People with early-onset colorectal cancer describe primary care barriers to timely diagnosis: a mixed-methods study of web-based patient reports in the United Kingdom, Australia and New Zealand
Abstract Background People with early-onset colorectal cancer, under the age of 50, are more likely to experience diagnostic delay and to be diagnosed at later stages of the disease than older people. Advanced stage diagnosis potentially requires invasive therapeutic management at a time of life whe...
| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2023-01-01
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| Series: | BMC Primary Care |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s12875-023-01967-0 |
| _version_ | 1797952435798409216 |
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| author | Klay Lamprell Diana Fajardo Pulido Gaston Arnolda Bróna Nic Giolla Easpaig Yvonne Tran Syeda Somyyah Owais Winston Liauw Jeffrey Braithwaite |
| author_facet | Klay Lamprell Diana Fajardo Pulido Gaston Arnolda Bróna Nic Giolla Easpaig Yvonne Tran Syeda Somyyah Owais Winston Liauw Jeffrey Braithwaite |
| author_sort | Klay Lamprell |
| collection | DOAJ |
| description | Abstract Background People with early-onset colorectal cancer, under the age of 50, are more likely to experience diagnostic delay and to be diagnosed at later stages of the disease than older people. Advanced stage diagnosis potentially requires invasive therapeutic management at a time of life when these patients are establishing intimate relationships, raising families, building careers and laying foundations for financial stability. Barriers to timely diagnosis at primary care level have been identified but the patient perspective has not been investigated. Methods Personal accounts of cancer care are increasingly accessed as rich sources of patient experience data. This study uses mixed methods, incorporating quantitative content analysis and qualitative thematic analysis, to investigate patients’ accounts of early-onset colorectal cancer diagnosis published on prominent bowel cancer support websites in the United Kingdom, Australia and New Zealand. Results Patients’ perceptions (n = 273) of diagnostic barriers at primary care level were thematically similar across the three countries. Patients perceived that GPs’ low suspicion of cancer due to age under 50 contributed to delays. Patients reported that their GPs seemed unaware of early-onset colorectal cancer and that they were not offered screening for colorectal cancer even when ‘red flag’ symptoms were present. Patients described experiences of inadequate information continuity within GP practices and across primary, specialist and tertiary levels of care, which they perceived contributed to diagnostic delay. Patients also reported tensions with GPs over the patient-centredness of care, describing discord related to symptom seriousness and lack of shared decision-making. Conclusions Wider dissemination of information about early-onset colorectal cancer at primary care level is imperative given the increasing incidence of the disease, the frequency of diagnostic delay, the rates of late-stage diagnosis and the dissatisfaction with patient experience reported by patients whose diagnosis is delayed. Patient education about diagnostic protocols may help to pre-empt or resolve tensions between GPs’ enactment of value-based care and patients’ concerns about cancer. The challenges of diagnosing early-onset colorectal cancer are significant and will become more pressing for GPs, who will usually be the first point of access to a health system for this growing patient population. |
| first_indexed | 2024-04-10T22:46:16Z |
| format | Article |
| id | doaj.art-ac9afa5216164f188cc7ea3af728fc10 |
| institution | Directory Open Access Journal |
| issn | 2731-4553 |
| language | English |
| last_indexed | 2024-04-10T22:46:16Z |
| publishDate | 2023-01-01 |
| publisher | BMC |
| record_format | Article |
| series | BMC Primary Care |
| spelling | doaj.art-ac9afa5216164f188cc7ea3af728fc102023-01-15T12:17:17ZengBMCBMC Primary Care2731-45532023-01-0124111210.1186/s12875-023-01967-0People with early-onset colorectal cancer describe primary care barriers to timely diagnosis: a mixed-methods study of web-based patient reports in the United Kingdom, Australia and New ZealandKlay Lamprell0Diana Fajardo Pulido1Gaston Arnolda2Bróna Nic Giolla Easpaig3Yvonne Tran4Syeda Somyyah Owais5Winston Liauw6Jeffrey Braithwaite7Australian Institute of Health Innovation, Macquarie UniversityPontificia Universidad JaverianaAustralian Institute of Health Innovation, Macquarie UniversityCollege of Nursing and Midwifery, Charles Darwin UniversityMacquarie University Hearing, Macquarie