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

Abstract

Purpose Informal caregivers play an important supportive care role for patients with cancer. This may be especially true for pancreatic cancer which is often diagnosed late, has a poor prognosis and is associated with a significant symptom burden. We systematically reviewed the evidence on caregiver burden, unmet needs and quality-of-life of informal caregivers to patients with pancreatic cancer. Method PubMed, Medline, CINAHL and Embase databases were systematically searched on 31 August 2021. Qualitative and quantitative data on informal caregivers’ experiences were extracted and coded into themes of burden, unmet needs or quality-of-life with narrative synthesis of the data undertaken. Results Nine studies (five qualitative, four quantitative), including 6023 informal caregivers, were included in the review. We categorised data into three key themes: caregiver burden, unmet needs and quality-of-life. Data on caregiver burden was organised into a single subtheme relating to symptom management as a source of burden. Data on unmet needs was organised into three subthemes need for: better clinical communication; support and briefings for caregivers; and help with navigating the health care system. Data on quality-of-life indicate large proportions of informal caregivers experience clinical levels of anxiety (33%) or depression (12%-32%). All five qualitative studies were graded as good quality; three quantitative studies were poor quality, and one was fair quality. Conclusion High-quality pancreatic cancer care should consider the impacts of informal caregiving. Prospective longitudinal studies examining multiple dimensions of caregiver burden, needs, and quality-of-life would be valuable at informing supportive care cancer delivery to pancreatic cancer informal caregivers.

Closing the Caregiving Gap: Considerations for Pancreatic and Periampullary Cancer Caregivers

“…Investigators comprehensively used both quantitative and qualitative methods at 1 month postsurgical resection, a time with known impacts to patient quality of life. 9 In line with other cancer caregiving literature, 5 the sample comprised mostly White (84%), college-educated (55%), female (71%), spousal (59%) caregivers. These caregivers identified the time immediately postoperation/postdischarge as the most stressful period of their caregiving experience (47%).…”

“…5,7 While distress was lower in this sample, extant research suggests that caregivers' psychological distress may be even higher at different points of the disease trajectory, as an estimated 33% of caregivers reported clinical levels of anxiety, and up to 32% reported clinical levels of depression. 5 Some even reported symptoms that were greater than that of the patients they were caring for, 6,7 a pattern of distress that has been observed in caregivers of patients with gastrointestinal cancers 10 and primary brain tumors. [11][12][13] Despite caregivers' high need for psychological support, the results of Fong et al 8 mirror a general trend in cancer caregiving, which finds a significant gap between caregivers' need/interest in supportive care and their actual use of these services-likely because of the myriad systemic hurdles.…”

“…In fact, three recent systematic reviews collectively identified only 12 studies in the past 15 years that report on the experience of pancreatic cancer caregivers. [5][6][7] In the article that accompanies this editorial, a prospective, cross-sectional tri-institutional study by Fong et al 8 expands this evidence base by evaluating the sociodemographic characteristics, mental health symptoms, common responsibilities, and greatest challenges of caregivers of patients with pancreatic and periampullary cancers (N 5 240). Investigators comprehensively used both quantitative and qualitative methods at 1 month postsurgical resection, a time with known impacts to patient quality of life.…”

“…These caregivers have trouble managing the patients' gastrointestinal symptoms/ diet, navigating the health care system, communicating with providers, juggling multiple responsibilities, and maintaining their own well-being. 5,7 They report a range of emotions, including shock at the time of diagnosis, anger as they were suddenly forced into their role, guilt for the inability to manage symptoms, and feeling alone and invisible to the medical team. 5,7 While distress was lower in this sample, extant research suggests that caregivers' psychological distress may be even higher at different points of the disease trajectory, as an estimated 33% of caregivers reported clinical levels of anxiety, and up to 32% reported clinical levels of depression.…”

Palliative care and new technologies. The use of smart sensor technologies and its impact on the Total Care principle

“…However, they are no less important as a source of information. Additionally, the social dimension of Total Care considers the role of the informal caregivers and their care needs – these are the relatives, family, neighbors, and friends who have the double-edged role of those who are caregivers and due to their physical and emotional involvement in need of care at the same time [ 11 , 51 ]. The impact of the SST’s collection of patient data on informal caregivers is twofold: On the one hand, the collected data may allow sensitive inferences about the caregivers and thus, privacy invasions.…”