Systematic review of caregiver burden, unmet needs and quality-of-life among informal caregivers of patients with pancreatic cancer

Pancreatic cancer is a disease with high morbidity and a high mortality rate. The overall survival at 5-years is 6–10%, due in large part to late diagnosis which precludes curative resections [1, 2]. At diagnosis, only 10–15% of patients have localised disease and are potential candidates for curative resection [2, 3]. Even for patients who received resection, the overall 5-year survival rate is less than 25% because of early recurrence [1, 2]. Hence, the focus of treatment in the majority of the patients has been about achieving a balance between palliative chemotherapy and maintaining quality-of-life [4].

Informal caregivers — spouses/partners, other family member and/or close friends — serve an increasingly important role in the modern health system by supporting patients’ needs inside and outside the healthcare setting. In the context of cancer, informal caregivers may provide support during treatment, manage the patient’s medications, coordinate healthcare visits, and update friends and family, in addition to supporting patients with activities of daily living (e.g. feeding, bathing, and dressing patients) and instrumental activities of daily living (e.g. managing finance, cooking, and cleaning) [5, 6]. With a trend towards shorter hospital stays, the role of informal caregivers’ has expanded to include the monitoring and management of patients’ medication and symptoms [7]. Cancer caregivers are estimated to spend an average of 32.9 h a week providing care and with 72% of that duration spent on performing complex medical or nursing tasks [8].

The adverse effects of informal caregiving are increasingly appreciated in various diseases including cancer [9, 10]. In cancer, family members and friends are seldom prepared to be caregivers [11] and are thrust into the role at the time when they are coming to terms with the diagnosis. Disruptions to caregivers’ lives can be significant, and many suffer from a wide range of problems [12‐14]. These effects can impact caregiver quality-of-life [15].

High-quality cancer care is now recognised as not limited to the delivery of appropriate treatment but also includes ensuring patients’ supportive care needs are met [16]. The scope of supportive care encompasses helping the patient and their family cope with cancer and its treatment across the illness trajectory and with death and bereavement [16]. The nature of the caregiver burden imposed by diseases varies according to the disease and its physical manifestations. The survival rate in pancreatic cancer is markedly lower than for other common cancers [17], and there has been little improvement over the past 30 years [18]. Most patients are diagnosed at an advanced stage, when curative treatment is impossible [19]. Patients tend to deteriorate rapidly and up to 90% have died within a year of diagnosis, demonstrating the aggressiveness of the condition [17]. All treatments and are associated with a significant side-effect burden, and patients’ quality-of-life and psychological wellbeing are notably worse compared to people without cancer and those with other forms of cancer [17]. It is therefore plausible that the impact of pancreatic cancer on informal caregivers is potentially distinct [18].

To inform the need for services and supports for informal caregivers of pancreatic cancer patients, it would be valuable to review the literature on the experiences of caregiving. This review aims to systematically identify and assess burden, unmet needs, and quality-of-life of informal caregivers of patients diagnosed with pancreatic cancer.

The present systematic review, the first on caregivers of pancreatic cancer, has identified only nine studies, which reported qualitative or quantitative data on burden, unmet needs or quality-of-life, among informal caregivers to patients with pancreatic cancer. It identified the management of symptoms as a significant subjective burden among informal caregivers. It further identified three key unmet needs: the need for better clinical communication, the need of support and briefings for informal caregivers and the need for help with navigating health systems. It also found a high prevalence of depression and anxiety among informal caregivers.

Cancer patients tend to experience severe symptoms more frequently and to have a sharper decline in quality-of-life when compared to other chronic diseases [29]; this is particularly true in pancreatic cancer [2]. Healthcare policies and reforms in many countries now prioritize patients taking a more active role in (self-)managing their illness [29]; to effectively self-manage, patients need support, and that support often comes from a family member or friends [29]. Furthermore, health institutes’ policies also increasingly push for shorter length of hospital stay and more outpatient care thus placing greater responsibility on partners and families to supplement care received from professionals [29]. This evolution in the delivery of health care has led to the unintended sequelae of distress amongst caregiver when required to perform these caregiving tasks. It has been estimated that informal caregivers of cancer patients spend an estimated of 32.9 h a week on caregiving tasks, of which 72% involves performing complex medical or nursing tasks [35]. In the context of pancreatic cancer, the transition into caregiver role occurs very suddenly, and informal caregivers find themselves required to learn new medical information, coordinate appointment, manage medications, diet and nutrition, search for clinical trials and alternative treatments and prepare for medical emergencies within a short time span [28]. Given these trends and the aggressiveness of the disease course in pancreatic cancer in particular, modern health systems must allocate adequate resources to intervene and equip caregivers with basic medical or nursing competencies to cope with their caregiving task [36].

In our review, data on quality-of-life of informal caregivers was limited to their psychological wellbeing. The review showed large proportion of informal caregivers with clinical levels of anxiety (33%) and depression (12–32%). This level of psychological distress was similar to other studies on cancer caregivers [37]. Due to the lack of longitudinal studies, this review is not able to answer how pancreatic cancer caregivers’ quality-of-life changes across the trajectory of the illness; future studies on this would be of value. Predictors of psychological morbidity among informal caregivers were limited to sociodemographic and clinical characteristics including caregivers’ chronic morbidity, education status, bereavement, and history of access to professional psychological help [6, 32]. One study of patient-caregiver dyads showed correlations between anxiety and depression levels between patient and caregivers [32]. This suggests the possibility that interventions which support caregiver quality-of-life or psychological wellbeing may also yield benefits for patients (or vice versa).

