Unraveling Desmoid-Type Fibromatosis-Specific Health-Related Quality of Life: Who Is at Risk for Poor Outcomes
Abstract
:Simple Summary
Abstract
1. Introduction
2. Materials and Methods
2.1. Study Sample and Data Collection
2.2. Study Measures
2.2.1. Socio-Demographic and Clinical Characteristics
2.2.2. Questionnaires
2.3. Statistical Analyses
3. Results
3.1. Patient Characteristics
3.2. Comparison of DTF-Specific HRQoL between Different Groups of DTF Patients
3.3. Comparison of HRQoL between Different Groups of DTF Patients
3.4. Factors Associated with DTF-Specific HRQoL
4. Discussion
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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n (%) | ||
Nationality | United Kingdom | 79 (33.6) |
The Netherlands | 156 (66.4) | |
Sex | Male | 62 (26.4) |
Female | 173 (73.6) | |
Age in years at time of diagnosis (in years)—Mean (SD) | 41.7 (14.4) | |
Age in years at time of questionnaire (in years)—Mean (SD) | 47.2 (14.0) | |
Time since diagnosis (in years)—Mean (SD) | 5.7 (4.5) | |
Tumour localization | Head/neck | 13 (5.5) |
Upper extremity/shoulder | 29 (12.3) | |
Trunk 1 | 54 (23.0) | |
Abdominal wall | 58 (24.7) | |
Intra-abdominal | 39 (16.6) | |
Hip/pelvis/gluteal region | 20 (8.5) | |
Lower extremity | 22 (9.4) | |
Recurrent disease after surgery (n = 98, 41.7%) | Yes | 41 (41.8) |
No | 57 (58.2) | |
Treatment received 2 | Only active surveillance | 87 (37.0) |
Only surgery | 64 (27.2) | |
Only systemic therapy | 32 (13.6) | |
Only local therapy | 8 (3.4) | |
Combination of active treatments | 44 (18.7) | |
Comorbidity (self-report) | None | 90 (38.3) |
1 | 74 (31.5) | |
≥2 | 71 (30.2) | |
Relationship status | Partnered | 181 (77.0) |
Not partnered | 53 (22.6) | |
Missing | 1 (0.4) | |
Education level | Low (primary/secondary) | 36 (15.3) |
Medium (vocation/college/diploma) | 126 (53.6) | |
High (university/post-graduate) | 73 (31.1) | |
Current employment status | Working | 155 (66.0) |
Not working | 80 (33.9) |
DTF-QoL | ||||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Symptom Scales + | Impact Scales + | |||||||||||||
W1 Emotional | W2 Physical | W3 Pain | 1 Concerns Condition | 2 Job & Education | 3 Doctor-Patient | 4 Relation-ships | 5 Physical Consequences | 6 Diagnostic | 7 Parenting | 8 Body Image | 9 Support | 10 Treatment Concerns | 11 Behaviour DTF | |
Study population | 15.3 (18.7) | 11.6 (16.5) | 19.6 (25.6) | 41.3 (24.1) | 29.2 (31.6) | 26.7 (19.7) | 24.8 (21.8) | 18.7 (18.9) | 28.1 (19.1) | 21.1 (23.1) | 29.0 (25.9) | 36.0 (14.1) | 22.1 (21.4) | 38.8 (22.4) |
Age (years) | ||||||||||||||
18–39 | 16.1 (19.8) | 10.9 (16.4) | 22.0 (28.5) | 44.6 (24.4) | 31.8 (31.9) | 27.8 (20.7) | 28.3 (22.4) | 20.8 (19.6) | 29.6 (20.0) | 28.2 (25.4) | 33.2 (26.8) | 36.3 (14.6) | 25.9 (23.2) | 42.5 (23.9) |
≥40 | 14.6 (17.5) | 12.2 (16.7) | 17.1 (22.1) | 38.0 (23.5) | 25.6 (30.9) | 25.7 (18.6) | 21.3 (20.7) | 16.7 (18.1) | 26.5 (18.2) | 8.6 (10.1) | 24.8 (24.5) | 35.7 (13.7) | 18.2 (18.8) | 35.0 (20.3) |
