dc.contributor.author | Schut, A-RW | |
dc.contributor.author | Timbergen, MJM | |
dc.contributor.author | Lidington, E | |
dc.contributor.author | Grünhagen, DJ | |
dc.contributor.author | van der Graaf, WTA | |
dc.contributor.author | Sleijfer, S | |
dc.contributor.author | van Houdt, WJ | |
dc.contributor.author | Bonenkamp, JJ | |
dc.contributor.author | Younger, E | |
dc.contributor.author | Dunlop, A | |
dc.contributor.author | Jones, RL | |
dc.contributor.author | Verhoef, C | |
dc.contributor.author | Gennatas, S | |
dc.contributor.author | Husson, O | |
dc.date.accessioned | 2021-09-16T11:29:08Z | |
dc.date.available | 2021-09-16T11:29:08Z | |
dc.date.issued | 2021-06-22 | |
dc.identifier.citation | Cancers, 2021, 13 (13) | |
dc.identifier.issn | 2072-6694 | |
dc.identifier.uri | https://repository.icr.ac.uk/handle/internal/4812 | |
dc.identifier.eissn | 2072-6694 | |
dc.identifier.doi | 10.3390/cancers13133068 | |
dc.description.abstract | Sporadic desmoid-type fibromatosis (DTF) is a rare soft tissue tumour with an unpredictable clinical course. These tumours are incapable of metastasising, but their local aggressive tumour growth and tendency to recur locally can result in a substantial symptom burden. Measuring the impact of DTF on health-related quality of life (HRQoL) can be challenging due to the variable clinical presentation of the disease. Therefore, a HRQoL instrument assessing DTF-specific issues is needed. The QUALIFIED study aims to (1) pre-test a previously developed DTF-specific HRQoL tool (the DTF-QoL); (2) evaluate prevalence of HRQoL issues in adult DTF patients; and (3) identify subgroups at risk of impaired HRQoL. This study (NCT04289077) is an international, multicentre, cross-sectional, observational cohort study. Patients ≥ 18 years with sporadic DTF from the Netherlands and the United Kingdom will be invited to complete a set of questionnaires specifically composed for this patient group. Questionnaires will be completed using PROFILES (Patient Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship). Analyses will include testing the psychometric properties of the DTF-QoL and evaluating the prevalence of HRQoL issues using the DTF-QoL, EORTC QOL-C30 and EQ-5D-5L, among other questionnaires. This study will provide insight into HRQoL issues experienced by patients with DTF. Awareness of these issues and the implementation of the DTF-QoL in research and clinical practice can help to improve overall HRQoL and to provide personalised care. | |
dc.format | Electronic | |
dc.language | eng | |
dc.language.iso | eng | |
dc.publisher | MDPI | |
dc.rights.uri | https://creativecommons.org/licenses/by/4.0 | |
dc.title | The Evaluation of Health-Related Quality of Life Issues Experienced by Patients with Desmoid-Type Fibromatosis (The QUALIFIED Study)-A Protocol for an International Cohort Study. | |
dc.type | Journal Article | |
dcterms.dateAccepted | 2021-06-18 | |
rioxxterms.version | VoR | |
rioxxterms.versionofrecord | 10.3390/cancers13133068 | |
rioxxterms.licenseref.uri | https://creativecommons.org/licenses/by/4.0 | |
rioxxterms.licenseref.startdate | 2021-06-22 | |
rioxxterms.type | Journal Article/Review | |
dc.relation.isPartOf | Cancers | |
pubs.issue | 13 | |
pubs.notes | Not known | |
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/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/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/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/Royal Marsden Clinical Units | |
pubs.publication-status | Published | |
pubs.volume | 13 | |
pubs.embargo.terms | Not known | |
icr.researchteam | Clinical and Translational Sarcoma | |
icr.researchteam | Sarcoma Clinical Trials (R Jones) | |
icr.researchteam | Clinical and Translational Sarcoma | |
icr.researchteam | Sarcoma Clinical Trials (R Jones) | |
dc.contributor.icrauthor | Husson, Olga | |