Functioning and Disability Profile of Children with Microcephaly Associated with Congenital Zika Virus Infection
Abstract
:1. Introduction
2. Methods
2.1. Participants and Procedures
2.2. Assessment Measures
2.3. Translating Clinical Information and Standardized Assessment into the ICF Qualifiers
- The category s110 (structure of brain) was determined considering the results of imaging exams (Nuclear Magnetic Resonance, Computed Tomography or Transfontanel Ultrasonography). For example, Computed Tomography demonstrating multiple calcifications at the cortical-white matter, predominating in temporal lobes, the qualifier 3 was assigned.
- The category b280 (sensation of pain) was evaluated using the Visual Analog Scale (VAS) by the question. When the answer was 9 or 10 at VAS, the qualifier 4 was assigned.
- The category d710 (Basic interpersonal interactions) was captured by the PEDI, using the Social function area, items F and G, interactive social game and interaction with friends, respectively. When the answer was 0, the qualifier 4 was assigned.
- The category e120 (Products and technology for personal indoor and outdoor mobility and transportation) was assessed by a self-developed question: “Does the child need assistive devices to help in locomotion? How much does this help or hinder the child’s functioning?” In order to translate this information into the ICF language, firstly, the caregiver stated if the assistive device was considered a facilitator or a barrier. Secondly, the caregiver’s perspective on how much this environmental factor influenced the child’s functioning was captured using the study visual response card (Figure S2). The caregiver’s response was mapped into the ICF qualifier (facilitator or barrier).
2.4. Ethical Principles
2.5. Statistical Analysis
3. Results
4. Discussion
5. Conclusions
Supplementary Materials
Author Contributions
Conflicts of Interest
References
- Ministério da Saúde. Secretaria de Atenção à Saúde. Protocolo de Atenção à Saúde e Resposta à Ocorrência de Microcefalia; [Recurso Eletrônico]/Ministério da Saúde, Secretaria de Atenção à Saúde; Ministério da Saúde: Brasília, Brasil, 2016. (In Portuguese) [Google Scholar]
- Oliveira, K.W.; Cortez-Escalante, J.; De Oliveira, W.T.G.H.; Do Carmo, G.M.I.; Henriques, C.M.P.; Coelho, G.E.; De França, G.V.A. Increase in Reported Prevalence of Microcephaly in Infants Born to Women Living in Areas with Confirmed Zika Virus Transmission During the First Trimester of Pregnancy—Brazil. MMWR 2015, 65, 242–247. [Google Scholar]
- Secretaria de Vigilância em Saúde/Ministério da Saúde. Informe Epidemiológico Nº 29—Semana Epidemiológica (Se) 22/2016 (29/05 A 04/06/2016). Monitoramento dos Casos de Microcefalia no Brasil; 2017. Available online: http://combateaedes.saude.gov.br/images/boletins-epidemiologicos/informe_microcefalia_epidemiologico29.pdf (accessed on 20 May 2017). (In Portuguese)
- Ministério da Saúde. Nova Técnica: Brasil Adota Recomendação da OMS Para Microcefalia. 2016. Available online: http://portalsaude.saude.gov.br/index.php/cidadao/principal/agenciasaude/22553-brasil-adota-recomendacao-da-oms-e-reduz-medida-para-microcefalia (accessed on 12 June 2017). (In Portuguese)
- Leyser, M.; Olaf, K.; Mattaa, A.; Vasconcelosa, M.; Nascimento, O. The International Classification of Functioning Framework in Zika-Related Disabilities. J. Paediatr. Neurol. 2016, 20, 946–947. [Google Scholar] [CrossRef] [PubMed]
- Banks, L.M.; Kuper, H.; Polack, S. Poverty and disability in low- and middleincome countries: A systematic review. PLoS ONE 2017, 12, e0189996. [Google Scholar] [CrossRef] [PubMed]
