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Assessing impact, needs and quality-of-life among informal carers of people with pancreatic cancer, a prospective study: the PAN-CARER study protocol

Lookup NU author(s): Professor Linda Sharp, Dr Keno Mentor, Jennifer DeaneORCiD, Keith Roberts, John Hammond, Dr Alex Bradshaw, Professor Catherine Exley, Sanjay PandanaboyanaORCiD



This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License (CC BY-NC 4.0).


© Author(s) (or their employer(s)) 2023. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.INTRODUCTION: Approximately 10 300 people are diagnosed with pancreatic cancer each year in the UK. The cancer and its treatment inflict a significant physical, functional and emotional burden on patients. Research suggests that patients have many ongoing needs for support and care, but that these needs are not met by existing services. Family members often step in to fill this gap and provide support and care during and after treatment. Research in other cancers shows that this informal caregiving can place a very heavy burden on carers. However, there are few studies in the international literature that have focused on informal carers in pancreatic cancer; none have been conducted in the UK. METHODS AND ANALYSIS: Two complementary research methods will be utilised. First, a longitudinal quantitative study of 300 carers investigating, using validated questionnaires to assess the impact of caregiving (Caregiver Reaction Assessment), the unmet needs of carers (Supportive Care Needs Survey) and the quality-of-life (Short Form 12-item health survey), will be conducted. Second, qualitative interviews will be conducted with up to 30 carers to explore their experiences in more depth. Mixed-effects regression models will be applied to survey results to determine how impact, needs and quality-of-life vary over time, compare outcomes between carers of patients with operable and inoperable disease and identify social factors which affect outcomes. Interview data will undergo reflexive thematic analysis. ETHICS AND DISSEMINATION: The protocol has been approved by the Health Research Authority of the UK (Ethical approval IRAS ID 309503). Findings will be published in peer-reviewed journals and presented at national and international conferences.

Publication metadata

Author(s): Sharp L, Mentor K, Deane J, Watson E, Roberts KJ, Silva M, Phillips M, Siriwardena AK, Hammond J, Bradshaw A, Exley C, Pandanaboyana S

Publication type: Article

Publication status: Published

Journal: BMJ open

Year: 2023

Volume: 13

Issue: 5

Online publication date: 15/05/2023

Acceptance date: 25/11/2022

Date deposited: 30/05/2023

ISSN (electronic): 2044-6055

Publisher: BMJ Group


DOI: 10.1136/bmjopen-2022-068178

PubMed id: 37188466


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