Pancreatic cancer: Patient and caregiver perceptions on diagnosis, psychological impact, and importance of support
Abstract
Background/objectives Pancreatic cancer (PC) can have an enormous psychological toll on those affected by it. This study evaluated patient and caregiver perceptions about diagnosis and daily life with PC. Methods The Pancreatic Cancer Action Network (PanCAN) administered a 25-min online survey (funded by Celgene) between July 30 and September 18, 2013 to patients with PC and caregivers whose loved ones were alive or had died within the past 6 months. Results There were 397 respondents (all in the US) including 184 patients (81 with metastatic disease) and 213 caregivers (145 with loved ones with metastatic disease); 80% of patients reported having a primary caregiver. Over 90% reported symptoms before diagnosis, the most common of which being acute abdominal pain, pain radiating into the back, and fatigue. Gastroenterologists were the diagnosing physician in 36.3% of cases. The mean duration from symptom onset to diagnosis was 2.4 months. The most common action taken by diagnosing physicians was referral to another physician (57.7%). No treatments were offered for 9% of patients with nonmetastatic disease and 17% of patients with metastatic disease. The most commonly reported caregiver roles were providing support on treatment days and talking to physicians. A greater percentage of caregivers than patients recognized the various roles played by caregivers. Patients aware of the PanCAN Patient and Liaison Services (PALS) program reported fewer negative emotions than PALS-unawa…
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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 and instrumental activities of daily living.
“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].”
From Systematic review of caregiver burden, unmet needs and quality-of-life among informal caregivers of patients with pancreatic cancer (2023) · cites this paper as [5]
Eight included studies were cross-sectional studies and one study was a prospective cohort design.
“Eight studies were cross-sectional studies [5, 27–33]. One study was a prospective cohort design [6].”
From Systematic review of caregiver burden, unmet needs and quality-of-life among informal caregivers of patients with pancreatic cancer (2023) · cites this paper as [5]
Data was collected through questionnaires alone in four studies, semi-structured interviews with individual participants in three studies, focus groups in two studies, and questionnaire and semi-structured interview together in one study.
“Data was collected through questionnaires alone in four studies [5, 32, 33], semi-structured interviews with individual participants in three studies [29–31], focus groups in two studies [27, 28] and questionnaire and semi-structured interview together in one study [29].”
From Systematic review of caregiver burden, unmet needs and quality-of-life among informal caregivers of patients with pancreatic cancer (2023) · cites this paper as [5]
Five included studies were conducted in the USA, three in Australia, and one in Denmark.
“Five studies (three qualitative, two quantitative) were conducted in the USA [5, 28, 29, 31, 33], three (two qualitative, one quantitative) in Australia [27, 30, 32] and one quantitative study in Denmark [6].”
From Systematic review of caregiver burden, unmet needs and quality-of-life among informal caregivers of patients with pancreatic cancer (2023) · cites this paper as [5]
Informal caregivers were predominantly spouses to patients with pancreatic cancer (98.6%, 6058/6142).
“Informal caregivers were predominantly spouses to patients with pancreatic cancer (98.6%, 6058/6142) [5, 6, 28, 33, 34].”
From Systematic review of caregiver burden, unmet needs and quality-of-life among informal caregivers of patients with pancreatic cancer (2023) · cites this paper as [5]
Feeling scared/anxious was reported by 12.2% of informal caregivers.
“Feeling scared/anxious was reported by 12.2% of informal caregivers [5].”
From Systematic review of caregiver burden, unmet needs and quality-of-life among informal caregivers of patients with pancreatic cancer (2023) · cites this paper as [5]
Feeling sad or depressed was reported by 17.4% of informal caregivers.
“Feeling sad or depressed was reported by 17.4% of informal caregivers [5]”
From Systematic review of caregiver burden, unmet needs and quality-of-life among informal caregivers of patients with pancreatic cancer (2023) · cites this paper as [5]
The cross-sectional design of the three poor-quality quantitative studies meant they scored 0 points on items assessing duration of follow-up and loss of participants.
