dc.contributor.author | Husson, O | |
dc.contributor.author | Younger, E | |
dc.contributor.author | Dunlop, A | |
dc.contributor.author | Dean, L | |
dc.contributor.author | Strauss, DC | |
dc.contributor.author | Benson, C | |
dc.contributor.author | Hayes, AJ | |
dc.contributor.author | Miah, A | |
dc.contributor.author | van Houdt, W | |
dc.contributor.author | Zaidi, S | |
dc.contributor.author | Smith, M | |
dc.contributor.author | Williams, J | |
dc.contributor.author | Jones, RL | |
dc.contributor.author | van der Graaf, WTA | |
dc.date.accessioned | 2018-07-27T10:24:11Z | |
dc.date.issued | 2019-03-01 | |
dc.identifier.citation | Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2019, 27 (3), pp. 965 - 980 | |
dc.identifier.issn | 0941-4355 | |
dc.identifier.uri | https://repository.icr.ac.uk/handle/internal/2191 | |
dc.identifier.eissn | 1433-7339 | |
dc.identifier.doi | 10.1007/s00520-018-4386-8 | |
dc.description.abstract | PURPOSE: Desmoid fibromatosis (DF) is a rare, unpredictable disease with no established, evidence-based treatments. Individual management is based on consensus algorithms. This study aimed to examine the specific health-related quality of life challenges faced by DF patients, current experiences and expectations of care. METHODS: Twenty-seven DF patients were purposively sampled from The Royal Marsden Hospital. Two focus groups and 13 interviews (males 12, females 15; mean age at study 39.5 years) explored health-related quality of life issues and experiences of healthcare. Thematic content was analysed. RESULTS: Discussions revealed four key themes (diagnostic pathway; treatment pathway; living with DF; supportive care). Diagnostic delay resulted from lack of recognition by patients and healthcare professionals. Some patients received an initial diagnosis of cancer, causing significant distress. Treatment decisions were challenging, and patients experienced uncertainty among clinicians about optimal therapies. Side-effects of treatment were severe, including fatigue, nausea, anorexia, low libido and depression. Pain was the most debilitating symptom and dependency on painkillers was a significant concern. Functional limitation and restricted mobility frequently affected daily activities. Patients experienced difficulty accomplishing their role in society; relationship problems, caring for children, employment and financial difficulties. Social isolation and lack of understanding were common. The psychological impact of this "life-changing and life-long" condition was profound. All patients requested knowledgeable healthcare professionals, more information, continuity of care and peer support. CONCLUSIONS: DF patients face complex physical, psychological and practical challenges. Comprehensive care services are needed. Increasing awareness may help to improve diagnostic pathways and overall patient experience. | |
dc.format | Print-Electronic | |
dc.format.extent | 965 - 980 | |
dc.language | eng | |
dc.language.iso | eng | |
dc.publisher | SPRINGER | |
dc.rights.uri | https://creativecommons.org/licenses/by-nc/4.0 | |
dc.subject | Humans | |
dc.subject | Fibromatosis, Aggressive | |
dc.subject | Pain | |
dc.subject | Fatigue | |
dc.subject | Focus Groups | |
dc.subject | Depression | |
dc.subject | Empathy | |
dc.subject | Decision Making | |
dc.subject | Quality of Life | |
dc.subject | Social Support | |
dc.subject | Adult | |
dc.subject | Aged | |
dc.subject | Middle Aged | |
dc.subject | Delivery of Health Care | |
dc.subject | Female | |
dc.subject | Male | |
dc.subject | Young Adult | |
dc.subject | Delayed Diagnosis | |
dc.title | Desmoid fibromatosis through the patients' eyes: time to change the focus and organisation of care? | |
dc.type | Journal Article | |
dcterms.dateAccepted | 2018-07-26 | |
rioxxterms.versionofrecord | 10.1007/s00520-018-4386-8 | |
rioxxterms.licenseref.uri | https://creativecommons.org/licenses/by-nc/4.0 | |
rioxxterms.licenseref.startdate | 2019-03 | |
rioxxterms.type | Journal Article/Review | |
dc.relation.isPartOf | Supportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer | |
pubs.issue | 3 | |
pubs.notes | No embargo | |
pubs.organisational-group | /ICR | |
pubs.organisational-group | /ICR/Primary Group | |
pubs.organisational-group | /ICR/Primary Group/ICR Divisions | |
pubs.organisational-group | /ICR/Primary Group/ICR Divisions/Cancer Biology | |
pubs.organisational-group | /ICR/Primary Group/ICR Divisions/Cancer Biology/Targeted Therapy | |
pubs.organisational-group | /ICR/Primary Group/ICR Divisions/Clinical Studies | |
pubs.organisational-group | /ICR/Primary Group/ICR Divisions/Clinical Studies/Clinical and Translational Sarcoma | |
pubs.organisational-group | /ICR/Primary Group/ICR Divisions/Clinical Studies/Sarcoma Clinical Trials (R Jones) | |
pubs.organisational-group | /ICR/Primary Group/ICR Divisions/Clinical Studies/Sarcoma Clinical Trials (R Jones)/Sarcoma Clinical Trials (R Jones) (hon.) | |
pubs.organisational-group | /ICR/Primary Group/ICR Divisions/Radiotherapy and Imaging | |
pubs.organisational-group | /ICR/Primary Group/ICR Divisions/Radiotherapy and Imaging/Sarcoma and Melanoma Surgery | |
pubs.organisational-group | /ICR/Primary Group/ICR Divisions/Radiotherapy and Imaging/Targeted Therapy | |
pubs.organisational-group | /ICR/Primary Group/Royal Marsden Clinical Units | |
pubs.organisational-group | /ICR | |
pubs.organisational-group | /ICR/Primary Group | |
pubs.organisational-group | /ICR/Primary Group/ICR Divisions | |
pubs.organisational-group | /ICR/Primary Group/ICR Divisions/Cancer Biology | |
pubs.organisational-group | /ICR/Primary Group/ICR Divisions/Cancer Biology/Targeted Therapy | |
pubs.organisational-group | /ICR/Primary Group/ICR Divisions/Clinical Studies | |
pubs.organisational-group | /ICR/Primary Group/ICR Divisions/Clinical Studies/Clinical and Translational Sarcoma | |
pubs.organisational-group | /ICR/Primary Group/ICR Divisions/Clinical Studies/Sarcoma Clinical Trials (R Jones) | |
pubs.organisational-group | /ICR/Primary Group/ICR Divisions/Clinical Studies/Sarcoma Clinical Trials (R Jones)/Sarcoma Clinical Trials (R Jones) (hon.) | |
pubs.organisational-group | /ICR/Primary Group/ICR Divisions/Radiotherapy and Imaging | |
pubs.organisational-group | /ICR/Primary Group/ICR Divisions/Radiotherapy and Imaging/Sarcoma and Melanoma Surgery | |
pubs.organisational-group | /ICR/Primary Group/ICR Divisions/Radiotherapy and Imaging/Targeted Therapy | |
pubs.organisational-group | /ICR/Primary Group/Royal Marsden Clinical Units | |
pubs.publication-status | Published | |
pubs.volume | 27 | |
pubs.embargo.terms | No embargo | |
icr.researchteam | Clinical and Translational Sarcoma | |
icr.researchteam | Sarcoma Clinical Trials (R Jones) | |
icr.researchteam | Sarcoma and Melanoma Surgery | |
icr.researchteam | Targeted Therapy | |
dc.contributor.icrauthor | Husson, Olga | |
dc.contributor.icrauthor | Smith, Myles | |