A patient-led survey on information and communication needs of patients with metastatic breast cancer in Ireland and Northern Ireland (CTRIAL-IE 23–05)
Introduction: Although treatment advances have improved survival rates for patients with metastatic breast cancer (MBC), patient expressed needs have not been evaluated in Ireland to date. Methods: A 76 item questionnaire was designed by the lead author and a cohort of 41 other MBC patients in colla...
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| Language: | English |
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Elsevier
2025-02-01
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| Series: | Breast |
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| Online Access: | http://www.sciencedirect.com/science/article/pii/S0960977624001681 |
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| author | Siobhan Gaynor Yvonne O'Meara Emer Mulvaney Rachel J. Keogh Catherine S. Weadick Fran J. Duane Ann Mc Brien Helen Greally Mary Jane O'Leary Ieva Teiserskyte Isabel Beristain Jacinta Marron Eibhlin Mulroe Vicky Donachie Sarah Mc Loughlin Seamus O'Reilly |
| author_facet | Siobhan Gaynor Yvonne O'Meara Emer Mulvaney Rachel J. Keogh Catherine S. Weadick Fran J. Duane Ann Mc Brien Helen Greally Mary Jane O'Leary Ieva Teiserskyte Isabel Beristain Jacinta Marron Eibhlin Mulroe Vicky Donachie Sarah Mc Loughlin Seamus O'Reilly |
| author_sort | Siobhan Gaynor |
| collection | DOAJ |
| description | Introduction: Although treatment advances have improved survival rates for patients with metastatic breast cancer (MBC), patient expressed needs have not been evaluated in Ireland to date. Methods: A 76 item questionnaire was designed by the lead author and a cohort of 41 other MBC patients in collaboration with a multidisciplinary team. The online survey was publicised nationally on all media platforms. Results: 246 patients completed the survey between July and October 2023. Most patients were satisfied with the manner of disclosure of their diagnosis but 77 % wanted more prognostic information. Disparate information sources were used to provide support. Only 35 % of patients had access to their records, yet 99 % of patients without access desired to have it. The majority (83 %) of patients were amenable to earlier palliative care referral. The symptom burden of respondents was high, 87 % experienced mental health issues and 68 % of those with menopausal symptoms were dissatisfied with the support. These burdens were compounded by financial stress with 20 % of patient unable to meet monthly expenses and by time toxicity with 25 % attending emergency departments in the previous 6 months. Conclusion: Currently the needs of MBC patients in Ireland and Northern Ireland have many unmet needs. The routine early provision of palliative care, psycho-oncology, medical social worker and dedicated liaison nurse supports guided by national guidelines and education for healthcare professionals, integrated with living well with cancer clinics and a dedicated medically verified website would provide an ecosystem where MBC care could be optimised for patients and their families. |
| format | Article |
| id | doaj-art-cb0881cb7fc4467c9d8fbfd545beadde |
| institution | Kabale University |
| issn | 1532-3080 |
| language | English |
| publishDate | 2025-02-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Breast |
| spelling | doaj-art-cb0881cb7fc4467c9d8fbfd545beadde2025-02-12T05:30:33ZengElsevierBreast1532-30802025-02-0179103837A patient-led survey on information and communication needs of patients with metastatic breast cancer in Ireland and Northern Ireland (CTRIAL-IE 23–05)Siobhan Gaynor0Yvonne O'Meara1Emer Mulvaney2Rachel J. Keogh3Catherine S. Weadick4Fran J. Duane5Ann Mc Brien6Helen Greally7Mary Jane O'Leary8Ieva Teiserskyte9Isabel Beristain10Jacinta Marron11Eibhlin Mulroe12Vicky Donachie13Sarah Mc Loughlin14Seamus O'Reilly15Cancer Trials Ireland, RCSI House, 123 Stephens Green, Dublin 2, IrelandUniversity College Dublin, Dublin 7, IrelandCancer Trials Ireland, RCSI House, 123 Stephens Green, Dublin 2, IrelandUniversity Hospital Galway, Galway, IrelandCork University Hospital/ University College Cork Cancer Centre, Cork, IrelandSt Luke's Radiation Oncology Network, Dublin, IrelandNorthern Ireland Cancer Research Consumer Forum, IrelandCancer Care