Assessing the Desmoid-Type Fibromatosis Patients' Voice: Comparison of Health-Related Quality of Life Experiences from Patients of Two Countries.

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  • Additional Information
    • Affiliation:
      Department of Surgical Oncology, Erasmus MC Cancer Institute, Rotterdam, Netherlands
      Department of Medical Oncology, Erasmus MC Cancer Institute, Rotterdam, Netherlands
      Department of Medical Oncology, The Netherlands Cancer Institute, Amsterdam, Netherlands
      Department of Medical Oncology, Radboud University Medical Centre, Nijmegen, Netherlands
      Sarcoma Unit, Royal Marsden NHS Foundation Trust, London, UK
      Division of Clinical Studies, Institute of Cancer Research, Royal Marsden NHS Foundation Trust, London, UK
      Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Amsterdam, Netherlands
      Department of Medical and Clinical Psychology, Tilburg University, Netherlands
      Department of Research, Netherlands Comprehensive Cancer Organisation (IKNL), Eindhoven, Netherlands
    • Subject Terms:
    • Subject Terms:
    • Abstract:
      Purpose. Desmoid-type fibromatosis (DTF) is a rare, nonmetastasising soft tissue tumour. Symptoms, unpredictable growth, lack of definitive treatments, and the chronic character of the disease can significantly impact health-related quality of life (HRQoL). We aimed at identifying the most important HRQoL issues according to DTF patients in two countries, in order to devise a specific HRQoL questionnaire for this patient group. Methods. DTF patients and healthcare providers (HCPs) from the Netherlands and the United Kingdom individually ranked 124 issues regarding diagnosis, treatment, follow-up, recurrence, living with DTF, healthcare, and supportive care experiences, according to their relevance. Descriptive statistics were used to calculate priority scores. Results. The most highly ranked issues by patients (n = 29) were issues concerning "tumour growth," "feeling that there is something in the body that does not belong there," and "fear of tumour growth into adjacent tissues or organs" with mean (M) scores of 3.0, 2.9, and 2.8, respectively (Likert scale 1–4). British patients scored higher on most issues compared to Dutch patients (M 2.2 vs. M 1.5). HCPs (n = 31) gave higher scores on most issues compared to patients (M 2.3 vs. M 1.8). Conclusion. This study identified the most relevant issues for DTF patients, which should be included in a DTF-specific HRQoL questionnaire. Additionally, we identified differences in priority scores between British and Dutch participating patients. Field testing in a large, international cohort is needed to confirm these findings and to devise a comprehensive and specific HRQoL questionnaire for DTF patients.
    • Journal Subset:
      Biomedical; Europe; Peer Reviewed; UK & Ireland
    • Instrumentation:
      Health-Related Quality of Life (HRQOL)
    • ISSN:
      1357-714X
    • MEDLINE Info:
      NLM UID: 9709257
    • Publication Date:
      20200805
    • Publication Date:
      20200805
    • DOI:
      10.1155/2020/2141939
    • Accession Number:
      144773577
  • Citations
    • ABNT:
      TIMBERGEN, M. J. M. et al. Assessing the Desmoid-Type Fibromatosis Patients’ Voice: Comparison of Health-Related Quality of Life Experiences from Patients of Two Countries. Sarcoma, [s. l.], p. 1–9, 2020. DOI 10.1155/2020/2141939. Disponível em: http://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=rzh&AN=144773577. Acesso em: 27 out. 2020.
    • AMA:
      Timbergen MJM, van der Graaf WTA, Grünhagen DJ, et al. Assessing the Desmoid-Type Fibromatosis Patients’ Voice: Comparison of Health-Related Quality of Life Experiences from Patients of Two Countries. Sarcoma. July 2020:1-9. doi:10.1155/2020/2141939
    • APA:
      Timbergen, M. J. M., van der Graaf, W. T. A., Grünhagen, D. J., Younger, E., Sleijfer, S., Dunlop, A., Dean, L., Verhoef, C., van de Poll-Franse, L. V., & Husson, O. (2020). Assessing the Desmoid-Type Fibromatosis Patients’ Voice: Comparison of Health-Related Quality of Life Experiences from Patients of Two Countries. Sarcoma, 1–9. https://doi.org/10.1155/2020/2141939
    • Chicago/Turabian: Author-Date:
      Timbergen, Milea J. M., Winette T. A. van der Graaf, Dirk J. Grünhagen, Eugenie Younger, Stefan Sleijfer, Alison Dunlop, Lucy Dean, Cornelis Verhoef, Lonneke V. van de Poll-Franse, and Olga Husson. 2020. “Assessing the Desmoid-Type Fibromatosis Patients’ Voice: Comparison of Health-Related Quality of Life Experiences from Patients of Two Countries.” Sarcoma, July, 1–9. doi:10.1155/2020/2141939.
    • Harvard:
      Timbergen, M. J. M. et al. (2020) ‘Assessing the Desmoid-Type Fibromatosis Patients’ Voice: Comparison of Health-Related Quality of Life Experiences from Patients of Two Countries’, Sarcoma, pp. 1–9. doi: 10.1155/2020/2141939.
    • Harvard: Australian:
      Timbergen, MJM, van der Graaf, WTA, Grünhagen, DJ, Younger, E, Sleijfer, S, Dunlop, A, Dean, L, Verhoef, C, van de Poll-Franse, LV & Husson, O 2020, ‘Assessing the Desmoid-Type Fibromatosis Patients’ Voice: Comparison of Health-Related Quality of Life Experiences from Patients of Two Countries’, Sarcoma, pp. 1–9, viewed 27 October 2020, .
    • MLA:
      Timbergen, Milea J. M., et al. “Assessing the Desmoid-Type Fibromatosis Patients’ Voice: Comparison of Health-Related Quality of Life Experiences from Patients of Two Countries.” Sarcoma, July 2020, pp. 1–9. EBSCOhost, doi:10.1155/2020/2141939.
    • Chicago/Turabian: Humanities:
      Timbergen, Milea J. M., Winette T. A. van der Graaf, Dirk J. Grünhagen, Eugenie Younger, Stefan Sleijfer, Alison Dunlop, Lucy Dean, Cornelis Verhoef, Lonneke V. van de Poll-Franse, and Olga Husson. “Assessing the Desmoid-Type Fibromatosis Patients’ Voice: Comparison of Health-Related Quality of Life Experiences from Patients of Two Countries.” Sarcoma, July 26, 2020, 1–9. doi:10.1155/2020/2141939.
    • Vancouver/ICMJE:
      Timbergen MJM, van der Graaf WTA, Grünhagen DJ, Younger E, Sleijfer S, Dunlop A, et al. Assessing the Desmoid-Type Fibromatosis Patients’ Voice: Comparison of Health-Related Quality of Life Experiences from Patients of Two Countries. Sarcoma [Internet]. 2020 Jul 26 [cited 2020 Oct 27];1–9. Available from: http://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=rzh&AN=144773577