Clinical-epidemiological profile of children in palliative care

Igo Borges dos Santos

lead author

collected

tabulated

and analyzed the data

. Escola de Saúde Pública do Estado do Ceará, Fortaleza/CE, Brasil.

Joana Maria Rocha Sales

systematized the results

. Escola de Saúde Pública do Estado do Ceará, Fortaleza/CE, Brasil.

Vanilla Oliveira Alencar

formatted the article and organized the references

. Escola de Saúde Pública do Estado do Ceará, Fortaleza/CE, Brasil.

Isabel Regiane Cardoso do Nascimento

advised the research project and collaborated in writing the discussion

. Hospital Infantil Albert Sabin, Fortaleza/CE, Brasil.

Cesár Augusto Ferreira Gomes de Andrade

collaborated by reviewing the manuscript

. Hospital Infantil Albert Sabin, Fortaleza/CE, Brasil.

Cinara Carneiro Neves

collaborated by reviewing the manuscript

. Hospital Infantil Albert Sabin, Fortaleza/CE, Brasil.

Luana Nunes Caldini

collaborated by reviewing the manuscript

. Universidade Federal do Ceará, Fortaleza/CE, Brasil.

Correspondence: Igo Borges dos Santos – Rua Farias Lemos, 800, bloco B, ap. 611, Messejana CEP 60841-455. Fortaleza/CE, Brasil.

Group	Example
Conditions where cure is possible but may fail.	Complex congenital or acquired heart disease, organ failure with recommendation for transplant, etc.
Clinical conditions requiring complex and prolonged treatment.	Cystic fibrosis, sickle cell anemia, chronic renal failure, neuromuscular diseases, etc.
Situations in which treatment is palliative from diagnosis.	Severe forms of osteogenesis imperfecta, some chromosomal abnormalities such as trisomy 13 and trisomy 18, etc.
Severe and non-progressive disabling conditions.	Extreme prematurity, severe cerebral palsy, severe anoxia, etc.

Sociodemographic profile	N	%
Gender
Male	27	48.2
Female	29	51.8
Age group
Neonate (>28 days)	12	21.4
Infant/Preschooler (29 days-2 years, 11 months and 29 days)	44	78.6
Origin (n=54)
Fortaleza and metropolitan region	26	48.1
Other municipalities in the state	28	51.9
Clinical-epidemiological profile
ICD chapter (n=56)
Respiratory tract diseases	3	5.4
Endocrine, nutritional, and metabolic diseases	3	5.4
Diseases of the circulatory system	18	32.1
Nervous system diseases	30	53.6
Diseases of the digestive system	3	5.4
Congenital malformations, deformities, and chromosomal anomalies	27	48.2
Genitourinary diseases	7	12.5
Need for respiratory support
Yes	33	58.9
No	23	41.1
Need for invasive mechanical ventilation
Yes	27	48.2
No	29	51.8
Need for feeding device
Yes	33	58.9
No	23	41.1
Number of admissions
1	27	48.2
2	11	19.6
>3	18	32.1
Number of intensive care unit (ICU) admissions
None	13	23.2
1	39	69.6
>2	4	7.1

Obstetric variables	N	%
Maternal age (n=40)
15-35	31	77.5
>35	9	22.5
Number of prenatal consultations (n=37)
None	1	2.7
1-6 consultations	21	56.8
>7 consultations	15	40.5
Childbirth variables
Means of delivery (n=48)
Natural	21	43.8
C-section	27	56.3
Classification according to gestational age (n=47)
Premature	18	38.3
Full term	29	61.7
Classification according to birth weight (n=47)
Extremely low (<1,000 g)	2	4.4
Very low (<1,500 g)	4	8.7
Low (<2,500 g)	8	17.4
Normal (2,500-4,000 g)	30	65.2
Macrosomic (>4,000 g)	2	4.4
Apgar rating at the fifth minute (n=40)
Moderate asphyxia	9	22.5
Mild asphyxia	4	10
Good vitality	27	67.5

Pediatric palliative care profile	N	%
Classification according to the eligible conditions
Conditions for which cure is possible but may fail	9	16.1
Conditions requiring complex and prolonged treatment	2	3.6
Conditions where treatment is palliative from diagnosis	12	21.4
Severe, non-progressive disabling conditions	33	58.9
Type of pediatric palliative care
Exclusive care	16	28.6
Continuous care	40	71.4
Sector requesting the palliative care commission’s opinion
Special patient wards/blocks/units	22	39.3
Pediatric and neonatal intensive care units	34	60.7
Number of family conferences
1	50	89.3
2	6	10.7
Participation in the family conference
Attending physician	26	46.4
Other health professionals	1	1.7
Mother	53	94.6
Father	31	55.4
Sibling	4	7.1
Aunt/uncle	14	25
Grandparents	9	16.1
Others	6	10.7
Child’s outcome
Discharge/transfer	28	41.1
Death	33	58.9

Variables	Death		p
Variables	No	Yes	p
Type of disease
Respiratory tract diseases
Yes	1 (25)	3 (70)	0.498*
No	22 (42.3)	30 (57.7)	0.498*
Diseases of the circulatory system
Yes	3 (16.7)	15 (93.3)	0.011*
No	20 (52.6)	18 (47.4)	0.011*
Nervous system diseases
Yes	17 (53.1)	15 (46.9)	0.034*
No	6 (25)	18 (75)	0.034*
Diseases of the digestive system
Yes	1 (25)	3 (75)	0.498*
No	22 (42.3)	30 (57.7)	0.498*
Congenital malformations, deformities, and chromosomal anomalies
Yes	6 (27.3)	16 (72.7)	0.091*
No	17 (50)	17 (50)	0.091*
Use of health device
Nutritional support device
Yes	16 (48.5)	17 (51.5)	0.177*
No	7 (30.4)	16 (69.6)	0.177*
Breathing support device
Yes	8 (24.2)	25 (75.8)	0.002*
No	15 (65.2)	8 (34.8)	0.002*
Mechanical ventilation
Yes	7 (12.5)	23 (74.1)	0.026*
No	16 (55.2)	13 (44.8)	0.026*
Characteristics of pediatric palliative care
Requesting sector
Nursery	14 (63.6)	6 (36.4)	0.006*
Pediatric intensive care unit	9 (26.5)	25 (73.5)	0.006*
Type of pediatric palliative care
Exclusive	3 (18.8)	13 (81.3)	0.032*
Continued	20 (50)	20 (50)	0.032*

Brasil