Assessing the Desmoid-Type Fibromatosis Patients' Voice: Comparison of Health-Related Quality of Life Experiences from Patients of Two Countries.
Journal
Sarcoma
ISSN: 1357-714X
Titre abrégé: Sarcoma
Pays: Egypt
ID NLM: 9709257
Informations de publication
Date de publication:
2020
2020
Historique:
received:
04
05
2020
revised:
27
06
2020
accepted:
29
06
2020
entrez:
11
8
2020
pubmed:
11
8
2020
medline:
11
8
2020
Statut:
epublish
Résumé
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. 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. The most highly ranked issues by patients ( 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.
Identifiants
pubmed: 32774131
doi: 10.1155/2020/2141939
pmc: PMC7399762
doi:
Types de publication
Journal Article
Langues
eng
Pagination
2141939Informations de copyright
Copyright © 2020 Milea J. M. Timbergen et al.
Déclaration de conflit d'intérêts
The authors declare that they have no conflicts of interest.
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