p-value | 0.905 | 0.159 | 0.344 | 0.024 | 0.088 | 0.518 | 0.004 | 0.124 | 0.229 | <0.001 | 0.007 | 0.943 | 0.019 | 0.032 |
Sex | ||||||||||||||
Male | 12.4 (15.2) | 7.5 (11.5) | 15.1 (22.6) | 39.3 (24.3) | 25.4 (28.9) | 22.8 (16.3) | 20.5 (21.5) | 14.0 (15.1) | 25.3 (18.1) | 8.7 (13.3) | 21.5 (19.7) | 34.5 (13.2) | 22.4 (19.1) | 37.9 (21.9) |
Female | 16.4 (19.7) | 13.1 (17.8) | 21.2 (26.4) | 42.0 (24.1) | 30.7 (32.5) | 28.1 (20.6) | 26.4 (21.8) | 20.5 (19.9) | 29.0 (19.4) | 25.6 (24.3) | 31.7 (27.4) | 36.5 (14.4) | 21.9 (22.2) | 39.2 (22.7) |
p-value | 0.264 | 0.055 | 0.097 | 0.443 | 0.476 | 0.099 | 0.013 | 0.044 | 0.158 | <0.001 | 0.017 | 0.271 | 0.502 | 0.719 |
Relationship status | ||||||||||||||
Partnered | 14.0 (18.3) | 10.6 (15.4) | 19.2 (24.9) | 41.0 (24.5) | 27.2 (30.6) | 26.8 (19.6) | 23.2 (21.1) | 17.0 (18.0) | 28.0 (19.3) | 22.1 (23.4) | 26.7 (24.9) | 35.9 (14.4) | 21.5 (21.5) | 38.7 (22.6) |
Not partnered | 20.0 (19.2) | 15.2 (19.6) | 21.0 (28.0) | 42.0 (23.2) | 36.5 (34.8) | 26.8 (20.1) | 30.2 (23.9) | 24.5 (21.3) | 27.7 (18.4) | 15.2 (20.6) | 37.6 (27.8) | 36.1 (13.2) | 23.7 (21.3) | 39.4 (22.4) |
p-value | 0.017 | 0.122 | 0.779 | 0.755 | 0.095 | 0.914 | 0.050 | 0.020 | 0.999 | 0.185 | 0.005 | 0.551 | 0.430 | 0.837 |
Education level | ||||||||||||||
Low | 16.1 (17.1) | 14.3 (21.0) | 18.5 (23.8) | 34.8 (22.5) | 21.1 (28.4) | 25.7 (20.8) | 21.2 (19.2) | 16.1 (17.6) | 23.5 (16.8) | 15.3 (22.7) | 28.8 (25.2) | 33.3 (13.5) | 16.9 (16.4) | 36.4 (21.9) |
Medium | 16.0 (19.6) | 11.4 (15.7) | 19.5 (25.5) | 43.3 (23.7) | 35.2 (33.3) | 27.1 (18.8) | 25.2 (21.6) | 20.8 (19.3) | 29.5 (19.7) | 19.5 (22.1) | 27.8 (25.2) | 35.1 (12.4) | 21.7 (20.2) | 39.3 (22.3) |
High | 13.8 (17.9) | 10.7 (15.5) | 20.1 (26.8) | 41.0 (25.3) | 21.7 (27.7) | 26.6 (20.8) | 25.8 (23.5) | 16.5 (18.8) | 27.9 (19.1) | 25.0 (24.6) | 31.3 (27.7) | 38.8 (16.7) | 25.2 (25.2) | 39.3 (23.1) |
p-value # | 0.712 | 0.554 | 0.956 | 0.181 | 0.011 a | 0.928 | 0.548 | 0.212 | 0.259 | 0.369 | 0.657 | 0.097 | 0.192 | 0.781 |
Employment status | ||||||||||||||
Working | 13.6 (17.4) | 9.5 (15.1) | 18.4 (24.8) | 41.5 (24.1) | 22.9 (25.9) | 26.7 (20.2) | 23.4 (19.9) | 16.3 (16.9) | 28.5 (19.1) | 20.2 (23.7) | 28.0 (24.9) | 36.0 (14.9) | 19.8 (19.9) | 37.6 (21.7) |
Not working | 18.6 (20.5) | 15.6 (18.4) | 21.9 (27.0) | 40.7 (24.2) | 50.5 (39.4) | 26.8 (18.8) | 27.6 (25.0) | 23.5 (21.7) | 27.1 (19.3) | 24.3 (20.8) | 31.0 (27.9) | 36.0 (14.9) | 26.5 (23.6) | 41.3 (23.9) |
p-value | 0.053 | 0.002 | 0.307 | 0.752 | <0.001 | 0.876 | 0.488 | 0.017 | 0.597 | 0.210 | 0.529 | 0.331 | 0.063 | 0.298 |
Comorbidity | ||||||||||||||
None | 11.3 (15.8) | 8.9 (14.7) | 16.2 (23.7) | 37.3 (22.0) | 24.9 (29.4) | 23.3 (21.4) | 18.6 (18.7) | 14.7 (17.3) | 27.4 (21.4) | 17.7 (21.1) | 24.7 (23.2) | 33.5 (13.1) | 19.8 (19.7) | 34.0 (20.7) |
