Profile of the Postoperative Care Provided for Patients With Pancreatic and Periampullary Cancers by Family and Unpaid Caregivers

Abstract

PURPOSE Patients with pancreatic and periampullary cancers may experience significant reduction in their quality of life and often rely on family and unpaid caregivers for assistance after surgery. However, as caregivers are not systematically identified, little is known about the nature, difficulty, and personal demands of assistance they provide. We aim to assess the frequency and difficulty of specific assistance caregivers provide and identify potential interventions that could alleviate the caregiving demands. METHODS This was a prospective, multi-institutional study of caregivers accompanying patients with periampullary and pancreatic cancer at their 1-month postpancreatectomy office visit. An instrument that drew heavily on the National Study of Caregiving was administered to caregivers. RESULTS Of 240 caregivers, more than half (58.3%) of caregivers were the patients' spouse, a quarter (25.8%) were daughters or sons, 12.9% other relatives, and 2.9% nonrelatives. Caregivers least frequently provided assistance with transportation (14.6% every day) and most frequently provided assistance with housework (65.0% every day, P = .003) and diet (56.5% every day, P = .004). Caregivers reported the least difficulty helping patients with exercise (1.5% somewhat difficult). Caregivers reported significantly more difficulty with assisting with housework (14.5% somewhat difficult, P < .001) and diet (14.9% somewhat difficult, P < .001). Caregivers identified the immediate postpancreatectomy and early discharge periods as the most stressful phases. They also reported having received very little information about available services that could have supported their efforts. CONCLUSION Caregivers of patients with periampullary or pancreatic cancer provide considerable assistance in the postoperative period and many reported difficulty in assisting with housework and diet. Work is needed to better prepare and support caregivers to better enable them to adequately care for patients with pancreas and periampullary cancer.

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

“…[17][18][19] In fact, a study by Engebretson et al 20 found that almost half of pancreatic cancer caregivers had to quit their job to care for their loved one. There were similar indications from the qualitative portion of Fong et al 8 such that caregivers struggled with understanding billing and preparing financially for the level of care required. With this, tailoring support to consider the distinct needs of different at-risk caregivers across the disease trajectory and across multiple domains of functioning is ideal-not only for the well-being of the caregiver but also for the well-being of the patient.…”

“…The age composition of the sample in the study of Fong et al 8 highlights the growing trend of young adult caregivers: 26% of the study's sample were the adult child of the patient, and 22% had at least one child of their own younger than 18 years. These young adult caregivers must integrate their career with other care responsibilities and are at a much greater risk of financial toxicity than older adult caregivers.…”

“…The results of the study of Fong et al 8 highlight the nuanced challenges of this subgroup of caregivers. 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.…”

“…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.…”

“…Nevertheless, much remains unknown about this group of caregivers, and there is an opportunity to build on the formative work conducted by Fong et al 8 First, in addition to describing the rates of depressive and anxious symptoms, we must understand which caregivers are most at risk for poor mental health outcomes by examining intrapersonal patient and caregiver sociodemographic and sociocultural factors that are most closely related to mood symptoms. For example, evidence suggests that lower education, patients' quality of life, patients' prognostic awareness, chronic comorbidities, and bereavement are factors that place pancreatic cancer caregivers at a greater risk for depressive symptoms, although confirmatory studies are needed.…”