{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2025,12,6]],"date-time":"2025-12-06T08:19:51Z","timestamp":1765009191115,"version":"3.46.0"},"reference-count":28,"publisher":"BMJ","issue":"5","license":[{"start":{"date-parts":[[2023,5,15]],"date-time":"2023-05-15T00:00:00Z","timestamp":1684108800000},"content-version":"unspecified","delay-in-days":14,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"}],"funder":[{"DOI":"10.13039\/100009795","name":"Pancreatic Cancer UK","doi-asserted-by":"publisher","award":["NA"],"award-info":[{"award-number":["NA"]}],"id":[{"id":"10.13039\/100009795","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["BMJ Open"],"accepted":{"date-parts":[[2022,11,25]]},"published-print":{"date-parts":[[2023,5]]},"abstract":"<jats:sec>\n                    <jats:title>Introduction<\/jats:title>\n                    <jats:p>Approximately 10\u2009300 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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods and analysis<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Ethics and dissemination<\/jats:title>\n                    <jats:p>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.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1136\/bmjopen-2022-068178","type":"journal-article","created":{"date-parts":[[2023,5,15]],"date-time":"2023-05-15T10:51:49Z","timestamp":1684147909000},"page":"e068178","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":4,"title":["Assessing impact, needs and quality-of-life among informal carers of people with pancreatic cancer, a prospective study: the PAN-CARER study protocol"],"prefix":"10.1136","volume":"13","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9515-1722","authenticated-orcid":false,"given":"Linda","family":"Sharp","sequence":"first","affiliation":[{"name":"Population Health Sciences Institute, Newcastle University, Newcastle Upon Tyne, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8260-6660","authenticated-orcid":false,"given":"Keno","family":"Mentor","sequence":"additional","affiliation":[{"name":"Population Health Sciences Institute, Newcastle University, Newcastle Upon Tyne, UK"},{"name":"HPB and Transplant Unit, Freeman Hospital, Newcastle upon Tyne, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jennifer","family":"Deane","sequence":"additional","affiliation":[{"name":"Population Health Sciences Institute, Newcastle University, Newcastle Upon Tyne, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3592-1315","authenticated-orcid":false,"given":"Eila","family":"Watson","sequence":"additional","affiliation":[{"name":"Clinical Health Care, Oxford Brookes University, Oxford, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Keith J","family":"Roberts","sequence":"additional","affiliation":[{"name":"Liver Unit, University Hospitals Birmingham NHS Foundation Trust, Birmingham, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michael","family":"Silva","sequence":"additional","affiliation":[{"name":"Oxford University Hospitals NHS Foundation Trust, Oxford, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Mary","family":"Phillips","sequence":"additional","affiliation":[{"name":"Royal Surrey NHS Foundation Trust, Guildford, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Ajith Kumar","family":"Siriwardena","sequence":"additional","affiliation":[{"name":"HPB Unit, Manchester Royal Infirmary, Manchester, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"John","family":"Hammond","sequence":"additional","affiliation":[{"name":"HPB and Transplant unit, Freeman Hospital, Newcastle upon Tyne, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Alex","family":"Bradshaw","sequence":"additional","affiliation":[{"name":"Sunderland Royal Hospital, Sunderland, Tyne and Wear, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Catherine","family":"Exley","sequence":"additional","affiliation":[{"name":"Population Health