Studies on cancer and non-cancer caregivers showed perceived burden as an important predictor of psychological morbidity [37, 38]. Different caregiving tasks, which constitute caregiver burden, impact caregiver distress to different extents. In one study on head and neck cancer, informal caregivers felt greater distress when assisting with caregiving tasks related to cancer-specific care (e.g. helping with medications) than those related to general supportive care (e.g. coordinating appointments) [39]. Feeling uncomfortable with cancer-specific care was predictive of informal caregivers’ anxiety and depression [39]. In this review, distress caused by managing pancreatic cancer symptoms featured prominently in the informal caregivers’ experiences. Future studies are needed to confirm the link between subjective burden of performing cancer-specific care and overall caregiver burden and their psychological quality-of-life in pancreatic cancer. Evidence that substantiates the proposed link would further justify the need to equip informal caregivers with necessary competencies to assist with cancer-specific care, in addition to providing psychological support to informal caregivers in need of such support.

Informal caregivers’ unmet needs identified in this review were the need for better clinical communication, need of support and briefings for caregivers and need for help with navigating the health system. Informal caregivers’ discontentment with clinical communication was largely directed at the delivery of diagnosis which they felt lacked empathy. In parallel with this, a survey of pancreatic cancer patients’ experience with delivery of news found two-third of patients felt their diagnosis was not given sensitively [40]. Ineffective patient-clinician communication, exemplified by contradictory, excess or inadequate information, was raised by a smaller subset of informal caregivers. This finding again echoes findings from the same patient survey wherein one-third of patients felt staff did not talk to them about their care and treatment in a way that they could understand [40]. Deficiencies in patient-clinician communication around cancer is an area that needs improvement; this is arguably especially important in a disease with such a poor prognosis, where the patient may decline very rapidly. Though tools such as guidelines and protocols have limitations, they can be useful adjuncts in supporting clinicians in navigating complexities of patient-clinical interactions when discussing cancer-related issues [41].

The second unmet need was the need for support and briefings from health care professionals. This again is related to communication with health professionals. As the focus of the health care system is to treat and care for the patient, informal caregivers felt neglected by the process of care delivery. This neglect has been studied by many researchers [42‐44]. Despite the importance of informal caregiver to the modern health system, they report being seldom acknowledged, that health professional rarely show interest in them (and their health and ability to cope) and that health professionals spend insufficient time informing them about specific aspects of a disease such as symptoms and side effects [45]. Suboptimal interaction with informal caregivers may lead to caregiver distress and less competency in dealing with uncertainty and problem solving [42], thus potentially adversely impacting on the patient. This provides a rationale for seeking to find ways to better meet caregivers’ needs in this regard.

The final unmet need among pancreatic cancer informal caregivers is related to the need for help in navigating the health system. Cancer care delivery is complex, and patients may encounter multiple specialties including surgery, oncology, palliative, and occasionally emergency services across his/her disease course. Patient navigation programs could be one route to better meet caregiver (and patient) needs and improve access to the services [46].

Comparing our findings with those from past reviews suggests that there are some broad similarities between caregiving in pancreatic cancer and other cancers [14, 47]. For example, in a systematic review focused on caregiving in solid tumour patients, the management of symptoms also emerged as the foremost reported factor affecting burden [47]. In the review of Wang et al., on unmet needs in advanced cancer, the authors noted that several studies reported that caregivers had unmet needs in relation to illness and treatment information, which has some parallels with our findings, although ours are more specific [14]. Beyond this, direct comparisons between pancreatic cancer and other malignancies are difficult owing to the limited evidence base on caregiving in pancreatic cancer and differences in study methodologies.

Limitations of the review relate both to the review process and the nature of available evidence. We did not register the review protocol a priori with PROSPERO or another external database. A single author undertook the initial screening process of title and abstract. A ‘single screening’ approach is cost-effective and reduces workload [48], but risks missing studies which can impact the findings of the review [49]. Restricting inclusion to English-language studies also risked missing important evidence. Considering limitations in the evidence-base itself, quantitative data on caregiver burden and unmet needs is lacking and that on quality-of-life only covers a single dimension: psychological wellbeing. It is likely that caregivers’ role(s) across different phases of the illness trajectory evolve(s) with the changing tangible and intangible demands imposed on them. Prospective studies that track changes to caregivers’ experience (burden, needs and quality-of-life) across the trajectory of illness of pancreatic cancer are currently lacking. In addition, most data pertain to caregivers supporting patients with advanced or metastatic disease. Lastly, patient or caregiver characteristics, or other factors, that might be associated with greater burden, more needs and worse quality-of-life, and the interrelationships between different aspects of caregivers’ experience (burden, needs and quality-of-life) have largely not been examined. These limitations argue for studies with longitudinal design which use multi-method (i.e., qualitative and quantitative) approaches to characterise and understand multidimensional aspects (burden, needs and quality-of-life) of informal caregivers’ experience in pancreatic cancer across the illness trajectory. Such studies could also shed light on which caregivers are at greatest risk of poor experiences and the interrelationships between different aspects of caregiver experience.

Informal caregivers of pancreatic cancer patients were burdened by management of patients’ symptoms. The unmet needs encountered were for better clinical communication, support and briefings for informal caregivers and help with navigating health systems. A large proportion of the informal caregivers experience anxiety and depression. Future longitudinal studies employing multi-method approaches are needed to better characterise and understand informal caregivers’ experiences.