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Table 2 Demographic and clinical characteristics of study participants (n = 57). The results are expressed as mean with standard deviation or as number of subjects with percentage

From: Experiences of patients with Poland syndrome of diagnosis and care in Italy: a pilot survey

CharacteristicOverall
Age when filling in the questionnaire24.52 (16.91)
Gender
 MALE25 (43.86%)
 FAMALE32 (56.14%)
Region Of Origin
 CALABRIA1 (1.75%)
 CAMPANIA5 (8.77%)
 EMILIA ROMAGNA5 (8.77%)
 LAZIO6 (10.53%)
 LIGURIA7 (12.28%)
 LOMBARDIA7 (12.28%)
 MOLISE1 (1.75%)
 PIEMONTE4 (7.02%)
 PUGLIA5 (8.77%)
 SARDEGNA3 (5.26%)
 SICILIA3 (5.26%)
 TOSCANA6 (10.53%)
 UMBRIA1 (1.75%)
 VENETO3 (5.26%)
Time of Diagnosis
 EARLY23 (40.35%)
 LATE34 (59.65%)
Who Diagnosed
 NEONATOLOGY UNIT10 (17.54%)
 PEDIATRICIAN4 (7.02%)
 GENERAL PRACTITIONER1 (1.75%)
 SPECIALIZED MED CENTRE22 (38.6%)
 SELF-DIAGNOSIS7 (12.28%)
 OTHER13 (22.81%)
Region of Diagnosis
 IN30 (52.63%)
 OUT27 (47.37%)
Time of Symptoms Onset
 AT BIRTH52 (91.23%)
 1 YEAR1 (1.75%)
 3 YEARS2 (3.51%)
 6 YEARS1 (1.75%)
 7 YEARS1 (1.75%)
Difficulty Finding a Specialist for Treatment
 NO29 (50.88%)
 YES26 (45.61%)
 DON’T KNOW2 (3.51%)
Quality of Treatment
 EXCELLENT16 (28.07%)
 GOOD26 (45.61%)
 SUFFICIENT7 (12.28%)
 UNSATISFACTORY6 (10.53%)
 OTHER2 (3.51%)
Impact
 NOT MY CASE24 (42.11%)
 NONE20 (35.09%)
 IMPORTANT PSY IMPACT11 (19.3%)
 MILD PSY IMPACT1 (1.75%)
 FUNCTIONAL IMPAIRMENT1 (1.75%)
 OTHER
Reference Figure during Treatment
 NO16 (28.07%)
 YES33 (57.89%)
 DON’T KNOW8 (14.04%)
Feeling Understood during Treatment
 NO10 (17.54%)
 YES42 (73.68%)
 DON’T KNOW5 (8.77%)
Knowledge of tax Exemption
 NO3 (5.26%)
 YES54 (94.74%)
How They Found Out about Exemption
 GENERAL PRACTITIONER8 (14.81%)
 REGIONAL BOOKING MEDICAL CENTER
 AISP28 (51.85%)
 REFERENCE MEDICAL CENTER14 (25.93%)
 OTHER4 (7.41%)
Exemption
 NO11 (19.3%)
 YES46 (80.7%)
Sufficiency of the Exemption
 NO12 (30.0%)
 YES28 (70.0%)
Feeling of Protection
 NO27 (47.37%)
 YES12 (21.05%)
 DON’T KNOW18 (31.58%)
Forgo Treatment
 NO33 (57.89%)
 YES17 (29.82%)
 DON’T KNOW7 (12.28%)
General Practitioner _Pediatrician’s Role
 FUNDAMENTAL5 (8.77%)
 QUITE RELEVANT7 (12.28%)
 NOT VERY RELEVANT22 (38.6%)
 NOT AT ALL23 (40.35%)
Collaboration
 NO40 (70.18%)
 YES6 (10.53%)
 DON’T KNOW11 (19.3%)
AISP Usefulness
 NO1 (1.75%)
 YES52 (91.23%)
 DON’T KNOW4 (7.02%)
AISP Advantage in Care
 NO3 (5.26%)
 YES42 (73.68%)
 DON’T KNOW12 (21.05%)
Join AISP
 NO12 (21.05%)
 YES45 (78.95%)
Participate in AISP Activities
 NO34 (59.65%)
 YES23 (40.35%)
PolandDay Usefulness
 NO1 (1.75%)
 PARTIAL7 (12.28%)
 YES49 (85.96%)
Volunteer
 NO7 (12.28%)
 YES19 (33.33%)
 DON’T KNOW31 (54.39%)
Research
 YES56 (98.25%)
 DON’T KNOW1 (1.75%)
Genetic Donation
 YES52 (91.23%)
 DON’T KNOW5 (8.77%)
Family Involvement in Genetic Research
 NO4 (7.02%)
 YES43 (75.44%)
 DON’T KNOW10 (17.54%)