Quality of life in children with cystic fibrosis: individual and family aspects
DOI:
https://doi.org/10.47224/revistamaster.v8i15.421Keywords:
Cystic fibrosis, Quality of life, Child careAbstract
Cystic Fibrosis (CF) is a chronic disease that causes a series of systemic changes, which can directly interfere with the quality of life (QoL) in relation to the health of patients, their family members and their caregivers. Hence, this study aimed to seek consensus in the literature to support the health care of children with CF, focusing on knowledge about QoL of the patient-caregiver binomial. For this purpose, an Integrative Literature Review was developed through a search expression on Brazilian Virtual Health Library using two indexers. A total of 169 articles were found, of which 23 were analyzed for meeting the inclusion criteria. It was observed that the QoL of patients with CF varies according to sex and age, and it is influenced by social, contextual, and cultural issues. In addition, the perception of parents and caregivers about the children and adolescents’ QoL is different from that reported by patients, but this difference decreases as new positions are assumed in relation to life and due to increased anxiety about the treatment development as they are getting older. Thus, the qualification of health care must be guided by the understanding of the social determinants of health related to the context of each patient and caregiver. The applied Integrative Review methodology was useful in presenting a consensus on issues involving the QoL of patients with CF and their family perceptions, however more research is needed on the subject regarding the Brazilian reality, using specific questionnaires for CF.
Downloads
References
AIRES, Mariana T. et al. Cross-cultural adaptation and psychometric properties of the Brazilian-Portuguese version of the VSP-A (Vécu et Santé Perçue de l'Adolescent), a health-related quality of life (HRQoL) instrument for adolescents, in a healthy Brazilian population. BMC pediatrics, v. 11, n. 1, p. 1-14, 2011.
ARAÚJO, Renata Boldrin de et al. Translation, cultural adaptation to Brazil and validation of the venous leg ulcer quality of life questionnaire (VLU-QoL-Br). Revista da Associação Médica Brasileira, v. 60, p. 249-254, 2014.
ARRINGTON-SANDERS, Renata et al. Gender differences in health-related quality of life of adolescents with cystic fibrosis. Health and Quality of life Outcomes, v. 4, n. 1, p. 1-8, 2006.
BENEFIELD, Lazelle E. Implementing evidence-based practice in home care. Home healthcare now, v. 21, n. 12, p. 804-809, 2003.
BODNAR, Reka et al. Factors influencing quality of life and disease severity in Hungarian children and young adults with cystic fibrosis. Italian Journal of Pediatrics, v. 40, n. 1, p. 1-10, 2014.
BOON, Mieke et al. Use of a mobile application for self-management of pancreatic enzyme replacement therapy is associated with improved gastro-intestinal related quality of life in children with cystic fibrosis. Journal of Cystic Fibrosis, v. 19, n. 4, p. 562-568, 2020.
BOYLE, Michael P. Nonclassic cystic fibrosis and CFTR-related diseases. Current opinion in pulmonary medicine, v. 9, n. 6, p. 498-503, 2003.
BRASIL. Portaria SES-DF nº 1355, de 05 de dezembro de 2018. Protocolo de Atenção à Saúde: Linha de Cuidado de Saúde para o paciente com Fibrose Cística. 1. ed. Brasília: DODF, 18 jan. 2019. n. 13.
BREGNBALLE, V.; THASTUM, M.; SCHIØTZ, P. O. Psychosocial problems in children with cystic fibrosis. Acta Paediatrica, v. 96, n. 1, p. 58-61, 2007.
CHAN, Dylan K. et al. Sinonasal quality of life in children with cystic fibrosis. JAMA Otolaryngology–Head & Neck Surgery, v. 142, n. 8, p. 743-749, 2016.
CHENEY, Joyce et al. Health-related quality-of-life in children with cystic fibrosis aged 5-years and associations with health outcomes. Journal of Cystic Fibrosis, v. 19, n. 3, p. 483-491, 2020.
