Assessing the Desmoid-Type Fibromatosis Patients’ Voice: Comparison of Health-Related Quality of Life Experiences from Patients of Two Countries
Joint Authors
Sleijfer, S.
Timbergen, Milea J. M.
van der Graaf, Winette T. A.
Grünhagen, Dirk J.
Younger, Eugenie
Dunlop, Alison
Dean, Lucy
van de Poll-Franse, Lonneke V.
Husson, Olga
Verhoef, Kees
Source
Issue
Vol. 2020, Issue 2020 (31 Dec. 2020), pp.1-9, 9 p.
Publisher
Hindawi Publishing Corporation
Publication Date
2020-07-26
Country of Publication
Egypt
No. of Pages
9
Main Subjects
Abstract EN
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.
American Psychological Association (APA)
Timbergen, Milea J. M.& van der Graaf, Winette T. A.& Grünhagen, Dirk J.& Younger, Eugenie& Sleijfer, S.& Dunlop, Alison…[et al.]. 2020. Assessing the Desmoid-Type Fibromatosis Patients’ Voice: Comparison of Health-Related Quality of Life Experiences from Patients of Two Countries. Complexity،Vol. 2020, no. 2020, pp.1-9.
https://search.emarefa.net/detail/BIM-1207272
Modern Language Association (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. Complexity No. 2020 (2020), pp.1-9.
https://search.emarefa.net/detail/BIM-1207272
American Medical Association (AMA)
Timbergen, Milea J. M.& van der Graaf, Winette T. A.& Grünhagen, Dirk J.& Younger, Eugenie& Sleijfer, S.& Dunlop, Alison…[et al.]. Assessing the Desmoid-Type Fibromatosis Patients’ Voice: Comparison of Health-Related Quality of Life Experiences from Patients of Two Countries. Complexity. 2020. Vol. 2020, no. 2020, pp.1-9.
https://search.emarefa.net/detail/BIM-1207272
Data Type
Journal Articles
Language
English
Notes
Includes bibliographical references
Record ID
BIM-1207272