TY - JOUR
T1 - Assessing the Desmoid-Type Fibromatosis Patients' Voice
T2 - Comparison of Health-Related Quality of Life Experiences from Patients of Two Countries
AU - Timbergen, Milea J.M.
AU - Van Der Graaf, Winette T.A.
AU - Grunhagen, Dirk J.
AU - Younger, Eugenie
AU - Sleijfer, Stefan
AU - Dunlop, Alison
AU - Dean, Lucy
AU - Verhoef, Cornelis
AU - Van De Poll-Franse, Lonneke V.
AU - Husson, Olga
N1 - Copyright © 2020 Milea J. M. Timbergen et al.
PY - 2020/7/26
Y1 - 2020/7/26
N2 - 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.
AB - 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.
UR - http://www.scopus.com/inward/record.url?scp=85089746698&partnerID=8YFLogxK
U2 - 10.1155/2020/2141939
DO - 10.1155/2020/2141939
M3 - Article
C2 - 32774131
AN - SCOPUS:85089746698
SN - 1357-714X
VL - 2020
JO - Sarcoma
JF - Sarcoma
M1 - 2141939
ER -