Sciences Institute, Newcastle University, Newcastle Upon Tyne, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3099-2197","authenticated-orcid":false,"given":"Sanjay","family":"Pandanaboyana","sequence":"additional","affiliation":[{"name":"Population Health Sciences Institute, Newcastle University, Newcastle Upon Tyne, UK"},{"name":"HPB and Transplant unit, Freeman Hospital, Newcastle upon Tyne, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"239","published-online":{"date-parts":[[2023,5,15]]},"reference":[{"key":"2025120600171561000_13.5.e068178.1","doi-asserted-by":"publisher","DOI":"10.1007\/s00520-013-1729-3"},{"key":"2025120600171561000_13.5.e068178.2","doi-asserted-by":"crossref","first-page":"101729","DOI":"10.1016\/j.ejon.2020.101729","article-title":"Supporting patients and carers affected by Pancreatic cancer: a feasibility study of a counselling intervention","volume":"46","author":"Beesley","year":"2020","journal-title":"Eur J Oncol Nurs"},{"key":"2025120600171561000_13.5.e068178.3","first-page":"3589","article-title":"Risk factors for current and future unmet supportive care needs of people with Pancreatic cancer. A longitudinal study","volume":"24","author":"Beesley","year":"2016","journal-title":"Support Care Cancer"},{"key":"2025120600171561000_13.5.e068178.4","doi-asserted-by":"crossref","DOI":"10.1136\/bmjopen-2019-032681","article-title":"Experiences and supportive care needs of UK patients with Pancreatic cancer: a cross-sectional questionnaire survey","volume":"9","author":"Watson","year":"2019","journal-title":"BMJ Open"},{"key":"2025120600171561000_13.5.e068178.5","doi-asserted-by":"publisher","DOI":"10.1017\/S1478951512000594"},{"key":"2025120600171561000_13.5.e068178.6","doi-asserted-by":"publisher","DOI":"10.1002\/pon.3311"},{"key":"2025120600171561000_13.5.e068178.7","doi-asserted-by":"crossref","first-page":"1987","DOI":"10.1002\/cncr.29939","article-title":"Caring for caregivers and patients: research and clinical priorities for informal cancer caregiving","volume":"122","author":"Kent","year":"2016","journal-title":"Cancer"},{"key":"2025120600171561000_13.5.e068178.8","article-title":"Informal caregiving in head and neck cancer: caregiving activities and psychological well-being","volume":"27","author":"Balfe","year":"2018","journal-title":"Eur J cancer care"},{"key":"2025120600171561000_13.5.e068178.9","doi-asserted-by":"crossref","first-page":"48","DOI":"10.1007\/s11764-016-0560-5","article-title":"Employment implications of informal cancer caregiving","volume":"11","author":"de Moor","year":"2017","journal-title":"J Cancer Surviv"},{"key":"2025120600171561000_13.5.e068178.10","doi-asserted-by":"publisher","DOI":"10.1200\/JOP.2012.000690"},{"key":"2025120600171561000_13.5.e068178.11","doi-asserted-by":"crossref","first-page":"2317","DOI":"10.1111\/jocn.13242","article-title":"Distress in long-term head and neck cancer carers: a qualitative study of carers' perspectives","volume":"25","author":"Balfe","year":"2016","journal-title":"J Clin Nurs"},{"key":"2025120600171561000_13.5.e068178.12","doi-asserted-by":"crossref","first-page":"1441","DOI":"10.1002\/pon.4079","article-title":"The financial impact of head and neck cancer caregiving: a qualitative study","volume":"25","author":"Balfe","year":"2016","journal-title":"Psychooncol"},{"key":"2025120600171561000_13.5.e068178.13","doi-asserted-by":"crossref","DOI":"10.1186\/s12904-018-0346-9","article-title":"Unmet care needs of advanced cancer patients and their informal caregivers: a systematic review","volume":"17","author":"Wang","year":"2018","journal-title":"BMC Palliat Care"},{"key":"2025120600171561000_13.5.e068178.14","first-page":"1941","article-title":"Examining the role of subjective and objective burden in carer health-related quality of life: the case of colorectal cancer","volume":"23","author":"Hanly","year":"2015","journal-title":"Support Care