- Jerome, E.; Bickenbach, J.E.; Cieza, A.; Sabariego, C. Disability and Public Health. Int. J. Environ. Res. Public Health 2016, 13, 123. [Google Scholar]
- Teixeira, M.; Costa, M.; Oliveira, W.; Nunes, M.; Rodrigues, L. The Epidemic of Zika Virus–Related Microcephaly in Brazil: Detection, Control, Etiology, and Future Scenarios. Am. J. Public Health 2016, 106, 601–605. [Google Scholar] [CrossRef] [PubMed]
- WHO (World Health Organization). International Classification of Functioning Disability and Health; World Health Organization: Geneva, Switzerland, 2001. [Google Scholar]
- Granlund, M. Participation—Challenges in conceptualization, measurement and intervention. Child Care Health Dev. 2013, 39, 470–473. [Google Scholar] [CrossRef] [PubMed]
- Rosenbaum, P. The importance of context: What are our assumptions about childhood disability? Dev. Med. Child Neurol. 2015, 57, 1084. [Google Scholar] [CrossRef] [PubMed]
- Schiariti, V.; Selb, M.; Cieza, A.; O’Donnell, M. International Classification of Functioning, Disability and Health Core Sets for children and youth with cerebral palsy: A consensus meeting. Dev. Med. Child Neurol. 2014, 57, 149–158. [Google Scholar] [CrossRef] [PubMed]
- Trabacca, A.; Russo, L.; Losito, L.; Rinaldis, M.; Moro, G.; Cacudi, M.; Gennaro, L. The ICF-CY Perspective on the Neurorehabilitation of Cerebral Palsy: A Single Case Study. J. Child Neurol. 2012, 27, 183–190. [Google Scholar] [CrossRef] [PubMed]
- Schiariti, V.; Tatla, S.; Sauve, K.; O’Donnell, M. Toolbox of multiple-item measures aligning with the ICF Core Sets for children and youth with Cerebral Palsy. Eur. J. Paediatr. Neurol. 2017, 21, 252–263. [Google Scholar] [CrossRef] [PubMed]
- Bastos, M.; D’Avila, P.; Umpierre, N.; Faccini, S.; Gonçalves, R.; Harzheim, E. Microcephaly and Zika Virus: Clinical features and associations. Rev. Bras. Med. Fam. Comunidade 2016, 11, 1–10. [Google Scholar]
- Van der Linden, V. Description of 13 infants born during October 2015–January 2016 with congenital Zika virus infection without microcephaly at birth—Brazil. MMWR 2016, 65, 1343–1348. [Google Scholar] [CrossRef] [PubMed]
- Schiarit, V.; Tatla, S.; Dunn, A.; Sauve, K.; O’Donnell, M. ICF Educational e-Tool. Available online: http://learn.phsa.ca/shhc/icf/story_html5.html (accessed on 10 January 2017).
- ICF Research Branch. ICF-Based Documentation Form. Available online: https://www.icf-core-sets.org/ (accessed on 5 December 2017).
- McAnuff, J.; Colver, A.; Rapley, T.; Kolehmainen, N. Improving health in children with disabilities: An intervention-development study to support participation in leisure in 8–12 year old with communication and mobility limitations. Trials 2015, 16, P5. [Google Scholar] [CrossRef]
- Oliveira, R.; Caldas, C.; Riberto, M. Application of the ICF-CY Brief Core Set for cerebral palsy on a school age child. Acta Fisiatr. 2016, 23, 46–50. [Google Scholar] [CrossRef]
- Satterfield-Nash, A.; Kotzky, K.; Allen, J.; Bertolli, J.; Moore, A.; Pereira, I.; Pessoa, A.; Melo, F. Health and Development at Age 19–24 Months of 19 Children Who Were Born with Microcephaly and Laboratory Evidence of Congenital Zika Virus Infection During the 2015 Zika Virus Outbreak—Brazil. MMWR 2017, 66, 1347. [Google Scholar] [PubMed]
- Almasri, N.A.; An, M.; Palisano, R.J. Parents’ Perception of Receiving Family-Centered Care for Their Children with Physical Disabilities: A Meta-Analysis. Phys. Occup. Ther. Pediatr. 2017, 28, 1–17. [Google Scholar] [CrossRef] [PubMed]