CHEVREUL, Karine et al. Social/economic costs and health-related quality of life in patients with cystic fibrosis in Europe. The European Journal of Health Economics, v. 17, n. 1, p. 7-18, 2016.
COHEN, Milena Antonelli et al. Avaliação da qualidade de vida de pacientes com fibrose cística por meio do Cystic Fibrosis Questionnaire. Jornal Brasileiro de Pneumologia, v. 37, p. 184-192, 2011.
DONADIO, Márcio VF et al. Bone mineral density, pulmonary function, chronological age, and age at diagnosis in children and adolescents with cystic fibrosis. Jornal de pediatria, v. 89, p. 151-157, 2013.
DRISCOLL, Kimberly A. et al. Application of dyadic data analysis in pediatric psychology: Cystic fibrosis health-related quality of life and anxiety in child–caregiver dyads. Journal of pediatric psychology, v. 37, n. 6, p. 605-611, 2012.
DRISCOLL, Kimberly A. et al. Relations between depressive and anxious symptoms and quality of life in caregivers of children with cystic fibrosis. Pediatric pulmonology, v. 44, n. 8, p. 784-792, 2009.
GROENEVELD, Iris F. et al. Health-related quality of life of Spanish children with cystic fibrosis. Quality of Life Research, v. 21, n. 10, p. 1837-1845, 2012.
GRUPO BRASILEIRO DE ESTUDOS DE FIBROSE CÍSTICA (GBEFC). Registro Brasileiro de Fibrose Cística (REBRAFC): relatório anual de 2018. Relatório Anual de 2018. 2018. Disponível em: http://portalgbefc.org.br/ckfinder/userfiles/files/REBRAFC_2018.pdf. Acesso em: 05 mar. 2022.
LOPES-PACHECO, Miquéias. CFTR modulators: the changing face of cystic fibrosis in the era of precision medicine. Frontiers in pharmacology, v. 10, p. 1662, 2020.
MENDES, Karina Dal Sasso; SILVEIRA, Renata Cristina de Campos Pereira; GALVÃO, Cristina Maria. Revisão integrativa: método de pesquisa para a incorporação de evidências na saúde e na enfermagem. Texto & contexto-enfermagem, v. 17, p. 758-764, 2008.
MODI, Avani C. et al. Changes in pediatric health-related quality of life in cystic fibrosis after IV antibiotic treatment for pulmonary exacerbations. Journal of clinical psychology in medical settings, v. 17, n. 1, p. 49-55, 2010.
ONG, Thida; RAMSEY, Bonnie W. Update in cystic fibrosis 2014. American journal of respiratory and critical care medicine, v. 192, n. 6, p. 669-675, 2015.
PIZZIGNACCO, Tainá Maués Pelúcio; LIMA, Regina Aparecida Garcia de. O processo de socialização de crianças e adolescentes com fibrose cística: subsídios para o cuidado de enfermagem. Revista Latino-Americana de Enfermagem, v. 14, p. 569-577, 2006.
QUITTNER, Alexandra L. et al. Determination of the minimal clinically important difference scores for the Cystic Fibrosis Questionnaire-Revised respiratory symptom scale in two populations of patients with cystic fibrosis and chronic Pseudomonas aeruginosa airway infection. Chest, v. 135, n. 6, p. 1610-1618, 2009.
RIBEIRO, Jose Dirceu; RIBEIRO, Maria ngela G. de O.; RIBEIRO, Antonio Fernando. Controvérsias na fibrose cística: do pediatra ao especialista. Jornal de pediatria, v. 78, p. 171-186, 2002.
ROZOV, Tatiana et al. Linguistic validation of cystic fibrosis quality of life questionnaires. Jornal de pediatria, v. 82, p. 151-156, 2006.
SANTANA, Nelbe Nesi et al. Factors associated to quality of life in children and adolescents with cystic fibrosis. Revista Paulista de Pediatria, v. 38, 2020.
