From: Experiences of patients with Poland syndrome of diagnosis and care in Italy: a pilot survey
Characteristic | Descriptive statistics | Univariate analysis | ||
---|---|---|---|---|
Time of Diagnosis | OR (95%C.I.) | p-value | ||
EARLY | LATE | Â | Â | |
Gender | Â | Â | Â | 0.1182 |
 MALE | 13 (52%) | 12 (48%) | 1 |  |
 FEMALE | 10 (31.25%) | 22 (68.75%) | 2.31 (0.81: 6.86) |  |
Macro Region | Â | Â | Â | 0.7131 |
 LIGURIA, LOMBARDIA | 5 (35.71%) | 9 (64.29%) | 1 |  |
 OTHERS | 18 (41.86%) | 25 (58.14%) | 0.8 (0.23: 2.62) |  |
Region of Diagnosisa | Â | Â | Â | 0.0372 |
 IN | 16 (53.33%) | 14 (46.67%) | 1 |  |
 OUT | 7 (25.93%) | 20 (74.07%) | 3.11 (1.07: 9.7) |  |
Who Diagnoseda | Â | Â | Â | 0.0015 |
 NEONATOLOGY UNIT | 10 (100%) | 0 (0%) | 1 |  |
 PEDIATRICIAN | 2 (50%) | 2 (50%) | 21 (1.22: 3297.07) |  |
 GENERAL PRACTITIONER | 0 (0%) | 1 (100%) | 63 (1.55: 22813.53) |  |
 SPECIALIZED MED CENTRE | 7 (31.82%) | 15 (68.18%) | 43.4 (4.52: 5865.49) |  |
 SELF-DIAGNOSIS | 1 (14.29%) | 6 (85.71%) | 91 (6.1: 14644.97) |  |
 OTHER | 3 (23.08%) | 10 (76.92%) | 63 (5.62: 8933.3) |  |
Time of Symptoms Onset | Â | Â | Â | 0.3965 |
 AT BIRTH | 22 (42.31%) | 30 (57.69%) | 1 |  |
 LATER | 1 (20%) | 4 (80%) | 2.21 (0.37: 23.2) |  |
Difficulty Finding a Specialist for Treatmenta | Â | Â | Â | 0.0193 |
 NO | 17 (58.62%) | 12 (41.38%) | 1 |  |
 YES | 6 (23.08%) | 20 (76.92%) | 4.42 (1.46: 14.66) |  |
 DON’T KNOW | 0 (0%) | 2 (100%) | 7 (0.51: 998.96) |  |
Quality of Treatment | Â | Â | Â | 0.5070 |
 EXCELLENT | 7 (43.75%) | 9 (56.25%) | 1 |  |
 GOOD | 13 (50%) | 13 (50%) | 0.79 (0.23: 2.67) |  |
 SUFFICIENT | 2 (28.57%) | 5 (71.43%) | 1.74 (0.31: 12) |  |
 UNSATISFACTORY | 1 (16.67%) | 5 (83.33%) | 2.89 (0.44: 32.89) |  |
 OTHER | 0 (0%) | 2 (100%) | 3.95 (0.27: 577.44) |  |
Impacta | Â | Â | Â | 0.0160 |
 NOT MY CASE | 15 (62.5%) | 9 (37.5%) | 1 |  |
 NONE | 4 (20%) | 16 (80%) | 5.98 (1.7: 24.58) |  |
 IMPORTANT PSY IMPACT | 2 (18.18%) | 9 (81.82%) | 6.2 (1.38: 38.2) |  |
 MILD PSY IMPACT | 1 (100%) | 0 (0%) | 0.54 (0: 11.32) |  |
 FUNCTIONAL IMPAIRMENT | 1 (100%) | 0 (0%) | 0.54 (0: 11.32) |  |
Reference Figure during Treatment | Â | Â | Â | 0.8297 |
 NO | 6 (37.5%) | 10 (62.5%) | 1 |  |
 YES | 13 (39.39%) | 20 (60.61%) | 0.94 (0.27: 3.08) |  |
 DON’T KNOW | 4 (50%) | 4 (50%) | 0.62 (0.12: 3.22) |  |
Feeling Understood during Treatment | Â | Â | Â | 0.5698 |
 NO | 3 (30%) | 7 (70%) | 1 |  |
 YES | 17 (40.48%) | 25 (59.52%) | 0.68 (0.15: 2.65) |  |
 DON’T KNOW | 3 (60%) | 2 (40%) | 0.33 (0.04: 2.54) |  |
Knowledge of tax Exemption | Â | Â | Â | 0.2009 |
 NO | 0 (0%) | 3 (100%) | 1 |  |
 YES | 23 (42.59%) | 31 (57.41%) | 0.19 (0: 2.12) |  |
How They Found Out about Exemptiona | Â | Â | Â | 0.0468 |
 GENERAL PRACTITIONER | 7 (87.5%) | 1 (12.5%) | 1 |  |