- Ketelaar, M.; Bogossian, A.; Saini, M.; Visser-Meily, A.; Lach, L. Assessment of the family environment in pediatric neurodisability: A state-of-the-art review. Dev. Med. Child Neurol. 2017, 59, 259–269. [Google Scholar] [CrossRef] [PubMed]
- Jones, M.A.; McEwen, I.R.; Neas, B.R. Effects of power wheelchairs on the development and function of young children with severe motor impairments. Pediatr. Phys. Ther. 2012, 24, 131–140. [Google Scholar] [CrossRef] [PubMed]
- Guerette, P.; Furumasu, J.; Tefft, D. The positive effects of early powered mobility on children’s psychosocial and play skills. Assist. Technol. 2013, 25, 39–48. [Google Scholar] [CrossRef] [PubMed]
- Decreto nº 7612, de 17 de Novembro de 2011. Institui o Plano Nacional dos Direitos da Pessoa com Deficiência—Plano Viver sem Limite; Diário Oficial da União, Poder Executivo: Brasília, Brasil, 2011. (In Portuguese)
- Poirot, I.; Laudy, V.; Rabilloud, M.; Roche, S.; Ginhoux, T.; Kassaï, B.; Vuillerot, C. Prevalence of pain in 240 non-ambulatory children with severe cerebral palsy. Ann. Phys. Rehabilit. Med. 2017, 60, 371–375. [Google Scholar] [CrossRef] [PubMed]
- Warlow, T.A.; Hain, R.D. ‘Total Pain’ in Children with Severe Neurological Impairment. Children 2018, 18, 13. [Google Scholar] [CrossRef] [PubMed]
- Silva, A.; Ganz, S.; da Silva Sousa, P.; Doriqui, J.; Ribeiro, R.; Branco, D.; de Sousa Queiroz, C.; Pacheco, D.; da Costa, R.; de Sousa Silva, F.; et al. Early growth and neurologic outcomes of infants with probable congenital Zika virus syndrome. Emerg. Infect. Dis. 2016, 22, 1953. [Google Scholar] [CrossRef] [PubMed]
- Alsem, W.; Ausems, F.; Verhoef, M.; Jongmans, J.; Meily-Visser, M.; Ketelaar, M. Information seeking by parents of children with physical disabilities: An exploratory qualitative study. Res. Dev. Disabil. 2017, 60, 125–134. [Google Scholar] [CrossRef] [PubMed]
- King, G.; Williams, L.; Hahn Goldberg, S. Family-oriented services in pediatric rehabilitation: A scoping review and framework to promote parent and family wellness. Child Care Health Dev. 2017, 43, 334–347. [Google Scholar] [CrossRef] [PubMed]
- Barbosa, M.; Balieiro, G.; Pettengill, M. Cuidado centrado na família no contexto da criança com deficiência e sua família: Uma análise reflexiva. Texto Contexto Enferm. 2012, 21, 194–199. [Google Scholar] [CrossRef]
- Rosenbaum, P. Family-centred research: What does it mean and can we do it? Dev. Med. Child Neurol. 2011, 53, 99–100. [Google Scholar] [CrossRef] [PubMed]
- King, G.; Chiarello, L. Family-centered care for children with cerebral palsy conceptual and practical considerations to advance care and practice. J. Child Neurol. 2014, 29, 1046–1054. [Google Scholar] [CrossRef] [PubMed]
- Armstrong, M.; Morris, C.; Abraham, C.; Tarrant, M. Interventions utilising contact with people with disabilities to improve children’s attitudes towards disability: A systematic review and meta-analysis. Disabil. Health J. 2017, 10, 11–22. [Google Scholar] [CrossRef] [PubMed]
- Rosenbaum, P. Improving atitudes towards children with disabilities in a school contexto. Dev. Med. Child Neurol. 2010, 52, 637–643. [Google Scholar] [CrossRef] [PubMed]
- Anaby, D.; Law, M.; Teplicky, R.; Turner, L. Focusing on the environment to improve youth participation: Experiences and perspectives of occupational therapists. Int. J. Environ. Res. Public Health 2015, 23, 13388–13398. [Google Scholar] [CrossRef] [PubMed]
- Anaby, D.; Mercerat, C.; Tremblay, S. Enhancing Youth Participation Using the PREP Intervention: Parents’ Perspectives. Int. J. Environ. Res. Public Health 2017, 2, 1005. [Google Scholar] [CrossRef] [PubMed]
