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dc.contributor.authorHusson, O
dc.contributor.authorYounger, E
dc.contributor.authorDunlop, A
dc.contributor.authorDean, L
dc.contributor.authorStrauss, DC
dc.contributor.authorBenson, C
dc.contributor.authorHayes, AJ
dc.contributor.authorMiah, A
dc.contributor.authorvan Houdt, W
dc.contributor.authorZaidi, S
dc.contributor.authorSmith, M
dc.contributor.authorWilliams, J
dc.contributor.authorJones, RL
dc.contributor.authorvan der Graaf, WTA
dc.date.accessioned2018-07-27T10:24:11Z
dc.date.issued2019-03
dc.identifier.citationSupportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer, 2019, 27 (3), pp. 965 - 980
dc.identifier.issn0941-4355
dc.identifier.urihttps://repository.icr.ac.uk/handle/internal/2191
dc.identifier.eissn1433-7339
dc.identifier.doi10.1007/s00520-018-4386-8
dc.description.abstractPurpose 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.formatPrint-Electronic
dc.format.extent965 - 980
dc.languageeng
dc.language.isoeng
dc.rights.urihttps://creativecommons.org/licenses/by-nc/4.0
dc.subjectHumans
dc.subjectFibromatosis, Aggressive
dc.subjectPain
dc.subjectFatigue
dc.subjectFocus Groups
dc.subjectDepression
dc.subjectEmpathy
dc.subjectDecision Making
dc.subjectQuality of Life
dc.subjectSocial Support
dc.subjectAdult
dc.subjectAged
dc.subjectMiddle Aged
dc.subjectDelivery of Health Care
dc.subjectFemale
dc.subjectMale
dc.subjectYoung Adult
dc.subjectDelayed Diagnosis
dc.titleDesmoid fibromatosis through the patients' eyes: time to change the focus and organisation of care?
dc.typeJournal Article
dcterms.dateAccepted2018-07-26
rioxxterms.versionofrecord10.1007/s00520-018-4386-8
rioxxterms.licenseref.urihttps://creativecommons.org/licenses/by-nc/4.0
rioxxterms.licenseref.startdate2019-03
rioxxterms.typeJournal Article/Review
dc.relation.isPartOfSupportive care in cancer : official journal of the Multinational Association of Supportive Care in Cancer
pubs.issue3
pubs.notesNo 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-statusPublished
pubs.volume27
pubs.embargo.termsNo embargo
icr.researchteamClinical and Translational Sarcomaen_US
icr.researchteamSarcoma Clinical Trials (R Jones)en_US
icr.researchteamSarcoma and Melanoma Surgeryen_US
icr.researchteamTargeted Therapyen_US
dc.contributor.icrauthorSmith, Mylesen
dc.contributor.icrauthorHusson, Olgaen
dc.contributor.icrauthorZaidi, Shane Haideren
dc.contributor.icrauthorJones, Robinen
dc.contributor.icrauthorvan der Graaf, Wilhelminaen
dc.contributor.icrauthorHayes, Andrewen


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