1 | 16.9 (19.6) | 9.9 (14.6) | 17.8 (26.4) | 41.5 (25.0) | 26.1 (30.4) | 26.2 (16.8) | 26.5 (21.6) | 17.5 (17.3) | 26.1 (17.7) | 21.5 (25.1) | 29.4 (27.6) | 36.5 (12.1) | 19.7 (21.7) | 37.5 (22.3) |
≥2 | 18.7 (20.2) | 16.8 (19.3) | 25.6 (26.3) | 46.1 (25.2) | 38.8 (34.3) | 31.6 (19.4) | 31.0 (23.9) | 25.1 (20.9) | 30.9 (17.4) | 26.4 (24.7) | 34.1 (26.9) | 38.7 (16.7) | 27.6 (22.6) | 46.3 (23.0) |
p-value # | 0.028 b | 0.005 b,c | 0.050 | 0.074 | 0.026 b | 0.027 b | 0.001 b | 0.002 b,c | 0.295 | 0.271 | 0.074 | 0.067 | 0.048 * | 0.002 b |
Time since diagnosis | ||||||||||||||
<5 years | 14.2 (17.2) | 9.5 (14.3) | 20.5 (26.3) | 38.8 (24.3) | 25.8 (30.5) | 24.1 (19.0) | 22.2 (21.2) | 16.7 (17.1) | 27.9 (18.2) | 14.4 (18.2) | 24.4 (23.6) | 33.6 (13.1) | 18.7 (18.5) | 37.1 (23.2) |
≥5 years | 16.6 (20.2) | 14.2 (18.6) | 18.3 (24.7) | 44.3 (23.6) | 33.1 (32.4) | 30.0 (20.1) | 28.1 (22.3) | 21.2 (20.8) | 28.3 (20.2) | 26.1 (25.1) | 34.7 (27.6) | 38.9 (14.8) | 25.8 (23.7) | 40.9 (21.4) |
p-value | 0.670 | 0.041 | 0.488 | 0.057 | 0.040 | 0.016 | 0.021 | 0.163 | 0.892 | 0.013 | 0.003 | 0.002 | 0.043 | 0.102 |
Treatment received 1 | ||||||||||||||
Only active surveillance | 9.1 (14.0) | 6.5 (10.9) | 13.9 (21.4) | 31.1 (18.1) | 10.3 (16.8) | 25.7 (16.7) | 15.7 (15.7) | 8.8 (11.6) | 23.5 (15.4) | 17.4 (23.0) | 15.6 (15.6) | 34.0 (11.3) | 10.3 (14.5) | 29.2 (18.6) |
Only surgery | 12.9 (16.7) | 11.1 (18.5) | 15.0 (22.8) | 37.2 (25.3) | 28.5 (28.4) | 29.0 (26.3) | 22.9 (19.8) | 18.6 (18.1) | 27.0 (20.7) | 12.0 (19.4) | 28.3 (24.5) | 39.1 (14.5) | 22.2 (19.9) | 34.7 (21.3) |
Other treatment | 23.5 (21.4) | 17.2 (18.0) | 28.8 (28.9) | 55.0 (22.5) | 49.2 (33.4) | 26.1 (16.4) | 35.8 (24.1) | 29.3 (20.2) | 33.6 (20.2) | 32.6 (21.8) | 43.4 (28.1) | 35.7 (16.1) | 32.8 (22.3) | 51.9 (20.8) |
p-value # | <0.001 d,e | <0.001 d | <0.001 d,e | <0.001 d,e | <0.001 d,e,f | 0.563 | <0.001 d,e | <0.001 d,e,f | 0.002 d | <0.001 d,e | <0.001 d,e,f | 0.081 | <0.001 d,e,f | <0.001 d,e |
Recurrent disease | ||||||||||||||
Yes | 18.7 (20.2) | 16.7 (20.6) | 20.9 (25.5) | 52.7 (22.9) | 44.0 (32.7) | 27.6 (18.2) | 29.3 (23.2) | 26.0 (20.9) | 29.7 (21.4) | 28.7 (26.4) | 39.1 (28.1) | 36.3 (16.1) | 34.1 (21.4) | 49.3 (21.7) |
No | 14.6 (18.3) | 10.5 (15.3) | 19.3 (25.6) | 38.8 (23.7) | 25.9 (30.5) | 26.6 (20.0) | 23.9 (21.4) | 17.2 (18.2) | 27.7 (18.7) | 19.5 (22.2) | 26.9 (25.0) | 35.9 (13.7) | 19.3 (20.5) | 36.6 (22.0) |
p-value | 0.114 | 0.068 | 0.645 | 0.001 | 0.001 | 0.623 | 0.098 | 0.005 | 0.671 | 0.091 | 0.006 | 0.671 | <0.001 | 0.001 |
Recurrent disease after surgery (n = 98) | ||||||||||||||
Yes | 18.7 (20.2) | 16.7 (20.6) | 20.9 (25.5) | 52.7 (22.9) | 44.0 (32.7) | 27.6 (18.2) | 29.3 (23.2) | 26.0 (20.9) | 29.7 (21.4) | 28.7 (26.4) | 39.1 (28.1) | 36.3 (16.1) | 34.1 (21.4) | 49.3 (21.7) |
No | 11.9 (15.8) | 9.6 (14.8) | 13.4 (21.3) | 35.6 (24.8) | 32.1 (29.5) | 29.8 (26.4) | 23.2 (20.2) | 19.5 (17.7) | 28.7 (20.7) | 12.6 (15.7) | 32.0 (27.6) | 39.7 (15.2) | 18.4 (18.1) | 32.9 (19.0) |
