From: Experiences of patients with Poland syndrome of diagnosis and care in Italy: a pilot survey
Characteristic | Descriptive statistics | Univariate analysis | ||
---|---|---|---|---|
RegionDgn | OR (95%C.I.) | p-value | ||
IN | OUT | Â | Â | |
Gender | Â | Â | Â | 0.0958 |
 MALE | 10 (40%) | 15 (60%) | 1 |  |
 FEMALE | 20 (62.5%) | 12 (37.5%) | 0.41 (0.14: 1.17) |  |
Macro Regiona | Â | Â | Â | 0.0041 |
 LIGURIA, LOMBARDIA | 12 (85.71%) | 2 (14.29%) | 1 |  |
 OTHERS | 18 (41.86%) | 25 (58.14%) | 6.89 (1.78: 38.57) |  |
Time of Diagnosisa | Â | Â | Â | 0.0372 |
 EARLY | 16 (69.57%) | 7 (30.43%) | 1 |  |
 LATE | 14 (41.18%) | 20 (58.82%) | 3.11 (1.07: 9.70) |  |
Who Diagnoseda | Â | Â | Â | 0.0045 |
 NEONATOLOGY UNIT | 9 (90%) | 1 (10%) | 1 |  |
 PEDIATRICIAN | 3 (75%) | 1 (25%) | 2.71 (0.18: 43.60) |  |
 GENERAL PRACTITIONER | 0 (0%) | 1 (100%) | 19 (0.69: 3428.71) |  |
 SPECIALIZED MED CENTRE | 6 (27.27%) | 16 (72.73%) | 16.08 (2.84: 173.45) |  |
 SELF-DIAGNOSIS | 2 (28.57%) | 5 (71.43%) | 13.93 (1.73: 197.59) |  |
 OTHER | 10 (76.92%) | 3 (23.08%) | 2.11 (0.28: 24.78) |  |
Time of Symptoms Onset | Â | Â | Â | 0.9999 |
 AT BIRTH | 0 (NaN%) | 0 (NaN%) | 1 |  |
 LATER | 3 (60%) | 2 (40%) | 1 (0.02: 60.68) |  |
Difficulty Finding a Specialist for Treatment | Â | Â | Â | 0.6585 |
 NO | 17 (58.62%) | 12 (41.38%) | 1 |  |
 YES | 12 (46.15%) | 14 (53.85%) | 1.62 (0.57: 4.71) |  |
 DON’T KNOW | 1 (50%) | 1 (50%) | 1.4 (0.1: 18.82) |  |
Quality of Treatment | Â | Â | Â | 0.5953 |
 EXCELLENT | 8 (50%) | 8 (50%) | 1 |  |
 GOOD | 16 (61.54%) | 10 (38.46%) | 0.64 (0.18: 2.17) |  |
 SUFFICIENT | 3 (42.86%) | 4 (57.14%) | 1.29 (0.24: 7.45) |  |
 UNSATISFACTORY | 3 (50%) | 3 (50%) | 1 (0.16: 6.08) |  |
 OTHER | 0 (0%) | 2 (100%) | 5 (0.34: 731.03) |  |
Impact | Â | Â | Â | 0.6293 |
 NOT MY CASE | 13 (54.17%) | 11 (45.83%) | 1 |  |
 NONE | 8 (40%) | 12 (60%) | 1.73 (0.54: 5.73) |  |
 IMPORTANT PSY IMPACT | 7 (63.64%) | 4 (36.36%) | 0.70 (0.16: 2.84) |  |
 MILD PSY IMPACT | 1 (100%) | 0 (0%) | 0.39 (0.00: 8.09) |  |
 FUNCTIONAL IMPAIRMENT | 1 (100%) | 0 (0%) | 0.39 (0: 8.09) |  |
Reference Figure during Treatment | Â | Â | Â | 0.9440 |
 NO | 9 (56.25%) | 7 (43.75%) | 1 |  |
 YES | 17 (51.52%) | 16 (48.48%) | 1.19 (0.37: 3.94) |  |
 DON’T KNOW | 4 (50%) | 4 (50%) | 1.27 (0.25: 6.63) |  |
Feeling Understood during Treatment | Â | Â | Â | 0.8257 |
 NO | 6 (60%) | 4 (40%) | 1 |  |
 YES | 21 (50%) | 21 (50%) | 1.44 (0.38: 5.90) |  |
 DON’T KNOW | 3 (60%) | 2 (40%) | 1.03 (0.12: 7.95) |  |
Knowledge of tax Exemption | Â | Â | Â | 0.6776 |
 NO | 2 (66.67%) | 1 (33.33%) | 1 |  |
 YES | 28 (51.85%) | 26 (48.15%) | 1.55 (0.19: 17.75) |  |
How They Found Out about Exemption | Â | Â | Â | 0.6893 |
 GENERAL PRACTITIONER | 5 (62.5%) | 3 (37.5%) | 1 |  |
