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Table 3 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

RegionDgn

OR (95%C.I.)

p-value

IN

OUT

  

Gender

   

0.0958

 MALE

10 (40%)

15 (60%)

1

 

 FEMALE

20 (62.5%)

12 (37.5%)

0.41 (0.14: 1.17)

 

Macro Regiona

   

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

   

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

   

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

   

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

   

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

   

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

   

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

   

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

   

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

   

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

   

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

   

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

   

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

   

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

   

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

   

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

   

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

   

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

   

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

   

0.6365

 NO

17 (50%)

17 (50%)

1

 

 YES

13 (56.52%)

10 (43.48%)

0.78 (0.27: 2.21)

 

PolandDayUsefulness

   

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

   

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

   

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

   

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

   

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)

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