Cancer"},{"key":"2025120600171561000_13.5.e068178.15","article-title":"The impact of informal cancer caregiving: a literature review on psychophysiological studies","volume":"28","author":"Teixeira","year":"2019","journal-title":"Eur J Cancer Care"},{"key":"2025120600171561000_13.5.e068178.16","doi-asserted-by":"crossref","first-page":"1576","DOI":"10.1111\/jocn.13140","article-title":"The unmet supportive care needs of long-term head and neck cancer caregivers in the extended survivorship period","volume":"25","author":"Balfe","year":"2016","journal-title":"J Clin Nurs"},{"key":"2025120600171561000_13.5.e068178.17","first-page":"4283","article-title":"Burden and happiness in head and neck cancer carers: the role of supportive care needs","volume":"24","author":"Hanly","year":"2016","journal-title":"Support Care Cancer"},{"key":"2025120600171561000_13.5.e068178.18","doi-asserted-by":"publisher","DOI":"10.1007\/s00520-006-0148-0"},{"key":"2025120600171561000_13.5.e068178.19","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpainsymman.2013.09.006"},{"key":"2025120600171561000_13.5.e068178.20","unstructured":"O\u2019Driscoll D , O\u2019Rorke M , O\u2019Keeffe L , et al . Burden on primary caregivers of individuals with Pancreatic cancer. NCRI conference; 2010"},{"key":"2025120600171561000_13.5.e068178.21","doi-asserted-by":"crossref","first-page":"281","DOI":"10.1017\/S1478951509990204","article-title":"Adjusting to Pancreatic cancer: perspectives from first- degree relatives","volume":"7","author":"Petrin","year":"2009","journal-title":"Palliat Support Care"},{"key":"2025120600171561000_13.5.e068178.22","doi-asserted-by":"crossref","first-page":"321","DOI":"10.1016\/j.pan.2017.01.008","article-title":"Anxiety, depression and quality of life in people with Pancreatic cancer and their carers","volume":"17","author":"Janda","year":"2017","journal-title":"Pancreatology"},{"key":"2025120600171561000_13.5.e068178.23","unstructured":"SPIRIT 2013 statement: defining standard protocol items for clinical trials | Annals of Internal Medicine. 2013. Available: https:\/\/www.acpjournals.org\/doi\/10.7326\/0003-4819-158-3-201302050-00583 [Accessed 04 Jul 2022]."},{"key":"2025120600171561000_13.5.e068178.24","doi-asserted-by":"publisher","DOI":"10.1002\/nur.4770150406"},{"key":"2025120600171561000_13.5.e068178.25","doi-asserted-by":"publisher","DOI":"10.1002\/pon.1740"},{"key":"2025120600171561000_13.5.e068178.26","unstructured":"Saris-Baglama RN , Dewey CJ , Chisholm GB , et al . Qualitymetric health outcomes\u2122 scoring software 3.0 user\u2019s guide; 2007."},{"key":"2025120600171561000_13.5.e068178.27","doi-asserted-by":"crossref","unstructured":"Brown H , Prescott R . Applied mixed models in medicine. In: Statistics in practice. Chichester, UK: John Wiley & Sons, 2006.","DOI":"10.1002\/0470023589"},{"key":"2025120600171561000_13.5.e068178.28","doi-asserted-by":"crossref","first-page":"589","DOI":"10.1080\/2159676X.2019.1628806","article-title":"Reflecting on reflexive thematic analysis","volume":"11","author":"Braun","year":"2019","journal-title":"Qual Res Sport Exercise Health"}],"container-title":["BMJ Open"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.1136\/bmjopen-2022-068178","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,12,6]],"date-time":"2025-12-06T08:17:24Z","timestamp":1765009044000},"score":1,"resource":{"primary":{"URL":"https:\/\/bmjopen.bmj.com\/lookup\/doi\/10.1136\/bmjopen-2022-068178"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2023,5]]},"references-count":28,"journal-issue":{"issue":"5","published-online":{"date-parts":[[2023,5,15]]},"published-print":{"date-parts":[[2023,5]]}},"alternative-id":["10.1136\/bmjopen-2022-068178"],"URL":"https:\/\/doi.org\/10.1136\/bmjopen-2022-068178","relation":{},"ISSN":["2044-6055","2044-6055"],"issn-type":[{"type":"print","value":"2044-6055"},{"type":"electronic","value":"2044-6055"}],"subject":[],"published":{"date-parts":[[2023,5]]}}}