p-value | 0.040 | 0.063 | 0.162 | 0.001 | 0.078 | 0.971 | 0.150 | 0.132 | 0.820 | 0.018 | 0.190 | 0.362 | <0.001 | <0.001 |
Tumour location | ||||||||||||||
Abdominal wall | 14.4 (17.2) | 8.8 (17.4) | 15.2 (24.1) | 35.0 (23.8) | 19.9 (28.0) | 27.2 (20.2) | 24.2 (23.5) | 16.2 (20.9) | 27.3 (19.3) | 18.2 (20.9) | 25.0 (26.1) | 35.2 (12.0) | 17.1 (20.8) | 34.0 (23.6) |
Intra-abdominal | 11.8 (19.0) | 8.0 (16.0) | 8.0 (16.5) | 41.7 (26.1) | 28.0 (26.5) | 24.2 (18.4) | 20.7 (19.6) | 16.6 (16.0) | 23.7 (16.9) | 13.5 (18.7) | 16.5 (18.8) | 37.9 (11.9) | 15.4 (16.4) | 34.5 (22.9) |
Upper extremity | 19.1 (17.6) | 9.9 (10.9) | 31.4 (25.0) | 42.7 (23.1) | 29.5 (32.6) | 25.1 (13.3) | 26.0 (23.1) | 16.8 (18.3) | 28.7 (20.0) | 16.1 (14.4) | 34.4 (24.5) | 37.5 (17.2) | 33.8 (23.0) | 43.3 (22.0) |
Lower extremity | 17.8 (20.8) | 25.8 (21.3) | 21.2 (22.7) | 42.0 (21.1) | 43.5 (37.0) | 24.0 (18.5) | 30.0 (18.8) | 29.3 (21.6) | 31.8 (17.2) | 31.2 (30.4) | 40.3 (25.6) | 40.2 (11.4) | 37.8 (23.6) | 45.7 (20.9) |
Head/neck | 18.9 (23.8) | 11.3 (14.8) | 22.2 (36.3) | 46.2 (25.5) | 60.0 (32.5) | 26.9 (21.7) | 27.6 (24.8) | 25.0 (20.0) | 31.9 (23.9) | 35.6 (36.7) | 37.8 (32.9) | 29.1 (10.7) | 20.4 (16.5) | 42.7 (21.7) |
Trunk | 13.8 (17.7) | 8.8 (11.4) | 17.7 (22.2) | 40.1 (23.4) | 21.4 (29.3) | 28.5 (22.7) | 23.1 (20.8) | 15.0 (15.3) | 29.6 (20.6) | 22.3 (28.5) | 29.6 (26.7) | 35.4 (17.1) | 17.9 (18.7) | 38.1 (21.0) |
Hip/pelvis/gluteal region | 18.3 (20.6) | 21.3 (18.4) | 38.9 (33.3) | 55.8 (23.1) | 40.4 (29.7) | 30.8 (21.2) | 30.2 (23.5) | 27.2 (19.7) | 26.9 (16.9) | 35.4 (21.2) | 37.5 (23.8) | 33.9 (14.2) | 25.6 (22.2) | 47.1 (22.2) |
p-value # | 0.613 | <0.001 g,h,i,j,k,l | <0.001 h,j,m,n | 0.062 | 0.001 o,p | 0.862 | 0.607 | 0.012 * | 0.687 | 0.153 | 0.003 i | 0.341 | <0.001 g,i,l,m,q,r | 0.109 |
EORTC QLQ-C30 | |||||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Functional Scales ++ | Symptom Scales/Items + | ||||||||||||||
PF | RF | EF | CF | SF | Global QoL | Fatigue | Nausea | Pain | Dysp- Noea | Sleep | Appetite Loss | Constipation | Diarrhoea | FD | |
Study population | 86.1 (18.6) | 82.1 (27.0) | 79.3 (21.3) | 84.8 (21.2) | 83.8 (26.0) | 76.3 (19.6) | 23.0 (24.9) | 3.2 (8.9) | 22.5 (26.5) | 8.8 (19.2) | 25.4 (31.6) | 6.0 (16.4) | 10.9 (21.3) | 8.9 (21.1) | 10.5 (25.3) |
Age (years) | |||||||||||||||
18–39 | 87.9 (17.9) | 81.3 (28.8) | 79.0 (23.7) | 86.2 (22.1) | 84.3 (26.2) | 77.6 (16.7) | 22.7 (26.1) | 3.4 (9.9) | 24.3 (27.9) | 4.8 (12.6) | 21.6 (32.0) | 5.7 (16.0) | 9.7 (21.0) | 7.7 (19.8) | 12.0 (26.8) |
≥40 | 84.3 (19.2) | 82.9 (25.3) | 79.7 (18.9) | 83.3 (20.2) | 83.3 (26.0) | 75.0 (22.1) | 23.3 (23.6) | 3.0 (7.7) | 20.6 (25.1) | 12.7 (23.4) | 29.1 (31.0) | 6.2 (16.9) | 12.1 (21.6) | 10.2 (22.4) | 9.0 (23.7) |
p-value | 0.043 | 0.924 | 0.552 | 0.087 | 0.603 | 0.717 | 0.511 | 0.969 | 0.318 | 0.006 | 0.017 | 0.857 | 0.292 | 0.332 | 0.305 |
