Table 1 Follow-up status among patientsa with primary metabolic disorders diagnosed through California Newborn Screening Program, over 5 years of follow-up and in each specific follow-up year

From: Follow-up status during the first 5 years of life for metabolic disorders on the federal Recommended Uniform Screening Panel

Follow-up status

  

In a specific follow-up year

 

Over five years of follow-up

Follow-up year 1

Follow-up year 2

Follow-up year 3

Follow-up year 4

Follow-up year 5

 

N

%

N

%

N

%

N

%

N

%

N

%

Sample size

426

100

426

100

352

100

310

100

284

100

259

100

Patients in active care

235

55.2

352

82.6

310

88.1

284

91.6

259

91.2

235

90.7

 Active

197b

46.2

342

80.3

305

86.6

276

89.0

247

87.0

214

82.6

 Transferred

16c

3.8

9

2.1

4

1.1

4

1.3

3

1.1

3

1.2

 Patient not seen

22d

5.2

1

0.2

1

0.3

4

1.3

9

3.2

18

6.9

Patients not in active care

191e

44.8

74

17.4

42

11.9

26

8.4

25

8.8

24

9.3

 Lost to follow-up

87

20.4

20

4.7

21

6.0

14

4.5

17

6.0

15

5.8

 Moved out of state

37

8.7

15

3.5

9

2.6

6

1.9

4

1.4

3

1.2

 Determined to require no further follow-up

27

6.3

13

3.1

6

1.7

3

1.0

2

0.7

3

1.2

 Refused follow-up

20

4.7

10

2.3

5

1.4

1

0.3

1

0.4

3

1.2

 Patient died

20

4.7

16

3.8

1

0.3

2

0.6

1

0.4

0

0.0

  1. aPatients with birth date from 7 July 2005 to 31 December 2009.
  2. bIn active care through each follow-up year.
  3. cThree patients were also reported as “Patient not seen” during one of the 5 years of follow-up.
  4. dNot including the three patients who were also “Transferred” during the study period. Three other patients were also reported as “Patient not seen” twice during the 5 years of follow-up.
  5. eSeven patients were reported as “Transferred” and five patients were reported as “Patient not seen” before they stopped being in active care.
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