Avaliac?o da concord?ncia entre o autorrelato da crian?a e do proxy na avalia??o da qualidade de vida ? sa?de em pacientes com bronquiolite obliterante

• Main Author: Arend, M?rcia Helena Rodrigues de Freitas
• Other Authors: Mattiello, Rita
• Format: Others
• Language: Portuguese
• Published: Pontif?cia Universidade Cat?lica do Rio Grande do Sul 2018
• Subjects: Qualidade de Vida Relacionada ? Sa?de; Bronquiolite Obliterante; Crian?as; Health-Related Quality of Life; Bronchiolitis Obliterans; Children; CIENCIAS DA SAUDE::MEDICINA
• Online Access: http://tede2.pucrs.br/tede2/handle/tede/8294

Submitted by PPG Pediatria e Sa?de da Crian?a ([e-mail]) on 2018-09-25T11:25:50Z No. of bitstreams: 1 Disserta??o Marcia 1009.pdf: 1390337 bytes, checksum: ffbfe58c2bec3b4163c252680f70cb88 (MD5) === Approved for entry into archive by Sheila Dias ([e-mail]) on 2018-09-27T11:21:25Z (GMT) No. of bitstreams: 1 Disserta??o Marcia 1009.pdf: 1390337 bytes, checksum: ffbfe58c2bec3b4163c252680f70cb88 (MD5) === Made available in DSpace on 2018-09-27T11:25:52Z (GMT). No. of bitstreams: 1 Disserta??o Marcia 1009.pdf: 1390337 bytes, checksum: ffbfe58c2bec3b4163c252680f70cb88 (MD5) Previous issue date: 2018-06-25 === Introduction: Post-Infectious Obliterating Bronchiolitis is a chronic obstructive pulmonary disease that affects the distal airways. Pneumopathy is rare and severe, does not have a definite cause, numerous causes lead to the picture of a secondary insult. Subjective measures such as health-related quality of life (HRQoL) are being increasingly used to measure the impact of Bronchiolitis Obliterans on children's lives. Currently, there is a paucity of studies that have evaluated health-related quality of life in patients with Post-Infectious Bronchiolitis Obliterating. Objective: To assess the level of agreement in health-related quality of life (HRQoL) between children with Post Infectious Bronchiolitis Obliterans (PIBOPI) and their parent (so-called proxy). Methodology: Participants aged between 8-17, which had been previously diagnosed with PIBOPI, were regularly followed up at a pediatric pulmonology outpatient clinic. Parents or legal guardians (caregivers) of these patients were also recruited for they. A validated and age-appropriate version of the Pediatric Quality of Life Inventory 4.0 (PedsQL) was used for the assessment of HRQoL. Caregivers completed the corresponding proxy versions of the questionnaire. The correlation between self and proxy reports of HRQoL was determined by intra-class correlation coefficient (ICC), and dependent t-tests. Results: The majority of the participants were males (79.4%), and the average age was 11.8 years. Intra-class correlations between each of the PedsQL domains and the total score were all lower than 0.6, with a range between 0.267 (poor) and 0.530 (fair). When the means of each domain and the total score of the questionnaires were compared, caregivers were observed to score significantly lower HRQoL than children, with the exception of the social domain in which the difference was not significant. However, the differences in score exceeded the critical threshold difference of 4 points in all other domains. Conclusions: Proxys from patients with Post Infectious Bronchiolitis Obliterans tend to report lower quality of life scores than patients themselves. === Introdu??o: Bronquiolite Obliterante P?s-Infecciosa ? uma doen?a pulmonar obstrutiva cr?nica, que afeta as vias a?reas distais. A doen?a ? rara e grave, n?o tem uma causa definida, in?meras causas levam ao quadro de um insulto secund?rio. Medidas subjetivas como qualidade de vida relacionada ? sa?de (QVRS),est?o sendo cada vez mais utilizado para aferir o impacto da Bronquiolite Obliterante na vida das crian?as. Atualmente, existe uma escassez de estudos que tenham avaliado a qualidade de vida relacionada ? sa?de em pacientes com Bronquiolite Obliterante P?s-infecciosa. Objetivo: Avaliar o n?vel de concord?ncia da Qualidade de Vida Relacionada ? Sa?de (QVRS) entre crian?as com Bronquiolite Obliterante P?s-infecciosa (BOPI) e seus pais (Proxy). M?todos: Participantes com idade entre 8-17 anos, previamente diagnosticados com BOPI, foram acompanhados regularmente em ambulat?rios especializados de pneumologia pedi?trica. Os pais ou os representantes legais (cuidadores) destes pacientes tamb?m foram recrutados para o estudo. Para avalia??o da QVRS foi aplicada a vers?o validada do instrumento Pediatric Quality of Life Inventory 4.0 (PedsQl). Os cuidadores responderam a vers?o correspondente do question?rio para o Proxy. A correla??o dos relatos da QVRS entre as crian?as e seus Proxy foi determinado mediante o coeficiente de correla??o intraclasse (CCI) e teste t para a amostras independentes. Resultados: A maioria dos participantes era do sexo masculino, (79,4%), a m?dia de idade foi de 11,8 anos. Os CCI entre cada um dos dom?nios do PedsQL, bem como o escore total foram inferiores a 0,6, variando entre 0,267 (pobre) e 0,530 (satisfat?ria). As m?dias dos dom?nios e do escore total dos question?rios respondidos pelos pacientes e aquelas relatadas pelos respons?veis comparadas demonstraram que o escore dos cuidadores foi significativamente menor do que o das crian?as, com exce??o apenas para o dom?nio social, cuja diferen?a n?o foi significativa. Todavia, as diferen?as ultrapassaram a diferen?a m?nima importante de 4 pontos no escore para todos os dom?nios. Conclus?o: Os Proxys dos pacientes com Bronquiolite Obliternante P?s-infecciosa tendem a relatar menores escores de qualidade de vida que os pr?prios pacientes.