Sex | |||||||||||||||
Male | 93.4 (10.2) | 90.1 (22.3) | 83.3 (17.9) | 86.8 (18.9) | 87.4 (22.1) | 80.0 (15.5) | 16.5 (20.9) | 2.2 (7.1) | 14.5 (21.0) | 4.8 (13.3) | 17.2 (23.2) | 2.7 (11.0) | 6.5 (16.9) | 9.1 (21.9) | 5.4 (17.3) |
Female | 83.5 (20.2) | 79.3 (28.1) | 77.9 (22.3) | 84.0 (22.0) | 82.6 (27.2) | 75.0 (20.8) | 25.3 (25.8) | 3.6 (9.4) | 25.3 (27.8) | 10.2 (20.8) | 28.3 (33.7) | 7.1 (17.8) | 12.5 (22.5) | 8.9 (20.9) | 12.3 (27.4) |
p-value | <0.001 | 0.002 | 0.147 | 0.486 | 0.318 | 0.195 | 0.022 | 0.224 | 0.005 | 0.075 | 0.052 | 0.046 | 0.040 | 0.888 | 0.094 |
Relationship status | |||||||||||||||
Partnered | 87.1 (16.7) | 83.7 (24.9) | 80.6 (20.9) | 85.6 (21.1) | 85.5 (24.6) | 77.1 (18.7) | 22.7 (24.4) | 3.3 (9.2) | 22.8 (25.8) | 8.5 (18.3) | 25.4 (31.3) | 5.3 (15.0) | 10.9 (21.6) | 9.2 (21.4) | 8.5 (22.8) |
Not partnered | 82.3 (24.0) | 76.4 (33.1) | 74.8 (22.6) | 81.4 (21.6) | 78.6 (29.8) | 73.6 (22.6) | 23.9 (26.7) | 2.8 (7.8) | 21.7 (29.2) | 10.1 (22.3) | 25.2 (33.3) | 8.2 (20.6) | 11.3 (20.6) | 6.9 (18.9) | 17.6 (31.7) |
p-value | 0.351 | 0.265 | 0.075 | 0.132 | 0.159 | 0.421 | 0.857 | 0.769 | 0.399 | 0.877 | 0.788 | 0.452 | 0.732 | 0.470 | 0.022 |
Education level | |||||||||||||||
Low | 81.5 (24.1) | 79.6 (28.5) | 80.1 (21.0) | 80.6 (23.7) | 83.3 (26.7) | 72.2 (23.1) | 25.6 (27.5) | 7.4 (14.6) | 22.2 (26.1) | 13.0 (24.3) | 26.9 (32.7) | 13.9 (24.4) | 13.9 (21.6) | 13.0 (25.5) | 13.0 (27.9) |
Medium | 84.6 (18.5) | 79.0 (28.9) | 77.4 (22.6) | 83.7 (21.1) | 80.2 (28.1) | 73.1 (19.7) | 25.2 (25.2) | 2.9 (8.2) | 23.8 (27.5) | 9.5 (18.8) | 25.7 (31.9) | 5.3 (16.0) | 12.2 (23.7) | 10.6 (23.3) | 12.4 (27.2) |
High | 90.6 (14.6) | 88.8 (21.5) | 82.3 (19.0) | 88.6 (19.6) | 90.4 (20.4) | 83.9 (15.4) | 17.8 (22.3) | 1.6 (4.9) | 20.3 (25.2) | 5.5 (16.7) | 24.2 (31.1) | 3.2 (9.9) | 7.3 (16.0) | 4.1 (12.4) | 5.9 (19.5) |
p-value# | 0.018 a | 0.038 b | 0.285 | 0.129 | 0.027 b | <0.001 a,b | 0.100 | 0.005 a,c | 0.671 | 0.132 | 0.910 | 0.004 a,c | 0.200 | 0.052 | 0.178 |
Employment status | |||||||||||||||
Working | 89.8 (14.4) | 86.8 (22.8) | 82.3 (19.5) | 88.1 (17.5) | 87.7 (21.3) | 78.9 (17.6) | 19.7 (22.5) | 2.3 (6.3) | 19.7 (24.1) | 7.1 (17.8) | 21.1 (29.2) | 4.7 (13.9) | 9.2 (19.2) | 8.2 (20.9) | 6.7 (22.0) |
Not working | 78.8 (23.2) | 73.1 (32.0) | 73.6 (23.7) | 78.3 (25.9) | 76.3 (32.1) | 71.3 (22.4) | 29.3 (28.0) | 5.0 (12.3) | 27.9 (30.2) | 12.1 (21.4) | 33.8 (34.6) | 8.3 (20.2) | 14.2 (24.7) | 10.4 (21.6) | 17.9 (29.5) |
p-value | <0.001 | <0.001 | 0.006 | 0.004 | 0.012 | 0.016 | 0.011 | 0.139 | 0.073 | 0.027 | 0.004 | 0.231 | 0.129 | 0.292 | <0.001 |
Comorbidity | |||||||||||||||
None | 91.5 (15.2) | 86.5 (24.6) | 85.0 (19.5) | 90.7 (15.6) | 90.2 (22.3) | 84.6 (14.4) | 12.8 (20.1) | 0.9 (4.6) | 17.0 (25.7) | 3.7 (12.7) | 17.0 (28.8) | 2.2 (9.7) | 5.9 (14.6) | 3.3 (14.2) | 5.9 (19.7) |
