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
| Characteristic | Overall |
|---|---|
| Age when filling in the questionnaire | 24.52 (16.91) |
| Gender | |
| MALE | 25 (43.86%) |
| FAMALE | 32 (56.14%) |
| Region Of Origin | |
| CALABRIA | 1 (1.75%) |
| CAMPANIA | 5 (8.77%) |
| EMILIA ROMAGNA | 5 (8.77%) |
| LAZIO | 6 (10.53%) |
| LIGURIA | 7 (12.28%) |
| LOMBARDIA | 7 (12.28%) |
| MOLISE | 1 (1.75%) |
| PIEMONTE | 4 (7.02%) |
| PUGLIA | 5 (8.77%) |
| SARDEGNA | 3 (5.26%) |
| SICILIA | 3 (5.26%) |
| TOSCANA | 6 (10.53%) |
| UMBRIA | 1 (1.75%) |
| VENETO | 3 (5.26%) |
| Time of Diagnosis | |
| EARLY | 23 (40.35%) |
| LATE | 34 (59.65%) |
| Who Diagnosed | |
| NEONATOLOGY UNIT | 10 (17.54%) |
| PEDIATRICIAN | 4 (7.02%) |
| GENERAL PRACTITIONER | 1 (1.75%) |
| SPECIALIZED MED CENTRE | 22 (38.6%) |
| SELF-DIAGNOSIS | 7 (12.28%) |
| OTHER | 13 (22.81%) |
| Region of Diagnosis | |
| IN | 30 (52.63%) |
| OUT | 27 (47.37%) |
| Time of Symptoms Onset | |
| AT BIRTH | 52 (91.23%) |
| 1 YEAR | 1 (1.75%) |
| 3 YEARS | 2 (3.51%) |
| 6 YEARS | 1 (1.75%) |
| 7 YEARS | 1 (1.75%) |
| Difficulty Finding a Specialist for Treatment | |
| NO | 29 (50.88%) |
| YES | 26 (45.61%) |
| DON’T KNOW | 2 (3.51%) |
| Quality of Treatment | |
| EXCELLENT | 16 (28.07%) |
| GOOD | 26 (45.61%) |
| SUFFICIENT | 7 (12.28%) |
| UNSATISFACTORY | 6 (10.53%) |
| OTHER | 2 (3.51%) |
| Impact | |
| NOT MY CASE | 24 (42.11%) |
| NONE | 20 (35.09%) |
| IMPORTANT PSY IMPACT | 11 (19.3%) |
| MILD PSY IMPACT | 1 (1.75%) |
| FUNCTIONAL IMPAIRMENT | 1 (1.75%) |
| OTHER | – |
| Reference Figure during Treatment | |
| NO | 16 (28.07%) |
| YES | 33 (57.89%) |
| DON’T KNOW | 8 (14.04%) |
| Feeling Understood during Treatment | |
| NO | 10 (17.54%) |
| YES | 42 (73.68%) |
| DON’T KNOW | 5 (8.77%) |
| Knowledge of tax Exemption | |
| NO | 3 (5.26%) |
| YES | 54 (94.74%) |
| How They Found Out about Exemption | |
| GENERAL PRACTITIONER | 8 (14.81%) |
| REGIONAL BOOKING MEDICAL CENTER | – |
| AISP | 28 (51.85%) |
| REFERENCE MEDICAL CENTER | 14 (25.93%) |
| OTHER | 4 (7.41%) |
| Exemption | |
| NO | 11 (19.3%) |
| YES | 46 (80.7%) |
| Sufficiency of the Exemption | |
| NO | 12 (30.0%) |
| YES | 28 (70.0%) |
| Feeling of Protection | |
| NO | 27 (47.37%) |
| YES | 12 (21.05%) |
| DON’T KNOW | 18 (31.58%) |
| Forgo Treatment | |
| NO | 33 (57.89%) |
| YES | 17 (29.82%) |
| DON’T KNOW | 7 (12.28%) |
| General Practitioner _Pediatrician’s Role | |
| FUNDAMENTAL | 5 (8.77%) |
| QUITE RELEVANT | 7 (12.28%) |
| NOT VERY RELEVANT | 22 (38.6%) |
| NOT AT ALL | 23 (40.35%) |
| Collaboration | |
| NO | 40 (70.18%) |
| YES | 6 (10.53%) |
| DON’T KNOW | 11 (19.3%) |
| AISP Usefulness | |
| NO | 1 (1.75%) |
| YES | 52 (91.23%) |
| DON’T KNOW | 4 (7.02%) |
| AISP Advantage in Care | |
| NO | 3 (5.26%) |
| YES | 42 (73.68%) |
| DON’T KNOW | 12 (21.05%) |
| Join AISP | |
| NO | 12 (21.05%) |
| YES | 45 (78.95%) |
| Participate in AISP Activities | |
| NO | 34 (59.65%) |
| YES | 23 (40.35%) |
| PolandDay Usefulness | |
| NO | 1 (1.75%) |
| PARTIAL | 7 (12.28%) |
| YES | 49 (85.96%) |
| Volunteer | |
| NO | 7 (12.28%) |
| YES | 19 (33.33%) |
| DON’T KNOW | 31 (54.39%) |
| Research | |
| YES | 56 (98.25%) |
| DON’T KNOW | 1 (1.75%) |
| Genetic Donation | |
| YES | 52 (91.23%) |
| DON’T KNOW | 5 (8.77%) |
| Family Involvement in Genetic Research | |
| NO | 4 (7.02%) |
| YES | 43 (75.44%) |
| DON’T KNOW | 10 (17.54%) |