Table 1.
Review of literature Patient-Reported Outcome Measurements (PROMs)
| Score 1 | Score 2/additional interests | Ref. | N (N-PROM) | Location | T | Outcome pre-treatment | Outcome post-treatment |
|---|---|---|---|---|---|---|---|
| DASH | – | [26] | 14 (1)a | UE | SG | NA | n = 1 DASH 38 (after interthoracoscapular amputation)a |
| MSTS score | [24] | 12 (1)a | UE | SG | NA | n = 1a MSTS 50%b (pain 2, function 1, acceptance 2, hand positioning 4, dexterity 3, lifting 3), DASH 62.5b | |
| Enneking score/MSTS score | – | [27] | 21 | UE | SG BT |
NA | Mean MSTS 79%b (range 57–97%) n = 10 (48%) excellent; n = 10 (48%) good; n = 1 (4%) medium |
| Pain functional impairment | [30] | 7 | UE | SG ARTx CT |
NA | Mean MSTS 73% (range 36–90%), n = 5 moderate functional impairment of the shoulder, n = 1 deficit flexion and extension of the elbow. n = 2 pain with use of medication | |
| TESS | [28] | 14 (1)a | UE | SG | NA | n = 1 MSTS 50 (pain 3, function 2, acceptance 5, hand positioning 0, dexterity 5, lifting 0), TESS 62a | |
| EORTC QLQ-C30 | [19] | 14 | AW | SG | NA | Mean global health statusb: 97 (± 5.9); physical functioning 93 (± 11.1); role functioning 89 (± 16.7); emotional functioning 87 (± 19.1); cognitive functioning 94 (± 8.3); social functioning 93 (± 14.7) | |
| MDASI | – | [32] | 17 | AS | GSI | NA | Mean symptom severity: partial responders (n = 5): 1.65 point improvement, stable disease (n = 5): 0.8 point improvement, no response/dropout (n = 7) 0.04 point improvement |
| Modified Johnstone scale | – | [34] | 40 (24) | AS | SG ARTx CT |
n = 24 amputation required (grade 0): n = 1 (4%), severe functional deficit (grade 1): n = 1 (4%), major functional limitations (grade 2): n = 4 (17%), mild functional limitations (grade 3): n = 7 (29%), no functional limitations (grade 4): n = 9 (38%), NA: n = 2 (8%) | n = 24 grade 0: n = 5 (21%); grade 1: n = 0; grade 2: n = 6 (25%); grade 3: n = 3 (13%); grade 4: n = 8 (33%) not recorded: n = 2 (8%) |
| NRS | – | [37] | 15 (6) | EA | MRgFUS CT CA |
n = 6 NRS 7.5 (± 1.9) (worst daily NRS); n = 6 NRS 6 (± 2.3) (average daily NRS) | n = 6 NRS 2.7 (± 2.6) (worst daily NRS); n = 6 NRS 1.3 (± 2) (average daily NRS) |
| – | [38] | 44 | AS | ST | Median NRS 6 (IQR 2–7) group B: median NRS 7/10; n = 7 moderate pain, n = 17 severe pain; group C: n = 8 severe painc | Group B n = 12 (75%) pain improvement, n = 1 (6%) pain worsening, n = 3 (19%) stable symptoms; group C: n = 8 (100%) pain reliefc | |
| Other scores | Functional outcome | [43] | 21 | HN | SG ARTx |
Asymptomatic n = 14 (62%), neurologic symptoms n = 8 (38%) | n = 8 (38%) good, n = 13 (62%) persistent functional problems (motor (n = 7), paraesthesia (n = 4)) |
| Functional impairment | [41] | 106 | AS | SG ARTx RTx ST |
NA | 0–1 T: 23% functional impairment: moderate n = 13, major n = 2; 2 T: 56% functional impairment: moderate n = 8, major n = 7; ≥ 3 T: 74% functional impairment: moderate n = 7, major n = 10 | |
| Pain, functional, impairment cosmetic outcome | [42] | 12 (7) | EA | CT | n = 7 pain; n = 7 functional limitation; n = 3 cosmesis | n = 6 pain relief; n = 3 partial improvement of function, n = 4 restore of normal function; n = 2 improvement of cosmetic outcome |
PROM Patient-Reported Outcome Measurement, Ref. Reference, N Number of patients, N-PROM Number of patients with DTF and available patient-reported outcomes, T Treatment, DASH Disabilities of the Arm, Shoulder, and Hand, Enneking/MSTS score Enneking score adopted by the Musculoskeletal Tumour Society, EORTC QLQ-C30 The European Organisation for Research and Treatment of Cancer quality of life questionnaire C30, TESS Toronto Extremity Salvage score, MDASI MD Anderson symptom Inventory, NRS Numerical Rating Scale, PD Progressive disease, NA Not applicable, AS all sites, EA extra-abdominal, AW abdominal wall, IA intra-abdominal, LE lower extremities, HN head and neck, UE upper extremities, ACT adjuvant chemotherapy, ARTx adjuvant radiotherapy, BT brachytherapy, CA cryoablation, CT chemotherapy, GSI γ-secretase inhibitor, MRgFUS magnetic resonance-guided focused ultrasound, NSG no-surgery, SG surgery, RTx radiotherapy
aDesmoid-type fibromatosis and soft tissue sarcoma combined, reported outcome for subgroup of DTF
bAt most recent reported follow-up
c Group A radiological progressive disease (PD), Group B symptomatic deterioration, and Group C radiologically PD and symptomatic deterioration