1 | 88.3 (15.0) | 84.9 (25.8) | 79.4 (18.1) | 84.7 (22.0) | 86.9 (21.4) | 76.2 (17.1) | 23.3 (24.1) | 4.1 (10.6) | 20.5 (22.8) | 5.9 (16.9) | 23.9 (30.0) | 5.4 (14.6) | 10.4 (19.8) | 6.8 (15.6) | 9.5 (23.1) |
≥2 | 76.9 (22.4) | 73.7 (29.6) | 72.1 (24.5) | 77.2 (24.1) | 72.5 (31.0) | 65.8 (22.8) | 35.5 (25.6) | 5.2 (10.4) | 31.5 (29.1) | 18.3 (24.4) | 37.6 (33.3) | 11.3 (22.5) | 17.8 (27.5) | 18.3 (29.2) | 17.4 (31.8) |
p-value# | <0.001 d,e | 0.006 d,e | 0.001 d | <0.001 d | <0.001 d,e | <0.001 d,e,f | <0.001 d,e,f | 0.006 d | 0.002 d,e | <0.001 d,e | <0.001 d,e | 0.002 d | 0.002 d | <0.001 d,e | 0.015 d |
Time since diagnosis | |||||||||||||||
<5 years | 87.1 (17.7) | 81.1 (27.7) | 79.9 (20.4) | 84.2 (21.6) | 85.3 (23.4) | 76.8 (20.6) | 23.2 (25.3) | 3.5 (9.2) | 23.8 (26.1) | 7.0 (17.0) | 24.3 (32.7) | 4.9 (13.2) | 9.8 (19.3) | 9.8 (22.6) | 7.2 (20.4) |
≥5 years | 84.9 (19.8) | 83.3 (26.2) | 78.6 (22.5) | 85.4 (20.8) | 82.1 (28.9) | 75.7 (18.5) | 22.7 (24.4) | 2.8 (8.4) | 20.9 (27.1) | 11.0 (21.4) | 26.7 (30.3) | 7.2 (19.5) | 12.3 (23.6) | 7.9 (19.3) | 14.5 (29.8) |
p-value | 0.411 | 0.515 | 0.790 | 0.770 | 0.587 | 0.473 | 0.969 | 0.413 | 0.237 | 0.134 | 0.289 | 0.610 | 0.604 | 0.690 | 0.062 |
Treatment received1 | |||||||||||||||
Only active surveillance | 90.2 (16.2) | 88.5 (19.2) | 86.3 (18.3) | 88.9 (20.0) | 92.0 (17.4) | 80.0 (18.4) | 17.9 (21.7) | 3.6 (10.9) | 19.5 (22.8) | 8.4 (19.2) | 20.3 (28.0) | 5.7 (14.6) | 10.7 (21.3) | 4.6 (13.6) | 3.1 (12.1) |
Only surgery | 86.4 (19.3) | 88.8 (22.6) | 81.4 (20.1) | 83.9 (23.0) | 87.2 (21.2) | 78.3 (19.8) | 21.5 (24.5) | 3.1 (7.9) | 18.8 (27.9) | 6.8 (17.0) | 21.4 (31.1) | 5.7 (16.3) | 14.1 (25.1) | 12.5 (24.8) | 8.9 (23.2) |
Other treatment | 81.6 (19.6) | 70.4 (32.8) | 70.5 (22.3) | 81.2 (20.5) | 72.8 (32.5) | 71.0 (19.8) | 29.4 (27.0) | 2.8 (7.2) | 28.4 (28.3) | 10.7 (20.8) | 33.7 (34.1) | 6.4 (18.3) | 8.7 (18.0) | 10.7 (23.8) | 19.4 (33.2) |
p-value# | 0.010 g | <0.001 g,h | <0.001 g,h | 0.053 | <0.001 g,h | 0.007 g | 0.008 g | 0.817 | 0.039 * | 0.455 | 0.010 g | 0.964 | 0.321 | 0.047 * | <0.001 g,h |
Recurrent disease | |||||||||||||||
Yes | 84.5 (19.2) | 80.5 (25.5) | 78.0 (22.3) | 82.9 (24.3) | 77.2 (29.5) | 78.9 (16.9) | 23.0 (24.8) | 4.5 (9.9) | 26.8 (29.1) | 4.1 (11.0) | 26.0 (30.3) | 6.5 (18.6) | 11.4 (21.9) | 16.3 (29.0) | 19.5 (31.6) |
No | 86.4 (18.5) | 82.5 (27.4) | 79.6 (21.2) | 85.1 (20.5) | 85.2 (25.1) | 75.8 (20.2) | 23.0 (24.9) | 2.9 (8.7) | 21.6 (26.0) | 9.8 (20.4) | 25.3 (32.0) | 5.8 (15.9) | 10.8 (21.3) | 7.4 (18.8) | 8.6 (23.4) |
p-value | 0.766 | 0.451 | 0.782 | 0.799 | 0.074 | 0.433 | 0.947 | 0.284 | 0.304 | 0.124 | 0.738 | 0.912 | 0.929 | 0.039 | 0.003 |
Recurrent disease after surgery (n = 98) | |||||||||||||||
Yes | 84.6 (19.2) | 80.5 (25.5) | 78.0 (22.3) | 82.9 (24.3) | 77.2 (29.5) | 78.9 (16.9) | 23.0 (24.8) | 4.5 (9.9) | 26.8 (29.1) | 4.1 (11.0) | 26.0 (30.3) | 6.5 (18.6) | 11.4 (21.9) | 16.3 (29.0) | 19.5 (31.6) |
