Pancreatic cancer and supportive care—pancreatic exocrine insufficiency negatively impacts on quality of life
Abstract
Purpose Pancreatic cancer is a fatal cancer with a median survival from diagnosis of around 5 months Speer et al. (Med J Aust 196(8):511-515, 2012). Given the short survival time for people with pancreatic cancer, effective supportive care is imperative to enable best quality of life. This article presents an unexpected finding from research into the psychosocial supportive care needs of people affected by pancreatic cancer that management of pancreatic exocrine insufficiency is an area of unmet need that severely impacts on quality of life and increases carer burden in people affected by pancreatic cancer. Methods A qualitative inquiry framework was used to explore participants' perspectives and experience. Two groups of participants (N = 35) were recruited across Australia from people accessing the Cancer Helpline or direct referral from clinicians/nurses: patients diagnosed with pancreatic cancer (N = 12) and carers/family (N = 23) including a subgroup of bereaved participants (N = 14). Sampling continued until saturation. A thematic content analysis was conducted. Results The findings revealed that the major quality of life theme was difficulty in managing gut symptoms and complex dietary issues. Issues were related to lack of information about malabsorption and managing symptoms of pancreatic exocrine insufficiency. This was compounded by a lack of routine dietary consultation: perceived reluctance of clinicians to prescribe enzyme supplements and poor understanding of d…
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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 [30]
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 [30]
From a maximum of 22 points, three qualitative studies scored 17 points and two scored 18 points.
“From a maximum of 22 points, three studies scored 17 points [27–30] and two studies scored 18 points [31].”
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 [30]
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 [30]
The lack of consideration for the relationship between researcher and participants and unsatisfactory data analysis were the two most frequent reasons points were deducted during quality assessments.
“The lack of consideration for the relationship between researcher and participants [30, 31] and unsatisfactory data analysis [27–30] were the two most frequent reasons points were deducted during quality assessments.”
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 [30]
Informal caregivers experienced guilt for pressuring patients to adhere to a dietary regimen or treatment plan.
“Apart from inability to control symptoms, informal caregivers also experienced guilt for pressuring patients to adhere to a dietary regimen or treatment plan [29, 30].”
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 [30]
Digestive symptoms (loss of appetite, weight loss, nausea, and constipation) and side effects of treatment were sources of informal caregivers' distress.
“Digestive symptoms (for example, loss of appetite [28, 30], weight loss [30], nausea [28], and constipation [28]) and side effects of treatment [28] were the sources of informal caregivers’ distress.”
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 [30]
The correlation between patients and carers levels of depression was high (correlation 0.53; p < 0.001).
“The correlation between patients and carers levels of depression was high (correlation 0.53; p < 0.001) [30]”
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 [30]
There was a significant association between patient and carer anxiety levels (p 0.027).
“Significant association between patient and carer anxiety levels (p 0.027) [30]”
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 [30]
Guilt also arose when patients developed treatment side effects as caregivers viewed themselves as responsible in causing the side effects due to their role in supporting patients to receive treatment.
“Guilt also arose when patients developed treatment side effects as caregivers viewed themselves as responsible in causing the side effects due to their role in supporting patients to receive treatment [29, 30].”
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 [30]
Three studies contained qualitative data illustrating caregiver burden.
“Three studies contained qualitative data illustrating caregiver burden [28–30].”
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 [30]
Guilt was also experienced by bereaved informal caregivers when symptoms were not adequately managed when patients were alive.
“Guilt was also experienced by bereaved informal caregivers when symptoms were not adequately managed when patients were alive [30].”
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 [30]
HADS scores indicating clinical levels of anxiety were present in 39% of carers.
“HADS scores indicating clinical levels of anxiety were present in 39% of carers [30].”
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 [30]
15% of carers reported depression scores indicating clinical levels.
“15% of carers reported depression scores indicating clinical levels [30]”
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 [30]
Among patients and carers, accessing professional psychological help was significantly associated with subclinical or clinical HADS anxiety, and it was additionally associated with poorer QoL among patients.
“Among patients and carers, accessing professional psychological help was significantly associated with subclinical or clinical HADS anxiety, and it was additionally associated with poorer QoL among patients [30]”
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 [30]
Informal caregivers felt sad and 'helpless' when patients' symptoms persisted despite the caregivers' efforts to control them.
“Informal caregivers felt sad and ‘helpless’ when patients’ symptoms persisted despite the caregivers’ efforts to control them [30].”
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 [30]
Some informal caregivers reacted with anger and frustration towards the situation, which later led to guilt.
“Some informal caregivers reacted with anger and frustration towards the situation which later led to guilt [30].”
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 [30]
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
“Informal caregivers felt sad and ‘helpless’ when patients’ symptoms persisted despite the caregivers’ efforts to control them [30].”
Influential
- Authors
- Gooden, H. M., & White, K. J.
- Affiliations
- The University of Sydney (AU)
- Corresponding author
- Gooden, H. M.
- ORCID
- White, K. J.
- Venue
- Supportive Care in Cancer
- Published
- 2013-02-10
- Volume
- 21
- Issue
- 7
- Pages
- 1835-1841
- ISSN
- 0941-4355 (ISSN-L)
- 1433-7339
- OpenAlex
- W1974209079
- Cited by
- 129
- References
- 0
- Citations by year
- 2026: 3 · 2025: 8 · 2024: 17 · 2023: 8 · 2022: 18 · 2021: 13 · 2020: 16 · 2019: 7 · 2018: 14 · 2017: 9 · 2016: 6 · 2015: 4 · 2014: 5 · 2013: 1
- FWCI
- 2.85
- Type
- journal article
- Language
- en
- Open access
- closed
- Licence
- www.springer.com/tdm (tdm)
- Locations
- Supportive Care in Cancer (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Australian Government
- Anhui University of Science and Technology
- Cancer Council NSW
- Topics
- Health Sciences › Medicine › Oncology › Pancreatic and Hepatic Oncology Research
- Health Sciences › Medicine › Oncology › Cancer survivorship and care
- Health Sciences › Medicine › Surgery › Pancreatitis Pathology and Treatment
- Keywords
- pancreatic cancer, exocrine pancreatic insufficiency, quality of life, supportive care, psychosocial needs, caregiver burden, bereaved families, pancreatic enzyme replacement therapy, dietary recommendations, malabsorption, gastrointestinal symptoms, unmet needs, patient and caregiver perspectives
- MeSH terms
- Adult, Aged, Female, Health Services Needs and Demand, Humans, Male, Middle Aged, Palliative Care, Exocrine Pancreatic Insufficiency, Pancreatic Neoplasms, Quality of Life, Social Support, Caregivers
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