- Badia, M.; Begona Orgaz, M.; Gomez-Vela, M.; Verdugo, M.; Ullan, A.; Longo, E. Do environmental barriers affect the parent-reported quality of life of children and adolescents with cerebral palsy? Res. Dev. Disabil. 2016, 16, 312–321. [Google Scholar] [CrossRef] [PubMed]
- King, G.; Rosenbaum, P.; King, S. Evaluating family-centred service using a measure of parents’ perceptions. Child Care Health Dev. 1997, 23, 47–62. [Google Scholar] [CrossRef] [PubMed]
- Di Marino, E.; Tremblay, S.; Khetani, M.; Anaby, D. The effect of child, family and environmental factors on the participation of young children with disabilities. Disabil. Health J. 2018, 11, 36–42. [Google Scholar] [CrossRef] [PubMed]
- Gladstone, M.; Abubakar, A.; Idro, R.; Langfitt, J.; Newton, C.R. Measuring neurodevelopment in low-resource settings. Lancet Child Adolesc. Health 2017, 1, 258–259. [Google Scholar] [CrossRef]
- Longo, E.; Galvão, É.R.; Ferreira, H.N.; Lindquist, A.R.; Shikako-Thomas, K. Knowledge translation in pediatric rehabilitation: Expanding access to scientific knowledge. Braz. J. Phys. Ther. 2017, 21, 389–390. [Google Scholar] [CrossRef] [PubMed]
- Mäenpää, H.; Autti-Rämö, I.; Varho, T.; Forsten, W.; Haataja, L. Multiprofessional evaluation in clinical practice: Establishing a core set of outcome measures for children with cerebral palsy. Dev. Med. Child Neurol. 2017, 59, 322–328. [Google Scholar] [CrossRef] [PubMed]
Characteristics of the Children (n = 34) | |
Sex | Male = 47.0% Female = 52.9% |
Age (months) | Mean = 21.2 ± 7.3 |
Height (cm) | 43.5 ± 8.3 |
Weight (grams) | 2773.1 ± 462.4 |
1′Apgar | 8.2 ± 1.0 |
5′Apgar | 9.0 ± 0.5 |
Score-Z (Head circumference) | 0.92 to −5.51 |
Use of ventilator support | Yes = 23.5% No = 76.5% |
Exclusive breastfeeding | Yes = 47.1% No = 52.9% |
Owns baby carriage or wheelchair | Yes = 55.9% No = 44.1% |
Characteristics of the Mothers (n = 34) | |
Age (years) | 27.0 ± 7.0 |
Location of residence | 100% urban zone |
Schooling | Complete elementary education = 17.6% Incomplete elementary education = 14.7% Complete secondary education = 47.1% Incomplete secondary education = 8.8% Incomplete university education = 11.8% |
Income | One minimum monthly salary = 64.7% Two to three minimum monthly salaries= 35.3% |
Number of pregnancies | 1 = 44.1% 2 = 35.3% 3 = 14.7% 4 = 5.9% |
Gestational age (weeks) | 37.7 ± 2.6 |
Type of delivery | Normal = 41.2% Cesarean = 58.8% |
Number of prenatal visits | 7.7 ± 2.9 |
Number of ultrasounds | 4.8 ± 2.2 |
Threatened miscarriage | Yes = 23.5% No = 76.5% |
Symptoms of ZIKV | Yes = 79.4% No = 20.6% |
Trimester of pregnancy when ZIKV symptoms emerged | None = 20.6% 1st = 47.1% 2nd = 17.6% 3rd = 14.7% |
Diagnosis of Zika virus infection during pregnancy | Yes = 67.6% No = 32.4% |
Category Functions | Qualifier 0 None Problem | Qualifier 1 Mild Problem | Qualifier 2 Moderate Problem | Qualifier 3 Severe Problem | Qualifier 4 Complete Problem | Qualifier 9 Not Applicable | |
b117 | Intellectual functions | 2.9 | 8.8 | - | 55.9 | 32.4 | - |
b134 | Sleep functions | 47.1 | 11.8 | 11.8 | 8.8 | 20.6 | - |
b167 | Mental functions of language | - | - | - | - | 100.0 | - |
b210 | Seeing functions | 32.4 | 14.7 | 17.6 | 29.4 | 5.9 | - |
b280 | Sensation of pain | 67.6 | 2.9 | 5.9 | 11.8 | 11.8 | - |
b710 | Mobility of joint functions | - | 8.8 | 14.7 | 64.7 | 11.8 | - |
b735 | Muscle tone functions | - | 5.9 | 5.9 | 76.5 | 11.8 | - |
b760 | Control of voluntary movement functions | - | 5.9 | 5.9 | 70.6 | 17.6 | - |