West, Galway, IrelandCork University Hospital/ University College Cork Cancer Centre, Cork, Ireland; Marymount University Hospice and Hospital, Cork, IrelandCancer Trials Ireland, RCSI House, 123 Stephens Green, Dublin 2, IrelandCancer Trials Ireland, RCSI House, 123 Stephens Green, Dublin 2, IrelandCancer Trials Ireland, RCSI House, 123 Stephens Green, Dublin 2, IrelandCancer Trials Ireland, RCSI House, 123 Stephens Green, Dublin 2, IrelandCancer Trials Ireland, RCSI House, 123 Stephens Green, Dublin 2, IrelandCancer Trials Ireland, RCSI House, 123 Stephens Green, Dublin 2, IrelandCancer Trials Ireland, RCSI House, 123 Stephens Green, Dublin 2, Ireland; Cork University Hospital/ University College Cork Cancer Centre, Cork, Ireland; Corresponding author. Cancer Trials Ireland, RCSI House, 123 Stephens Green, Dublin 2, Ireland.Introduction: Although treatment advances have improved survival rates for patients with metastatic breast cancer (MBC), patient expressed needs have not been evaluated in Ireland to date. Methods: A 76 item questionnaire was designed by the lead author and a cohort of 41 other MBC patients in collaboration with a multidisciplinary team. The online survey was publicised nationally on all media platforms. Results: 246 patients completed the survey between July and October 2023. Most patients were satisfied with the manner of disclosure of their diagnosis but 77 % wanted more prognostic information. Disparate information sources were used to provide support. Only 35 % of patients had access to their records, yet 99 % of patients without access desired to have it. The majority (83 %) of patients were amenable to earlier palliative care referral. The symptom burden of respondents was high, 87 % experienced mental health issues and 68 % of those with menopausal symptoms were dissatisfied with the support. These burdens were compounded by financial stress with 20 % of patient unable to meet monthly expenses and by time toxicity with 25 % attending emergency departments in the previous 6 months. Conclusion: Currently the needs of MBC patients in Ireland and Northern Ireland have many unmet needs. The routine early provision of palliative care, psycho-oncology, medical social worker and dedicated liaison nurse supports guided by national guidelines and education for healthcare professionals, integrated with living well with cancer clinics and a dedicated medically verified website would provide an ecosystem where MBC care could be optimised for patients and their families.http://www.sciencedirect.com/science/article/pii/S0960977624001681MetastaticPatient-ledPalliative careToxicityBreast cancer |
| spellingShingle | Siobhan Gaynor Yvonne O'Meara Emer Mulvaney Rachel J. Keogh Catherine S. Weadick Fran J. Duane Ann Mc Brien Helen Greally Mary Jane O'Leary Ieva Teiserskyte Isabel Beristain Jacinta Marron Eibhlin Mulroe Vicky Donachie Sarah Mc Loughlin Seamus O'Reilly A patient-led survey on information and communication needs of patients with metastatic breast cancer in Ireland and Northern Ireland (CTRIAL-IE 23–05) Breast Metastatic Patient-led Palliative care Toxicity Breast cancer |
| title | A patient-led survey on information and communication needs of patients with metastatic breast cancer in Ireland and Northern Ireland (CTRIAL-IE 23–05) |
| title_full | A patient-led survey on information and communication needs of patients with metastatic breast cancer in Ireland and Northern Ireland (CTRIAL-IE 23–05) |
| title_fullStr | A patient-led survey on information and communication needs of patients with metastatic breast cancer in Ireland and Northern Ireland (CTRIAL-IE 23–05) |
| title_full_unstemmed | A patient-led survey on information and communication needs of patients with metastatic breast cancer in Ireland and Northern Ireland (CTRIAL-IE 23–05) |
| title_short | A patient-led survey on information and communication needs of patients with metastatic breast cancer in Ireland and Northern Ireland (CTRIAL-IE 23–05) |
| title_sort | patient led survey on information and communication needs of patients with metastatic breast cancer in ireland and northern ireland ctrial ie 23 05 |
| topic | Metastatic Patient-led Palliative care Toxicity Breast cancer |
| url | http://www.sciencedirect.com/science/article/pii/S0960977624001681 |
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