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Table 5 Contingency tables and summary output of the univariate analysis. Characteristic: variable taken into account; OR (95% CI): Odds Ratio with 95% Confidence Interval; p-value: Likelihood Ratio p-value. aVariables entering the multivariate analysis (see the text for abbreviations and further details)

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

  

Gender

   

0.1182

 MALE

13 (52%)

12 (48%)

1

 

 FEMALE

10 (31.25%)

22 (68.75%)

2.31 (0.81: 6.86)

 

Macro Region

   

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

   

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

   

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

   

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

   

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

   

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

   

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

   

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

   

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

   

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

   

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

   

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

   

0.1556

 NO

3 (25%)

9 (75%)

1

 

 YES

14 (50%)

14 (50%)

0.37 (0.08: 1.45)

 

Feeling of Protection

   

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

   

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

   

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

   

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

   

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

   

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

   

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

   

0.0095

 No or Partial

0 (0%)

8 (100%)

1

 

 YES

23 (46.94%)

26 (53.06%)

0.07 (0: 0.58)

 

Volunteer

   

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

   

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

   

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

   

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)

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