Table 2.
Characteristics of fifteen focus group participants
| Number of patients (%) | Age in years (range) | |
|---|---|---|
| Sex | ||
| Male | 9 (60%) | |
| Female | 6 (40%) | |
| Age at time of focus group | ||
| Median (range) years | 46 (25–75) | |
| Age at time of diagnosis | ||
| Median (range) years | 43 (16–75) | |
| Marital status | ||
| Single | 3 (20%) | |
| Married | 9 (60%) | |
| Partnership | 2 (13%) | |
| Windowed | 0 (0%) | |
| Divorced | 1 (7%) | |
| Nationality | ||
| Dutch | 14 (93%) | |
| Other | 1 (7%) | |
| Highest completed education | ||
| Elementary education | 1 (7%) | |
| Secondary education | 2 (13%) | |
| Middle-level applied education | 3 (20%) | |
| Higher professional education | 6 (40%) | |
| Scientific education (university) | 1 (7%) | |
| Missing value | 2 (13%) | |
| Current paid employment | ||
| Yes | 8 (53%) | |
| No | 5 (33%) | |
| Retired | 2 (13%) | |
| Familiar with DTF before diagnosis | ||
| Yes | 0 (0%) | |
| No | 15 (100%) | |
| Location of DTF | ||
| Head/neck | 1 (7%) | |
| Upper extremity/shoulder | 2 (13%) | |
| Thoracic wall | 0 (0%) | |
| Abdominal wall | 4 (27%) | |
| Back | 1 (7%) | |
| Retroperitoneal/intra-abdominal | 2 (13%) | |
| Hip/pelvis/gluteal region | 2 (13%) | |
| Lower extremity | 3 (20%) | |
| Received treatment(s) | ||
| Conservative management | 4 (27%) | |
| Surgery | 8 (53%) | |
| Radiation therapy | 0 (0%) | |
| Systemic therapy | 0 (0%) | |
| Combination of therapiesa | 3 (20%) | |
| Contact with healthcare professionals | ||
| Physiotherapist/occupational therapist | 5 | |
| Dietician | 1 | |
| Social worker | 2 | |
| Psychologist | 1 | |
| Pain specialist | 1 | |
| Home care/nursing care | 1 | |
| Otherb | 1 | |
| Self-reported symptomsc | ||
| Lump with obvious growth | 10 | |
| Pain | 3 | |
| Tumour complains during daily activities | 8 | |
| Functional limitations (before treatment) | 3 | |
| Self-reported medical historyc | ||
| Surgery related desmoid | 6 | |
| Desmoid related to hormonal status | 3 | |
a n = 1 surgical resection with post-operative radiotherapy, n = 1 surgical resection, radiotherapy, and isolated limb perfusion (ILP), n = 1 surgical resection (with final amputation of the lower leg, radiotherapy, ILP, hormonal therapy, experimental chemotherapy)
bLymphatic therapy
cObtained during the focus group sessions as reported by the patients