Assessing impact, needs and quality-of-life among informal carers of people with pancreatic cancer, a prospective study: the PAN-CARER study protocol.
Pancreatic surgery
SOCIAL MEDICINE
Journal
BMJ open
ISSN: 2044-6055
Titre abrégé: BMJ Open
Pays: England
ID NLM: 101552874
Informations de publication
Date de publication:
15 05 2023
15 05 2023
Historique:
medline:
17
5
2023
pubmed:
16
5
2023
entrez:
15
5
2023
Statut:
epublish
Résumé
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. 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. 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.
Identifiants
pubmed: 37188466
pii: bmjopen-2022-068178
doi: 10.1136/bmjopen-2022-068178
pmc: PMC10186426
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
e068178Informations de copyright
© 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.
Déclaration de conflit d'intérêts
Competing interests: None declared.
Références
Eur J Cancer Care (Engl). 2018 Mar;27(2):e12520
pubmed: 27271027
Palliat Support Care. 2013 Jun;11(3):231-52
pubmed: 23046977
Support Care Cancer. 2007 Apr;15(4):405-15
pubmed: 17043776
Pancreatology. 2017 Mar - Apr;17(2):321-327
pubmed: 28153446
J Cancer Surviv. 2017 Feb;11(1):48-57
pubmed: 27423439
BMJ Open. 2019 Nov 4;9(11):e032681
pubmed: 31690609
Ann Intern Med. 2013 Feb 5;158(3):200-7
pubmed: 23295957
Support Care Cancer. 2016 Oct;24(10):4283-91
pubmed: 27185021
Cancer. 2016 Jul 1;122(13):1987-95
pubmed: 26991807
Eur J Cancer Care (Engl). 2019 Jul;28(4):e13042
pubmed: 30990936
J Clin Nurs. 2016 Aug;25(15-16):2317-27
pubmed: 27161808
Psychooncology. 2016 Dec;25(12):1441-1447
pubmed: 26810446
J Pain Symptom Manage. 2014 Sep;48(3):385-99.e1-2
pubmed: 24291294
Eur J Oncol Nurs. 2020 Feb 8;46:101729
pubmed: 32339910
J Clin Nurs. 2016 Jun;25(11-12):1576-86
pubmed: 27139171
Res Nurs Health. 1992 Aug;15(4):271-83
pubmed: 1386680
J Oncol Pract. 2013 Jul;9(4):197-202
pubmed: 23942921
Support Care Cancer. 2013 Jul;21(7):1835-41
pubmed: 23397095
Psychooncology. 2011 Apr;20(4):387-93
pubmed: 20878835
Palliat Support Care. 2009 Sep;7(3):281-8
pubmed: 19788769
BMC Palliat Care. 2018 Jul 23;17(1):96
pubmed: 30037346
Psychooncology. 2013 Nov;22(11):2399-407
pubmed: 23712938
Support Care Cancer. 2016 Aug;24(8):3589-99
pubmed: 27086312
Support Care Cancer. 2015 Jul;23(7):1941-9
pubmed: 25504527