Validação do pediatric quality of life inventory - stem cell transplant module para a população brasileira

• Ano de defesa: 2023
• Autor(a) principal: Garcia, Luara Sandrin Engracia
• Orientador(a): Pfeifer, Luzia Iara
• Tipo de documento: Dissertação
• Tipo de acesso: Acesso aberto
• Idioma: por
• Instituição de defesa: Universidade Federal de São Carlos; Câmpus São Carlos
• Programa de Pós-Graduação: Programa de Pós-Graduação em Terapia Ocupacional - PPGTO
• Palavras-chave em Português: Transplante de células tronco hematopoiéticas; Transplante de medula óssea; Qualidade de vida; Terapia ocupacional
• Palavras-chave em Inglês: Hematopoietic stem cell transplantation; Bone marrow transplant; Quality of life; Occupational therapy
• Área do conhecimento CNPq: CIENCIAS DA SAUDE::FISIOTERAPIA E TERAPIA OCUPACIONAL
• Link de acesso: https://repositorio.ufscar.br/handle/20.500.14289/17923

Introduction: Hematopoietic stem cell transplantation (HSCT) is a complex medical procedure, whose basic principle is to destroy the diseased bone marrow and transfer normal progenitor cells to the individual, which can be autologous, syngeneic or allogeneic (related, unrelated or haploidentical). During treatment, patients and their families go through critical stages, where pain and Graft-versus-Host Disease (GVHD) are commonly described complications, which can lead to negative changes in their quality of life (QOL). Objective: The present study aims to validate the PedsQL Stem Cell Transplant Module (PedsQL–SCTM) for use with the Brazilian population. Method: Methodological, cross-sectional, non-experimental study of quantitative analysis. Forty patients aged between 2 and 18 years and their guardians, representatives of HSCT between 2016 and 2022, undergoing outpatient follow-up, participated in this research. Data analysis in the validation phase was carried out by measuring reliability, reproducibility and internal consistency and factor analysis of the instrument, submitted by Cronbach's Alpha Statistics Test and Intraclass Correlation Coefficient (ICC) with Kaiser's aid. Concurrent validity was measured between the PedsQL-SCTM (quality of life) and the Pediatric Assessment of Disability Inventory - Computer Adaptive Test (PEDI-CAT) (functionality). Results: Inter-rater reliability and test-retest reliability demonstrated excellent agreement (ICC = 1,000 (p <0.000)). Internal consistency was divided into satisfactory and unsatisfactory results, with Cronbach's alpha coefficient of the total score being 0.851, indicating high reliability. As for the confirmatory factor analysis, 70% of the items had adequate factor loading. Regarding concurrent validity, ICC values below 0.4 indicate that there was no correlation between the PedsQL-SCTM and the PEDI-CAT, indicating that both assess different constructs. The average scores of the questionnaires answered by the age groups from 8 to 18 years were 76.65. As for the questionnaire answered by those responsible, comprising the age group from 2 to 7 years, the average score was 76.73. Conclusion: Statistical analysis indicated satisfactory results, confirming that the instrument has the necessary psychometric properties for reliability and validity and, therefore, is applicable to Brazilian children/adolescents undergoing HSCT, as well as their guardians.