 REGION BOOKING MEDICAL CENTER | 14 (50%) | 14 (50%) | 1.57 (0.35: 7.92) |  |
 AISP | 6 (42.86%) | 8 (57.14%) | 2.05 (0.39: 12.06) |  |
 REFERENCE MEDICAL CENTER | 3 (75%) | 1 (25%) | 0.67 (0.05: 6.64) |  |
Exemption | Â | Â | Â | 0.8995 |
 NO | 6 (54.55%) | 5 (45.45%) | 1 |  |
 YES | 24 (52.17%) | 22 (47.83%) | 1.09 (0.30: 4.02) |  |
Sufficiency of the Exemption | Â | Â | Â | 0.5038 |
 NO | 5 (41.67%) | 7 (58.33%) | 1 |  |
 YES | 15 (53.57%) | 13 (46.43%) | 0.64 (0.16: 2.38) |  |
Feeling of Protection | Â | Â | Â | 0.0691 |
 NO | 10 (37.04%) | 17 (62.96%) | 1 |  |
 YES | 9 (75%) | 3 (25%) | 0.22 (0.05: 0.88) |  |
 DON’T KNOW | 11 (61.11%) | 7 (38.89%) | 0.39 (0.11: 1.27) |  |
Forgo Treatmenta | Â | Â | Â | 0.0003 |
 NO | 23 (69.7%) | 10 (30.3%) | 1 |  |
 YES | 2 (11.76%) | 15 (88.24%) | 13.88 (3.47: 80.21) |  |
 DON’T KNOW | 5 (71.43%) | 2 (28.57%) | 1.02 (0.16: 5.08) |  |
General Practitioner _Pediatrician’s Role |  |  |  | 0.3299 |
 FUNDAMENTAL | 2 (40%) | 3 (60%) | 1 |  |
 QUITE RELEVANT | 6 (85.71%) | 1 (14.29%) | 0.16 (0.01: 1.61) |  |
 LITTLE RELEVANT | 11 (50%) | 11 (50%) | 0.71 (0.10: 4.42) |  |
 NONE | 11 (47.83%) | 12 (52.17%) | 0.78 (0.11: 4.77) |  |
Collaboration | Â | Â | Â | 0.9846 |
 NO | 21 (52.5%) | 19 (47.5%) | 1 |  |
 YES | 3 (50%) | 3 (50%) | 1.10 (0.21: 5.79) |  |
 DON’T KNOW | 6 (54.55%) | 5 (45.45%) | 0.93 (0.25: 3.42) |  |
AISP Usefulness | Â | Â | Â | 0.7134 |
 NO | 0 (0%) | 1 (100%) | 1 |  |
 YES | 28 (53.85%) | 24 (46.15%) | 0.29 (0: 5.63) |  |
 DON’T KNOW | 2 (50%) | 2 (50%) | 0.33 (0: 10.12) |  |
AISP Advantage in Care | Â | Â | Â | 0.6757 |
 NO | 2 (66.67%) | 1 (33.33%) | 1 |  |
 YES | 23 (54.76%) | 19 (45.24%) | 1.38 (0.17: 16.05) |  |
 DON’T KNOW | 5 (41.67%) | 7 (58.33%) | 2.27 (0.23: 30.51) |  |
Join AISP | Â | Â | Â | 0.4025 |
 NO | 5 (41.67%) | 7 (58.33%) | 1 |  |
 YES | 25 (55.56%) | 20 (44.44%) | 0.59 (0.16: 2.03) |  |
Participate in AISP Activities | Â | Â | Â | 0.6365 |
 NO | 17 (50%) | 17 (50%) | 1 |  |
 YES | 13 (56.52%) | 10 (43.48%) | 0.78 (0.27: 2.21) |  |
PolandDayUsefulness | Â | Â | Â | 0.3722 |
 No or Partial | 3 (37.5%) | 5 (62.5%) | 1 |  |
 YES | 27 (55.1%) | 22 (44.9%) | 0.52 (0.11: 2.18) |  |
Volunteer | Â | Â | Â | 0.2516 |
 NO | 3 (42.86%) | 4 (57.14%) | 1 |  |
 YES | 13 (68.42%) | 6 (31.58%) | 0.37 (0.06: 2.00) |  |
 DON’T KNOW | 14 (45.16%) | 17 (54.84%) | 0.94 (0.18: 4.51) |  |
Research | Â | Â | Â | 0.5067 |
 YES | 29 (51.79%) | 27 (48.21%) | 1 |  |
 DON’T KNOW | 1 (100%) | 0 (0%) | 0.36 (0.00: 7.00) |  |
Genetic Donation | Â | Â | Â | 0.2339 |
 YES | 26 (50%) | 26 (50%) | 1 |  |
 DON’T KNOW | 4 (80%) | 1 (20%) | 0.33 (0.03: 1.96) |  |
Family Involvement in Genetic Research | Â | Â | Â | 0.5371 |
 NO | 1 (25%) | 3 (75%) | 1 |  |
 YES | 23 (53.49%) | 20 (46.51%) | 0.37 (0.03: 2.50) |  |
 DON’T KNOW | 6 (60%) | 4 (40%) | 0.3 (0.02: 2.58) |  |