 REGION BOOKING MEDICAL CENTER | 10 (35.71%) | 18 (64.29%) | 8.81 (1.6: 92.23) |  |
 AISP | 4 (28.57%) | 10 (71.43%) | 11.67 (1.78: 137.63) |  |
 REFERENCE MEDICAL CENTER | 2 (50%) | 2 (50%) | 5 (0.45: 80.16) |  |
Exemption | Â | Â | Â | 0.1047 |
 NO | 2 (18.18%) | 9 (81.82%) | 1 |  |
 YES | 21 (45.65%) | 25 (54.35%) | 0.31 (0.06: 1.26) |  |
Sufficiency of the Exemption | Â | Â | Â | 0.1556 |
 NO | 3 (25%) | 9 (75%) | 1 |  |
 YES | 14 (50%) | 14 (50%) | 0.37 (0.08: 1.45) |  |
Feeling of Protection | Â | Â | Â | 0.1048 |
 NO | 8 (29.63%) | 19 (70.37%) | 1 |  |
 YES | 8 (66.67%) | 4 (33.33%) | 0.23 (0.05: 0.9) |  |
 DON’T KNOW | 7 (38.89%) | 11 (61.11%) | 0.67 (0.19: 2.3) |  |
Forgo Treatment | Â | Â | Â | 0.3773 |
 NO | 16 (48.48%) | 17 (51.52%) | 1 |  |
 YES | 5 (29.41%) | 12 (70.59%) | 2.14 (0.66: 7.62) |  |
 DON’T KNOW | 2 (28.57%) | 5 (71.43%) | 2.07 (0.43: 12.88) |  |
General Practitioner _Pediatrician ‘s Role |  |  |  | 0.2250 |
 FUNDAMENTAL | 4 (80%) | 1 (20%) | 1 |  |
 QUITE RELEVANT | 2 (28.57%) | 5 (71.43%) | 6.6 (0.71: 99.65) |  |
 LITTLE RELEVANT | 10 (45.45%) | 12 (54.55%) | 3.57 (0.54: 39.93) |  |
 NONE | 7 (30.43%) | 16 (69.57%) | 6.6 (1: 74.93) |  |
Collaboration | Â | Â | Â | 0.2571 |
 NO | 18 (45%) | 22 (55%) | 1 |  |
 YES | 3 (50%) | 3 (50%) | 0.82 (0.16: 4.32) |  |
 DON’T KNOW | 2 (18.18%) | 9 (81.82%) | 3.12 (0.76: 17.93) |  |
AISP Usefulness | Â | Â | Â | 0.767 |
 NO | 0 (0%) | 1 (100%) | 1 |  |
 YES | 22 (42.31%) | 30 (57.69%) | 0.45 (0: 8.88) |  |
 DON’T KNOW | 1 (25%) | 3 (75%) | 0.78 (0: 28.48) |  |
AISP Advantage in Care | Â | Â | Â | 0.1429 |
 NO | 2 (66.67%) | 1 (33.33%) | 1 |  |
 YES | 19 (45.24%) | 23 (54.76%) | 2.01 (0.25: 23.32) |  |
 DON’T KNOW | 2 (16.67%) | 10 (83.33%) | 7 (0.65: 109.9) |  |
Join AISP | Â | Â | Â | 0.2438 |
 NO | 3 (25%) | 9 (75%) | 1 |  |
 YES | 20 (44.44%) | 25 (55.56%) | 0.46 (0.1: 1.67) |  |
Participate in AISP Activitiesa | Â | Â | Â | 0.0103 |
 NO | 9 (26.47%) | 25 (73.53%) | 1 |  |
 YES | 14 (60.87%) | 9 (39.13%) | 0.24 (0.08: 0.72) |  |
PolandDay Usefulnessa | Â | Â | Â | 0.0095 |
 No or Partial | 0 (0%) | 8 (100%) | 1 |  |
 YES | 23 (46.94%) | 26 (53.06%) | 0.07 (0: 0.58) |  |
Volunteer | Â | Â | Â | 0.4363 |
 NO | 2 (28.57%) | 5 (71.43%) | 1 |  |
 YES | 6 (31.58%) | 13 (68.42%) | 0.94 (0.14: 5.3) |  |
 DON’T KNOW | 15 (48.39%) | 16 (51.61%) | 0.48 (0.08: 2.36) |  |
Research | Â | Â | Â | 0.6361 |
 YES | 23 (41.07%) | 33 (58.93%) | 1 |  |
 DON’T KNOW | 0 (0%) | 1 (100%) | 2.1 (0.11: 312.63) |  |
Genetic Donation | Â | Â | Â | 0.0715 |
 YES | 19 (36.54%) | 33 (63.46%) | 1 |  |
 DON’T KNOW | 4 (80%) | 1 (20%) | 0.19 (0.02: 1.15) |  |
Family Involvement in Genetic Research | Â | Â | Â | 0.3269 |
 NO | 2 (50%) | 2 (50%) | 1 |  |
 YES | 15 (34.88%) | 28 (65.12%) | 1.84 (0.26: 13.04) |  |
 DON’T KNOW | 6 (60%) | 4 (40%) | 0.69 (0.08: 6.17) |  |