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
Abstract
:Simple Summary
Abstract
1. Introduction
2. Methods and Analysis
2.1. Study Design and Setting
2.2. Patient and Public Involvement
2.3. Eligibility Criteria
2.4. Data Collection
2.5. Recruitment
2.6. Case Report Forms
2.7. Questionnaires
2.7.1. Sociodemographic and Clinical Characteristics
2.7.2. Healthcare Utilisation
2.7.3. Decision Making
2.7.4. EORTC QLQ-C30
2.7.5. DTF-QoL
2.7.6. EQ-5D-5L
2.8. Objectives
2.9. Sample Size
2.10. Statistical Analysis
2.11. Missing Data
3. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
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Inclusion Criteria | Exclusion Criteria |
---|---|
Patients aged ≥ 18 years | Patients diagnosed with FAP-related DTF |
Patients with histopathological proven DTF, regardless of disease phase or treatment. | |
Patients diagnosed between January 1990 and July 2020, with a visit to the hospital for their DTF (between October 2014 and July 2020) | |
Patients with sufficient Dutch/English language skills | |
Patients competent to complete a questionnaire | |
Patients with written informed consent |
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Schut, A.-R.W.; Timbergen, M.J.M.; Lidington, E.; Grünhagen, D.J.; van der Graaf, W.T.A.; Sleijfer, S.; van Houdt, W.J.; Bonenkamp, J.J.; Younger, E.; Dunlop, A.; et al. 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. Cancers 2021, 13, 3068. https://doi.org/10.3390/cancers13133068
Schut A-RW, Timbergen MJM, Lidington E, Grünhagen DJ, van der Graaf WTA, Sleijfer S, van Houdt WJ, Bonenkamp JJ, Younger E, Dunlop A, et al. 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. Cancers. 2021; 13(13):3068. https://doi.org/10.3390/cancers13133068
Chicago/Turabian StyleSchut, Anne-Rose W., Milea J. M. Timbergen, Emma Lidington, Dirk J. Grünhagen, Winette T. A. van der Graaf, Stefan Sleijfer, Winan J. van Houdt, Johannes J. Bonenkamp, Eugenie Younger, Alison Dunlop, and et al. 2021. "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" Cancers 13, no. 13: 3068. https://doi.org/10.3390/cancers13133068