Category | Body Structures | Qualifier 0 None Problem | Qualifier 1 Mild Problem | Qualifier 2 Moderate Problem | Qualifier 3 Severe Problem | Qualifier 4 Complete Problem | Qualifier 9 Not Applicable |
s110 | Structure of brain | - | - | 55.9 | 44.1 | - | - |
Category | Activities/Participation | Qualifier 0 None Problem | Qualifier 1 Mild Problem | Qualifier 2 Moderate Problem | Qualifier 3 Severe Problem | Qualifier 4 Complete Problem | Qualifier 9 Not Applicable |
d415 | Maintaining a body position | - | 8.8 | 8.8 | 64.7 | 17.6 | - |
d440 | Fine hand use | - | - | - | 5.9 | 94.1 | - |
d450 | Walking | - | - | - | - | 70.6 | 29.4 |
d460 | Moving around in different locations | 2.9 | - | 11.8 | 17.6 | 67.6 | - |
d530 | Toileting | - | - | - | 23.5 | 47.1 | 29.4 |
d550 | Eating | 11.8 | 2.9 | 2.9 | 70.6 | 11.8 | - |
d710 | Basic interpersonal interactions | - | - | 2.9 | 55.9 | 41.2 | - |
d760 | Family relationships | 88.2 | 2.9 | 2.9 | 2.9 | 2.9 | - |
Category | Mild Barrier 1 | Moderate Barrier 2 | Severe Barrier 3 | Complete Barrier 4 | No Facilitator/No Barrier 0 | Mild Facilitator +1 | Moderate Facilitator +2 | Substancial Facilitator +3 | Complete Facilitator +4 | |
---|---|---|---|---|---|---|---|---|---|---|
e115 | Products and technology for personal use in daily living | 5.9 | - | 2.9 | 2.9 | 50.0 | 5.9 | 2.9 | 17.6 | 11.8 |
e120 | Products and technology for personal indoor and outdoor mobility and transportation | 2.9 | 20.6 | - | - | 35.3 | - | - | 8.8 | 32.4 |
e125 | Products and technology for communication | - | - | - | 8.8 | 76.5 | - | - | - | 14.7 |
e150 | Design, construction and building products and technology of buildings for public use | - | - | 5.9 | 14.7 | 32.4 | 2.9 | 2.9 | 8.8 | 32.4 |
e310 | Immediate Family | - | - | - | - | 5.9 | - | - | 5.9 | 85.3 |
e320 | Friends | - | - | - | - | 20.6 | - | - | 20.6 | 58.8 |
e460 | Societal attitudes | - | 2.9 | 20.6 | 41.2 | 35.3 | - | - | - | - |
e580 | Health services, systems and policies | - | - | - | 17.6 | - | - | - | 20.6 | 61.8 |
© 2018 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons.org/licenses/by/4.0/).
Share and Cite
Ferreira, H.N.C.; Schiariti, V.; Regalado, I.C.R.; Sousa, K.G.; Pereira, S.A.; Fechine, C.P.N.d.S.; Longo, E. Functioning and Disability Profile of Children with Microcephaly Associated with Congenital Zika Virus Infection. Int. J. Environ. Res. Public Health 2018, 15, 1107. https://doi.org/10.3390/ijerph15061107
Ferreira HNC, Schiariti V, Regalado ICR, Sousa KG, Pereira SA, Fechine CPNdS, Longo E. Functioning and Disability Profile of Children with Microcephaly Associated with Congenital Zika Virus Infection. International Journal of Environmental Research and Public Health. 2018; 15(6):1107. https://doi.org/10.3390/ijerph15061107
Chicago/Turabian StyleFerreira, Haryelle Náryma Confessor, Veronica Schiariti, Isabelly Cristina Rodrigues Regalado, Klayton Galante Sousa, Silvana Alves Pereira, Carla Patrícia Novaes dos Santos Fechine, and Egmar Longo. 2018. "Functioning and Disability Profile of Children with Microcephaly Associated with Congenital Zika Virus Infection" International Journal of Environmental Research and Public Health 15, no. 6: 1107. https://doi.org/10.3390/ijerph15061107
APA StyleFerreira, H. N. C., Schiariti, V., Regalado, I. C. R., Sousa, K. G., Pereira, S. A., Fechine, C. P. N. d. S., & Longo, E. (2018). Functioning and Disability Profile of Children with Microcephaly Associated with Congenital Zika Virus Infection. International Journal of Environmental Research and Public Health, 15(6), 1107. https://doi.org/10.3390/ijerph15061107