Health-related quality of life in children with cerebral palsy associated with congenital Zika infection

Marques, Fernanda Jordão Pinto; Carvalho, Alessandra Lemos de; Borigato, Eliana Valverde Magro; Oliveira, Luiz Felipe Vieira de; Duarte, Lenamaris Mendes Rocha; Silva, Adriana Goncalves da; Amarante, Claret Luiz Dias; Pereira, Laura Jácome de Melo; Tavares, Elise Ferreira; Costa, Lilian Gleice de Sena da; Alcântara, Carolina Alves Rezende; Salinas, Andrea Nakamura; Pinto, Fernanda de Lourdes da Cunha; Alcântara, Gerliane Carvalho de; Utsch, Fabiana; Silva, Cinthia Ramos Diniz; Reis, Dirlene Araujo dos; Bessa, Wilerson Marques; Dutra, Rafaela Christine; Ventura, Paloma; Oliveira, Tatiana Souza

doi:10.1590/1984-0462/2023/41/2022016

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Brasil

Revista Paulista de Pediatria

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Original Article • Rev. paul. pediatr. 41 • 2023 • https://doi.org/10.1590/1984-0462/2023/41/2022016 copy

Health-related quality of life in children with cerebral palsy associated with congenital Zika infection

Qualidade de vida relacionada à saúde em crianças com paralisia cerebral associada a síndrome da Zika congênita

Authorship SCIMAGO INSTITUTIONS RANKINGS

Abstract

Objective:

To describe the health-related quality of life (QOL) in children with cerebral palsy (CP) associated with congenital Zika infection.

Methods:

Cross-sectional study of a consecutive series of children, followed in a referral multicentric rehabilitation network in Brazil. We invited the caregivers to respond to the Brazilian version of the Caregiver Priorities & Child Health Index of Life with Disabilities (CPCHILD^TM) questionnaire. Statistical analysis was performed with the Statistical Package for the Social Sciences (SPSS) 26.0™. We used absolute and relative frequencies for categorical variables and mean and standard deviation for continuous variables.

Results:

The sample consisted of 193 children, at mean age of 50.3±7.6 months. We observed a predominance of children with cerebral palsy (CP) with Gross Motor Function Classification System (GMFCS) level V (93.7%). Epilepsy (88.4%) was the most common comorbidity. CPCHILD^TM mean scores were activities of daily living (ADL)/personal care 43.2±12.6; positioning, transferring and mobility 33.7±16.5; comfort and emotions 84.4±15.2; communication and social interaction (CoSI) 48.2±24.3; health 70.9±17.1; and overall quality of life (OQOL) 72.1±17.1. Total score was 54.8±11.3.

Conclusions:

Among children with cerebral palsy (CP) related to congenital Zika syndrome, the quality of life (QOL) scores were very similar to other populations with cerebral palsy (CP). The activities of positioning, transferring and mobility had the greatest impact on health-related quality of life (QOL). Rehabilitation strategies and public policies should prioritize aspects related to mobility for this population.

Keywords:
Zika virus infection; Cerebral palsy; Quality of life

CPCHILD item	Standard score per item (%)
Section 1: personal care/activities of daily living (difficulty/level of assistance in the past 2 weeks)
1. eating/drinking or being fed	46.3
2. maintaining oral hygiene	38.0
3. bathing/washing	40.2
4. toileting activities	33.9
5. changing diapers/underwear	47.2
6. putting on/taking off upper body clothing	43.6
7. putting on/taking off lower body clothing	47.5
8. putting on/wearing footwear	46.6
9. hair care	45.4
Section 2: positioning, transferring & mobility (difficulty/level of assistance in the past 2 weeks)
10. getting in and out of bed	37.3
11. transferring into/out of a wheelchair/chair	40.8
12. sitting in a wheelchair/chair	41.3
13. standing for exercise/transfers	15.3
14. moving about in the home	33.4
15. moving about outdoors	28.8
16. getting in and out of a motor vehicle	33.1
17. visiting public places	39.6

CPCHILD item	Standard score per item (%)
Section 3: comfort & emotions (pain or discomfort in the past 2 weeks)
18. while drinking/eating or being fed	85.9
19. during toileting	78.0
20. while dressing/undressing	89.1
21. during transfers or position changes	89.0
22. while seated	84.8
23. while lying down in bed	86.4
24. that disturbed your child’s sleep	79.5
25. how often the child was agitated, upset or angry	76.2
26. how often the child was unhappy or sad	91.4
Section 4: communication & social interaction (difficulty in each of these activities in the past 2 weeks)
27. understanding you	59.2
28. being understood by you	62.3
29. communicating with those who don’t know your child well	31.2
30. playing alone	32.1
31. playing with others	51.5
32. attending school/childcare	46.8
33. participating in recreational activities	54.4
Section 5: health (in the past 2 weeks)
34. how many visits to the doctor’s/hospital*	91.2
35. rate your child’s overall health	69.8
36. medications^†	51.6
Section 6: your child’s overall quality of life
37. rate your child’s overall quality of life	72.1

Standardized score (per domain)	Mean (%)	Standard deviation
1. Activities of daily living/personal care	43.2	12.6
2. Positioning, transferring and mobility	33.1	13.8
3. Comfort and emotions	84.4	15.2
4. Communication and social interaction	46.8	19.4
5. Health	70.9	17.1
6. Overall quality of life	72.1	17.1
Standardized score total survey	54.4	10.5

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[1] *Corresponding author. E-mail: fernandajpmarques@gmail.com (F. J. P. Marques)