“The cross-sectional design of the three studies meant they scored 0 points on items assessing duration of follow-up and loss of participants [5, 32, 33].”
From Systematic review of caregiver burden, unmet needs and quality-of-life among informal caregivers of patients with pancreatic cancer (2023) · cites this paper as [5]
All four quantitative studies scored 0 points for the item assessing prospective calculation of study size.
“All four studies scored 0 points for the item assessing prospective calculation of study size [5, 6, 32, 33].”
From Systematic review of caregiver burden, unmet needs and quality-of-life among informal caregivers of patients with pancreatic cancer (2023) · cites this paper as [5]
Four studies provided quantitative data on quality-of-life of informal caregivers of pancreatic cancer patients, and no studies provided qualitative data on quality-of-life.
“Four studies provided quantitative data on quality-of-life of informal caregivers [5, 6, 32, 33]. No studies provided qualitative data on quality-of-life of informal caregivers.”
From Systematic review of caregiver burden, unmet needs and quality-of-life among informal caregivers of patients with pancreatic cancer (2023) · cites this paper as [5]
In a survey of 213 informal caregivers, upon diagnosis of pancreatic cancer, 12.2% reported feeling scared/anxious and 17.4% reported feeling sad/depressed.
“A study which surveyed 213 informal caregivers found that upon diagnosis of pancreatic cancer, 12.2% and 17.4% of informal caregivers reported feeling scared/anxious and sad/depressed [5].”
From Systematic review of caregiver burden, unmet needs and quality-of-life among informal caregivers of patients with pancreatic cancer (2023) · cites this paper as [5]
Cited by
Sorted by citations
Chong, E., Crowe, L., Mentor, K., Pandanaboyana, S., & Sharp, L. (2023) · Supportive Care in Cancer · doi:10.1007/s00520-022-07468-7 · Cited by 86 · see citing works
“Four studies provided quantitative data on quality-of-life of informal caregivers [5, 6, 32, 33].”
InfluentialMosher, C. E., Secinti, E., Wu, W., Kashy, D. A., Kroenke, K., Bricker, J. B., Helft, P. R., Turk, A. A., Loehrer, P. J., Sehdev, A., et al. (2022) · Palliative Medicine · doi:10.1177/02692163221099610 · Cited by 34 · see citing works
- Authors
- Engebretson, A., Matrisian, L., & Thompson, C.
- Affiliations
- Pancreatic Cancer Action Network (US)
- Celgene (United States) (US)
- Corresponding author
- Engebretson, Anitra
- Venue
- Pancreatology
- Publisher
- Elsevier BV
- Published
- 2015-11
- Volume
- 15
- Issue
- 6
- Pages
- 701-707
- ISSN
- 1424-3903 (ISSN-L)
- OpenAlex
- W586849473
- Cited by
- 49
- References
- 0
- Citations by year
- 2026: 6 · 2025: 3 · 2024: 6 · 2023: 7 · 2022: 5 · 2021: 7 · 2020: 2 · 2019: 4 · 2018: 4 · 2017: 2 · 2016: 2 · 2015: 1
- FWCI
- 1.31
- Type
- journal article
- Language
- en
- Open access
- closed
- Locations
- Pancreatology (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Celgene Corporation
- Topics
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Health Sciences › Medicine › Oncology › Pancreatic and Hepatic Oncology Research
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Keywords
- pancreatic cancer, patient perspectives, caregiver perceptions, psychological impact, diagnosis, metastatic disease, caregiver role, support services, negative emotions, gastroenterologist referral
- MeSH terms
- Adaptation, Psychological, Data Collection, Family, Female, Patient Care, Humans, Male, Middle Aged, Pancreatic Neoplasms, Surveys and Questionnaires, Social Support, Caregivers
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