No | 87.4 (18.4) | 87.1 (26.4) | 80.8 (19.5) | 85.4 (18.9) | 87.7 (20.3) | 76.3 (20.7) | 22.0 (25.2) | 2.3 (6.6) | 16.7 (27.3) | 7.6 (17.8) | 22.8 (33.4) | 4.7 (16.0) | 12.3 (24.1) | 7.6 (18.9) | 7.6 (20.9) |
p-value | 0.626 | 0.059 | 0.641 | 0.937 | 0.086 | 0.554 | 0.747 | 0.295 | 0.036 | 0.420 | 0.387 | 0.404 | 0.954 | 0.128 | 0.019 |
Tumour location | |||||||||||||||
Abdominal wall | 87.1 (20.8) | 82.8 (29.8) | 80.2 (23.9) | 83.0 (25.5) | 87.4 (25.0) | 76.1 (21.4) | 23.0 (28.5) | 4.9 (12.9) | 19.3 (25.3) | 9.8 (24.2) | 22.4 (33.3) | 8.6 (21.2) | 13.8 (27.2) | 7.5 (19.8) | 7.5 (20.7) |
Intra-abdominal | 90.9 (15.0) | 91.5 (16.6) | 87.0 (16.4) | 89.3 (18.5) | 87.2 (21.8) | 78.6 (22.0) | 19.4 (18.1) | 3.4 (8.7) | 8.1 (13.2) | 9.4 (20.2) | 16.2 (21.5) | 5.1 (16.3) | 7.7 (16.2) | 17.1 (30.5) | 6.0 (18.5) |
Upper extremity | 87.4 (15.3) | 81.0 (26.6) | 76.1 (21.1) | 81.0 (19.3) | 77.0 (28.3) | 75.6 (18.2) | 21.1 (25.3) | 1.7 (5.2) | 33.9 (30.0) | 6.9 (16.4) | 29.9 (31.3) | 2.3 (8.6) | 11.5 (20.5) | 3.4 (10.3) | 10.3 (23.7) |
Lower extremity | 80.9 (21.1) | 76.5 (28.0) | 76.9 (23.6) | 81.8 (22.9) | 76.5 (31.1) | 75.0 (16.1) | 25.3 (28.5) | 2.3 (5.9) | 31.8 (30.8) | 6.1 (13.2) | 34.8 (37.8) | 4.5 (11.7) | 10.6 (21.5) | 6.1 (13.2) | 22.7 (37.6) |
Head/neck | 83.1 (18.4) | 67.9 (35.7) | 75.6 (24.9) | 87.2 (16.9) | 83.3 (28.9) | 78.8 (17.9) | 24.8 (28.4) | 1.3 (4.6) | 28.2 (35.6) | 10.3 (21.0) | 35.9 (37.2) | 2.6 (9.2) | 10.3 (21.0) | 12.8 (16.9) | 17.9 (37.6) |
Trunk | 86.4 (17.4) | 84.9 (24.1) | 78.5 (19.1) | 86.7 (16.9) | 86.1 (22.4) | 76.5 (19.2) | 23.7 (21.6) | 3.4 (8.2) | 21.3 (22.3) | 9.3 (17.6) | 22.2 (29.7) | 6.2 (17.2) | 11.1 (19.4) | 9.3 (22.8) | 8.6 (23.5) |
Hip/pelvis/ gluteal region | 78.7 (21.9) | 71.7 (31.1) | 73.8 (22.3) | 82.5 (26.2) | 79.2 (33.3) | 72.5 (18.9) | 27.2 (28.3) | 1.7 (5.1) | 32.5 (30.8) | 8.3 (14.8) | 36.7 (34.0) | 8.3 (14.8) | 8.3 (18.3) | 5.0 (16.3) | 15.0 (27.5) |
p-value# | 0.225 | 0.044 * | 0.250 | 0.632 | 0.372 | 0.949 | 0.934 | 0.629 | <0.001 i,j,k | 0.985 | 0.091 | 0.650 | 0.895 | 0.141 | 0.157 |
DTF-QoL | ||||||||||||||
---|---|---|---|---|---|---|---|---|---|---|---|---|---|---|
Symptom Scales + | Impact Scales + | |||||||||||||
W1 Emotional | W2 Physical | W3 Pain | 1 Concerns Condition | 2 Job & Education | 3 Doctor-Patient | 4 Relation-ships | 5 Physical Consequences | 6 Diagnostic | 7 Parenting | 8 Body Image | 9 Support | 10 Treatment Concerns | 11 Behaviour DTF | |
Age | - | 0.152 * | - | −0.123 * | - | - | −0.185 ** | - | - | −0.324 ** | −0.132 * | - | −0.137 * | −0.167 ** |
Sex | - | −0.138 * | - | - | −0.169 ** | - | - | −0.187 ** | - | −0.275 ** | −0.191 ** | - | - | - |
Relationship status | - | - | - | - | - | - | - | - | - | - | - | - | - | - |
Education level | ||||||||||||||
Low | - | - | - | - | - | - | - | - | - | - | - | Ref | - | - |
Medium | - | - | - | - | - | - | - | - | - | - | - | 0.057 | - | - |
