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%) |