Information was available at least at one time point (upon admission, 7 days of life, or 28 days of life) for a total of 262 neonates, 61.1% of whom were male. The main pathologies were prematurity (35.5%), congenital heart disease (21%), and pulmonary illness (19.9%). The number of responses obtained for the SQ was 784 (3.0 responses per patient on average). Consensus in responses was achieved for 226 (86.3%) of the patients. Table 1 shows the main characteristics overall and at each of the time points when the SQ was performed.
Table 1
Absolute frequencies and percentages of neonates at admission, at 7 days, and at 28 days, by sex and pathology
|
Total patients
|
Admission
|
7 days
|
28 days
|
Total
|
N
|
Percentage
|
N
|
Percentage
|
N
|
Percentage
|
N
|
Percentage
|
|
262
|
100,0%
|
201
|
100,0%
|
138
|
100,0%
|
56
|
100,0%
|
Sex
|
|
|
|
|
|
|
|
|
Male
|
160
|
61,1%
|
133
|
66,2%
|
80
|
58,0%
|
28
|
50,0%
|
Female
|
102
|
38,9%
|
68
|
33,8%
|
58
|
42,0%
|
28
|
50,0%
|
Pathology
|
|
|
|
|
|
|
|
|
Nervous system
|
24
|
9,2%
|
23
|
11,4%
|
8
|
5,8%
|
0
|
0,0%
|
Pulmonary
|
52
|
19,9%
|
41
|
20,4%
|
23
|
16,7%
|
4
|
7,1%
|
Heart disease
|
55
|
21,0%
|
42
|
20,9%
|
39
|
28,3%
|
16
|
28,6%
|
Prematurity
|
93
|
35,5%
|
64
|
31,8%
|
50
|
36,2%
|
35
|
62,5%
|
Others
|
38*
|
14,5%
|
31
|
15,4%
|
18
|
13,0%
|
1
|
1,8%
|
*The main reasons for admission were sepsis (n = 5) and hyperbilirubinemia (n = 5) |
Among the patient cohort, a total of 18 (6.9%) had deceased within 12 months of their birth. On the other hand, among the 262 patients, 57 (21.8%) had an expected SQ at some point, among whom 17 (29.8%) died, meaning approximately one in three who had an expected SQ at some point died before 12 months. Lastly, among the 205 (78.2%) who had an unexpected SQ at all time points, 1 (0.5%) had died before a year. Figure 1 shows the results of the SQ and survival globally and for each one of the evaluated moments in time. Neither the patient's status at 12 months (alive/exitus) nor the SQ outcome varied significantly based on the timing of the SQ (p = 0.740 for status and p = 0.368 for SQ outcome). Regarding its diagnostic performance, the SQ showed sensitivity, specificity, PPV, and NPV of 69.2–75.0%, 78.9–79.4%, 18.8–25.7%, and 97.1–97.6% respectively, varying depending on the timing of the SQ response. Table 2 details these results. As observed, the highest diagnostic performance was obtained at 7 days of life. There were no significant differences in results between premature patients and those with other types of pathologies (see Table S1) for any of the parameters evaluated and for any response time.
Table 2
Confusion matrix of prognostic test results (CI 95%) 1Number of patients with SQ at admission, 7 days of life and 28 days of life
|
Sensitivity
|
Specificity
|
PPV
|
NPV
|
Accuracy
|
N1
|
Admission
|
69,2
(38,6–90,9)
|
79,3
(72,8–84,8)
|
18,8
(9,0–32,6)
|
97,4
(93,4–99,3)
|
78,6
(72,3–84,1)
|
201
|
7 days
|
75,0
(42,8–94,5)
|
79,4
(71,3–86,1)
|
25,7
(12,5–43,3)
|
97,1
(91,7–99,4)
|
79,0
(71,2–85,5)
|
138
|
28 days
|
75,0
(19,4-0.99,4)
|
78,9
(65,3–88,9)
|
21,4
(4,7–50,8)
|
97,6
(87,4–99,9)
|
78.6
(65,6–88,4)
|
56
|
1Number of patients with SQ at admission, 7 days of life and 28 days of life
The characteristics of the 51 neonatologists who participated in the study, the majority of whom were female (78.3%) and less than 40 years of age (72.3%) are represented in Table 3. Responses to questions regarding PC and the SQ are also documented.
Table 3
Absolute frequencies and percentages of neonatologists by sex, age group, work experience, category, and response to questions about pediatric palliative care and SQ
Variables
|
N
|
Percentage out of the total valid responses
|
Percentage out of the total participants (N = 51)
|
|
51
|
100%
|
100%
|
Sex
|
46
|
|
90,2%
|
Male
|
10
|
21,7%
|
19,6%
|
Female
|
36
|
78,3%
|
70,6%
|
Age (years)
|
47
|
|
92,2%
|
20–29
|
26
|
55,3%
|
51,0%
|
30–39
|
8
|
17,0%
|
15,7%
|
40–49
|
10
|
21,3%
|
19,6%
|
50–59
|
2
|
4,3%
|
3,9%
|
> 60
|
1
|
2,1%
|
2,0%
|
Experience (years)
|
47
|
|
92.2%
|
< 5
|
31
|
66,0%
|
60,8%
|
5–10
|
3
|
6,4%
|
5,9%
|
> 10
|
13
|
27,7%
|
25,5%
|
Category
|
47
|
|
92,2%
|
Attending
|
22
|
46,8%
|
43,1%
|
Resident
|
25
|
53,2%
|
49,0%
|
¿Do you have clear criteria identifying patients eligible for pediatric palliative care?
|
47
|
|
92,2%
|
None
|
1
|
2,1%
|
2,0%
|
Very little
|
5
|
10,6%
|
9,8%
|
A little
|
26
|
55,3%
|
51,0%
|
Quite a bit
|
14
|
29,8%
|
27,5%
|
A lot
|
1
|
2,1%
|
2,0%
|
How much do you think the surprise question can help detect patients with palliative care needs?
|
47
|
|
92,2%
|
Not at all
|
0
|
0.0%
|
0,0%
|
Very little
|
0
|
0.0%
|
0,0%
|
A little
|
6
|
12,8%
|
11,8%
|
Quite a bit
|
36
|
76,6%
|
70,6%
|
A lot
|
5
|
10,6%
|
9,8%
|
How much do you think the surprise question can help detect patients who are likely to die within a year?
|
47
|
|
92,2%
|
Not at all
|
0
|
0,0%
|
0,0%
|
Very little
|
1
|
2,1%
|
2,0%
|
A little
|
8
|
17,0%
|
15,7%
|
Quite a bit
|
35
|
74,5%
|
68,6%
|
A lot
|
3
|
6,4%
|
5,9%
|
When do you think it would be best to refer a patient to a pediatric palliative care unit?
|
47
|
|
92,2%
|
Terminal stage
|
0
|
0,0%
|
0,0%
|
Incurable disease. Prognosis < 1 year
|
5
|
10,6%
|
9,8%
|
Life-threatening illness
|
41
|
87,2%
|
80,4%
|
When requested by the family
|
1
|
2,1%
|
2,0%
|