High | - | - | - | - | - | - | - | - | - | - | - | 0.215 * | - | - |
Employment status | - | - | - | - | −0.260 ** | - | - | - | - | - | - | - | - | - |
Comorbidity | ||||||||||||||
None | Ref | Ref | Ref | Ref | - | Ref | Ref | Ref | - | - | Ref | Ref | Ref | Ref |
1 | 0.157 * | 0.030 | 0.086 | 0.133 * | - | 0.069 | 0.227 ** | 0.085 | - | - | 0.127 * | 0.117 | 0.080 | 0.133 * |
≥2 | 0.156 * | 0.190 ** | 0.203 ** | 0.167 * | - | 0.195 ** | 0.268 ** | 0.201 ** | - | - | 0.137 * | 0.193 * | 0.191 ** | 0.264 ** |
Time since diagnosis | - | - | −0.146 * | - | - | - | - | - | - | - | - | 0.157 * | - | - |
Treatment received 1 | ||||||||||||||
Only active surveillance | Ref | Ref | Ref | Ref | Ref | - | Ref | Ref | Ref | Ref | Ref | - | Ref | Ref |
Only surgery | 0.094 | 0.124 | 0.072 | 0.061 | 0.206 ** | - | 0.145 * | 0.247 ** | 0.081 | −0.094 | 0.241 ** | - | 0.254 ** | 0.050 |
Other treatment | 0.368 ** | 0.297 ** | 0.256 ** | 0.415 ** | 0.502 ** | - | 0.417 ** | 0.529 ** | 0.252 ** | 0.335 ** | 0.522 ** | - | 0.443 ** | 0.414 ** |
Recurrence | - | - | - | 0.138 * | 0.141 * | - | - | - | - | - | - | - | - | 0.136 * |
Tumour location | ||||||||||||||
Abdominal wall | - | Ref | Ref | - | - | - | - | - | - | - | - | - | Ref | - |
Intra-abdominal | - | −0.068 | −0.148 * | - | - | - | - | - | - | - | - | - | −0.099 | - |
Upper extremity | - | −0.054 | 0.131 | - | - | - | - | - | - | - | - | - | 0.144 * | - |
Lower extremity | - | 0.259 ** | 0.037 | - | - | - | - | - | - | - | - | - | 0.198 ** | - |
Head/neck | - | −0.048 | −0.011 | - | - | - | - | - | - | - | - | - | −0.056 | - |
Trunk | - | −0.065 | −0.026 | - | - | - | - | - | - | - | - | - | −0.022 | - |
Hip/pelvis/ gluteal region | - | 0.190 ** | 0.223 ** | - | - | - | - | - | - | - | - | - | 0.023 | - |
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Schut, A.-R.W.; Lidington, E.; Timbergen, M.J.M.; Younger, E.; van der Graaf, W.T.A.; van Houdt, W.J.; Bonenkamp, J.J.; Jones, R.L.; Grünhagen, D.J.; Sleijfer, S.; et al. Unraveling Desmoid-Type Fibromatosis-Specific Health-Related Quality of Life: Who Is at Risk for Poor Outcomes. Cancers 2022, 14, 2979. https://doi.org/10.3390/cancers14122979
Schut A-RW, Lidington E, Timbergen MJM, Younger E, van der Graaf WTA, van Houdt WJ, Bonenkamp JJ, Jones RL, Grünhagen DJ, Sleijfer S, et al. Unraveling Desmoid-Type Fibromatosis-Specific Health-Related Quality of Life: Who Is at Risk for Poor Outcomes. Cancers. 2022; 14(12):2979. https://doi.org/10.3390/cancers14122979
Chicago/Turabian StyleSchut, Anne-Rose W., Emma Lidington, Milea J. M. Timbergen, Eugenie Younger, Winette T. A. van der Graaf, Winan J. van Houdt, Johannes J. Bonenkamp, Robin L. Jones, Dirk. J. Grünhagen, Stefan Sleijfer, and et al. 2022. "Unraveling Desmoid-Type Fibromatosis-Specific Health-Related Quality of Life: Who Is at Risk for Poor Outcomes" Cancers 14, no. 12: 2979. https://doi.org/10.3390/cancers14122979