SANTOS, Danielle Maria de Souza Serio dos et al. Cultural adaptation and initial psychometric properties of the DISABKIDS®–Cystic Fibrosis Module–Brazilian version. Revista da Escola de Enfermagem da USP, v. 47, p. 1311-1317, 2013.
SEIDL, Eliane Maria Fleury; ZANNON, Célia Maria Lana da Costa. Qualidade de vida e saúde: aspectos conceituais e metodológicos. Cadernos de saúde pública, v. 20, p. 580-588, 2004.
ŞENSES-DINÇ, Gülser et al. Psychiatric morbidity and quality of life in children and adolescents with cystic fibrosis. 2018.
SIMON, Stacey L. et al. Body satisfaction, nutritional adherence, and quality of life in youth with cystic fibrosis. Pediatric pulmonology, v. 46, n. 11, p. 1085-1092, 2011.
STOLTZ, David A.; MEYERHOLZ, David K.; WELSH, Michael J. Origins of cystic fibrosis lung disease. New England Journal of Medicine, v. 372, n. 4, p. 351-362, 2015.
THOMAS, Clare et al. Quality-of-life in children and adolescents with cystic fibrosis managed in both regional outreach and cystic fibrosis center settings in Queensland. The Journal of pediatrics, v. 148, n. 4, p. 508-516. e1, 2006.
TIBOSCH, Marijke M. et al. How about your peers? Cystic fibrosis questionnaire data from healthy children and adolescents. BMC pediatrics, v. 11, n. 1, p. 1-8, 2011.
TLUCZEK, Audrey et al. Health-related quality of life in children and adolescents with cystic fibrosis: Convergent validity with parent reports and objective measures of pulmonary health. Journal of developmental and behavioral pediatrics: JDBP, v. 34, n. 4, p. 252, 2013.
TLUCZEK, Audrey et al. Relationships among health-related quality of life, pulmonary health, and newborn screening for cystic fibrosis. Chest, v. 140, n. 1, p. 170-177, 2011.
Downloads
Published
How to Cite
Issue
Section
Categories
License
Copyright (c) 2023 Revista Master - Ensino, Pesquisa e Extensão
![Creative Commons License](http://i.creativecommons.org/l/by-nc/4.0/88x31.png)
This work is licensed under a Creative Commons Attribution-NonCommercial 4.0 International License.
Política para Periódicos de Acesso Livre
Autores que publicam nesta revista concordam com os seguintes termos:
a) A licença desses direitos autorais abrange o direito exclusivo da Revista Master - Ensino, Pesquisa e Extensão para reproduzir, publicar e distribuir o artigo,
nacional e internacionalmente, incluindo reimpressões, traduções, reproduções fotográficas, microformas, formulários eletrônicos (offline, on-line) ou qualquer outra reprodução de natureza similar.
b) O (s) autor (es) aprovam que o manuscrito não pode ser retirado ou reenviado para qualquer outro Jornal/Revista enquanto a avaliação pelos pares estiver em andamento. Após aprovado o manuscrito, um autor pode auto-arquivar uma versão de seu artigo em seu próprio site e/ou em seu repositório institucional.
c) O (s) autor (es) declaram que são integralmente responsáveis pela totalidade do conteúdo da contribuição e que a Revista Master - Ensino, Pesquisa e Extensão e o corpo editorial da Revista Científica do estão expressamente isentos de qualquer responsabilidade sobre o conteúdo do artigo, métodos, técnicas e resultados de sua pesquisa, tendo, assim, finalidade meramente informativa e educativa.
d) Autores têm autorização para assumir contratos adicionais separadamente, para distribuição não-exclusiva da versão do trabalho publicada nesta revista (ex.: publicar em repositório institucional ou como capítulo de livro), com reconhecimento de autoria e publicação inicial nesta revista.