UniversityAustralian Institute of Health Innovation, Macquarie UniversitySt. George Cancer Care Centre, St. George HospitalAustralian Institute of Health Innovation, Macquarie UniversityAbstract Background People with early-onset colorectal cancer, under the age of 50, are more likely to experience diagnostic delay and to be diagnosed at later stages of the disease than older people. Advanced stage diagnosis potentially requires invasive therapeutic management at a time of life when these patients are establishing intimate relationships, raising families, building careers and laying foundations for financial stability. Barriers to timely diagnosis at primary care level have been identified but the patient perspective has not been investigated. Methods Personal accounts of cancer care are increasingly accessed as rich sources of patient experience data. This study uses mixed methods, incorporating quantitative content analysis and qualitative thematic analysis, to investigate patients’ accounts of early-onset colorectal cancer diagnosis published on prominent bowel cancer support websites in the United Kingdom, Australia and New Zealand. Results Patients’ perceptions (n = 273) of diagnostic barriers at primary care level were thematically similar across the three countries. Patients perceived that GPs’ low suspicion of cancer due to age under 50 contributed to delays. Patients reported that their GPs seemed unaware of early-onset colorectal cancer and that they were not offered screening for colorectal cancer even when ‘red flag’ symptoms were present. Patients described experiences of inadequate information continuity within GP practices and across primary, specialist and tertiary levels of care, which they perceived contributed to diagnostic delay. Patients also reported tensions with GPs over the patient-centredness of care, describing discord related to symptom seriousness and lack of shared decision-making. Conclusions Wider dissemination of information about early-onset colorectal cancer at primary care level is imperative given the increasing incidence of the disease, the frequency of diagnostic delay, the rates of late-stage diagnosis and the dissatisfaction with patient experience reported by patients whose diagnosis is delayed. Patient education about diagnostic protocols may help to pre-empt or resolve tensions between GPs’ enactment of value-based care and patients’ concerns about cancer. The challenges of diagnosing early-onset colorectal cancer are significant and will become more pressing for GPs, who will usually be the first point of access to a health system for this growing patient population.https://doi.org/10.1186/s12875-023-01967-0Early-onset colorectal cancerPrimary careGPPatient experienceMixed methodsPatient-reported |
| spellingShingle | Klay Lamprell Diana Fajardo Pulido Gaston Arnolda Bróna Nic Giolla Easpaig Yvonne Tran Syeda Somyyah Owais Winston Liauw Jeffrey Braithwaite People with early-onset colorectal cancer describe primary care barriers to timely diagnosis: a mixed-methods study of web-based patient reports in the United Kingdom, Australia and New Zealand BMC Primary Care Early-onset colorectal cancer Primary care GP Patient experience Mixed methods Patient-reported |
| title | People with early-onset colorectal cancer describe primary care barriers to timely diagnosis: a mixed-methods study of web-based patient reports in the United Kingdom, Australia and New Zealand |
| title_full | People with early-onset colorectal cancer describe primary care barriers to timely diagnosis: a mixed-methods study of web-based patient reports in the United Kingdom, Australia and New Zealand |
| title_fullStr | People with early-onset colorectal cancer describe primary care barriers to timely diagnosis: a mixed-methods study of web-based patient reports in the United Kingdom, Australia and New Zealand |
| title_full_unstemmed | People with early-onset colorectal cancer describe primary care barriers to timely diagnosis: a mixed-methods study of web-based patient reports in the United Kingdom, Australia and New Zealand |
| title_short | People with early-onset colorectal cancer describe primary care barriers to timely diagnosis: a mixed-methods study of web-based patient reports in the United Kingdom, Australia and New Zealand |
| title_sort | people with early onset colorectal cancer describe primary care barriers to timely diagnosis a mixed methods study of web based patient reports in the united kingdom australia and new zealand |
| topic | Early-onset colorectal cancer Primary care GP Patient experience Mixed methods Patient-reported |
| url | https://doi.org/10.1186/s12875-023-01967-0 |
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