reported less fear than their younger counterparts, which may be related to decreased fear of death with increased age as demonstrated in other studies [21]. Compared with male caregivers, female caregivers reported higher levels of fear, worry, and sadness in our study, which has also been demonstrated in a prior study regarding depression in cancer caregivers [22]. In addition, patients having advanced cancer stage increased the odds of caregivers reporting more serious problems with fear, worry, and sadness in our study. Our findings are consistent with the association between caregivers’ emotional well-being and impairment of patients with advanced cancer reported in a study of 364 caregivers of breast, digestive, and lung cancer patients [23]. Interestingly, among patients with advanced cancer, the patient’s own physical and emotional health may influence the emotional well-being of their caregivers. Prior studies showed that patients’ anxiety, depression, and emotional distress, which occur frequently as cancer progresses, were likewise associated with caregivers’ anxiety, depression, and emotional distress [9, 24]. Unfortunately, given the study design, we could not assess the interplay between patient and caregiver well-being, but future research should investigate this important relationship.

Our study also identified the resources that caregivers perceived to be helpful in managing the emotional and physical burden of caregiving. According to a survey of 196 caregivers of renal cell carcinoma patients, unmet information needs are associated with elevated anxiety and depression [25]. Improving helpfulness of resources for caregivers can fulfill unmet needs and improve their well-being. We found that caregivers perceived information about bladder cancer and treatment options as well as connections to other bladder cancer caregivers as helpful resources. Given that the average age of caregivers in our study was 61 years, one might question the relationship between older age and limited use of technology [26]. However, 79% of the caregivers reported web-based information about bladder cancer and treatments as very helpful. Although this may be due to selection bias related to use of the online platform for our survey, a prior study also corroborated the utility of Internet-based resources among caregivers, demonstrating that 93% of younger cancer caregivers and 76% of caregivers over the age of 65 were willing to access Internet-based tools [27]. We found that, similar to these results, web-based information was perceived to be very helpful by the respondents of all age groups although such perception was most common among those younger than 60 years. These findings suggest that older age does not preclude the use of internet/web-based programs for supportive oncologic care.

We also found that specialized support was perceived to be more helpful for caregivers taking care of patients with advanced disease. The association between specialized support and advanced cancer was not surprising, as the complexity of treatments and care can increase for invasive or metastatic disease compared with non-invasive cancer. For example, advanced cancer patients may see a nutritionist after bowel resection for an ileal conduit or neobladder, for poor appetite during surgery recovery, or for failure to thrive due to metastatic disease. Patients with an ileal conduit also benefit from visits with ostomy nurses to manage skin and appliance issues. Caregivers of patients with a neobladder may especially be more likely to find specialized support helpful, perhaps because of the upfront need to train the neobladder (e.g., necessary maintenance using irrigation) and the education needed to perform clean intermittent catheterization. Accessing specialized support may increase caregivers’ capacity in managing cancer-related issues, and thus help reduce caregiver burden and improve caregiver well-being. Prior research has demonstrated that when caregivers receive education to increase their self-efficacy and mastery of caregiving tasks, they experience better well-being [28]. In contrast, caregivers for those with earlier stages of bladder cancer did not perceive as much benefit to specialized support services, which may be due to the lower maintenance and less specialized knowledge required to care at home for a patient undergoing treatments such as surveillance cystoscopy or maintenance BCG.

Despite being the first study to investigate caregivers’ well-being and their perception of the useful-ness of supportive resources in bladder cancer care, our study has several limitations. First, we did not use a validated instrument but rather a stakeholder-modified questionnaire with questions that were derived from existing questionnaires. Patient and caregiver advocates involved in the study design felt that existing validated questionnaires did not capture the important and relevant information about their well-being, but wished to limit the number of questions to reduce survey burden. An additional limitation of our study is its cross-sectional design, which does not capture the impact of bladder cancer and its treatment on caregiver physical and psychological health over time. For example, while 69.7% of caregivers in our study did not report significant problems in physical well-being, one longitudinal study has shown that cancer caregiving is related to objective physical impairments such as increased rates of arthritis, back pain, and heart disease [29]. Third, our cohort may not be representative of the general population of caregivers for bladder cancer patients, given the great proportion of white, female caregivers with college or higher education. However, it should be noted that the majority of bladder cancer patients are white and male [3], and thus the expected demographics for spousal caregivers would be more likely white and female. Finally, the caregiver well-being and supportive care needs assessment reported in this study may not be generalizable to those who are not familiar with the online network and/or electronic survey given the online recruitment through the BCAN PSN. Patients and their caregivers with lower socioeconomic status, lower health literacy, or predominantly non-English speaking are underrepresented in our study. However, these people might be some of the most vulnerable and isolated populations and might not be familiar with the BCAN PSN.

Future studies should investigate patient- and caregiver-level determinants of emotional and physical burden longitudinally by examining patient and caregiver outcomes concurrently. Also, understanding the interplay between patient-level psychologic/physical health and caregiver well-being may shed light on how to improve QOL for both patients with bladder cancer and their caregivers. Additional gaps in evidence include the need to optimize supportive care resources for caregivers of patients with cancer. A systematic review of 19 articles on psychosocial interventions for cancer caregivers reported that a lack of detailed intervention descriptions limited conclusions on how resources affect caregiver QOL [30]. Thus, a randomized trial evaluating clearly defined interventions, such as providing bladder cancer caregivers with specific web-based materials, would be an important next step toward improving their well-being. In addition, future studies should be conducted in minority and underrepresented populations, including caregivers with lower SES, lower health literacy, and non-English speaking.

CONCLUSION

We identified characteristics of caregivers who have decreased well-being, including younger age, female gender, having college or higher education, and caring for a patient with advanced cancer. We also identified the resources that caregivers perceived as helpful. In particular, web-based information about bladder cancer and treatment options can be offered to caregivers, including older adults. Caregiver networks through BCAN and other online forums are also beneficial support for caregivers of patients with bladder cancer, particularly those with advanced disease.

FUNDING

This project was supported in part by a Patient-Centered Outcomes Research Institute (PCORI) Engagement Award (PI: Smith).

AUTHOR CONTRIBUTIONS

AJ: Conception, interpretation and analysis of data, writing the article; LS: Conception, interpretation of data, writing the article; ES: Conception, interpretation of data, writing the article; RL: Conception, performance of work, writing the article; KS: Conception, performance of work, writing the article; SC: Conception, performance of work, writing the article; JG: Conception, performance of work, writing the article; AS: Conception, performance of work, interpretation of data, writing the article.

ETHICAL CONSIDERATION

The data collected were de-identified, and thus, the Institutional Review Board (IRB) at the University of North Carolina at Chapel Hill has determined that the study does not require IRB approval.

CONFLICT OF INTEREST

Dr. Smith reports grants from PCORI, during the conduct of the study; grants from PCORI, other from Merck, other from Photocure, other from Fergene, other from Urogen, grants from BCAN, outside the submitted work. Dr. Gore reports grants from FerGene, Inc., outside the submitted work. Ms. Louwers reports personal fees from BladderCancer.net, outside the submitted work. The other authors declare that they have no conflict of interest.