VERA HERMINA KALIKA KOCH
Projetos de Pesquisa
Unidades Organizacionais
Instituto da Criança, Hospital das Clínicas, Faculdade de Medicina
LIM/36 - Laboratório de Pediatria Clínica, Hospital das Clínicas, Faculdade de Medicina - Líder
LIM/36 - Laboratório de Pediatria Clínica, Hospital das Clínicas, Faculdade de Medicina - Líder
5 resultados
Resultados de Busca
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- Difficulties in the diagnosis and treatment of rare diseases according to the perceptions of patients, relatives and health care professionals(2018) LOPES, Marcos Thomazin; KOCH, Vera Hermina; SARRUBBI-JUNIOR, Vicente; GALLO, Paulo Rogerio; CARNEIRO-SAMPAIO, MagdaOBJECTIVES: The aim of this study is to present a survey of vulnerabilities and to suggest approaches for the treatment of rare diseases according to the perceptions of a group of affected individuals, patient association representatives and health care professionals. METHODS: The focus group technique was used in interviews with patients and primary caregivers, patient support groups/non-governmental organizations, primary health care professionals and physician specialists. RESULTS: The transcript analysis focused on thematic units, which were tailored to each group and allowed comparisons in search of concordant views. Unanimity was observed in relation to the physical, emotional and social damage to the life standards of the affected individuals and their families as a result of illness. The Brazilian health system was unanimously classified as inadequate to respond to the needs of patients with rare diseases, and this inadequacy led to unpleasant experiences, such as the seemingly endless referrals among health services to reach a final diagnosis and develop a treatment plan. CONCLUSIONS: The complex set of health system requirements necessary to support the care of patients with rare diseases represents an obstacle to successfully meeting the needs of patients and their families. Therefore, it is important to develop specific public policies to create referral services, guarantee access to appropriate therapeutic modalities and incorporate technologies that promote research for developing new, affordable therapies.
- Health-related quality of life of children and adolescents with CKD stages 4-5 and their caregivers(2014) LOPES, Marcos; FERRARO, Alexandre; KOCH, Vera H.Renal replacement therapies may affect the quality of life of patients and their primary caregivers (PC). This study describes the perception of health-related quality of life (HRQoL) of children/adolescents with CKD stages 4-5, as well as of their PC (n = 64), in comparison to healthy peers and their PC (n = 129), respectively, based on the Peds QL (TM) 4.0 and Short Form-36 (SF-36) questionnaires and selected biomarkers. Patients reported a deleterious impact on physical capacity and on social and school activities. A negative influence on emotional aspects was reported by older patients, but not by their PC. Hemodialysis, followed by peritoneal dialysis, had a more negative impact on patients' physical functioning domain. PC HRQol proxy reports differed from those of their children, especially in older patients. PC of both groups presented similar SF-36 scores. An association was demonstrated between the magnitude of treatment target inadequacies, lower specific dominion scores in the patients/PC proxy reports and PC SF-36 general health scores. The HRQoL of patients with CKD stages 4-5 is negatively affected to different degrees depending on age and treatment modality. The results suggest an association between worsening HRQoL parameters and inadequate control of recognized therapeutic CKD treatment targets.
- Quality of life of pediatric patients with lower urinary tract dysfunction and their caregivers(2011) LOPES, Marcos; FERRARO, Alexandre; DORIA FILHO, Ulysses; KUCKZINSKI, Evelyn; KOCH, Vera H.The interest in quality of life (QoL) studies has increased as they are useful instruments to evaluate and compare medical care delivery and the impact of health interventions. The perception of QoL differs among individuals. Its characterization is especially difficult in the pediatric age group as each developmental stage presents specific demands. The prevalence of congenital lower urinary dysfunction is high and their management changes the daily routine of the patients and their families. In a cross-sectional study, we evaluated the QoL of 28 children and adolescents with urinary malformations and their caregivers using the Autoquestionnaire Qualit, de Vie Enfant Imag, (AUQUEI) and Short-Form 36 (SF-36), respectively, and compared the results with 38 healthy control age-paired children/caregivers. Four questions were added to patients' questionnaire to evaluate issues related to their urological management. Our results show lower AUQUEI total scoring in the patients' group (p < 0.0213, Fisher's exact test), who also present problems in dealing with social aspects, such as being at classroom, manifest negative feelings in relation to diurnal urinary losses but seem to be well adapted to intermittent urethral catheterization. A tendency for worse QoL scores in the patients' group caregivers was detected in the SF-36 pain and physical limitation domains.
- Study of the association between generic and disease-specific quality of life and behavior problems in pediatric patients with chronic kidney disease stage 3 or higher and the quality of life and mental health of their primary caregivers(2021) ABRAO, Renata Oliveira; LOPES, Marcos; SILVA, Guilherme J. S.; FERRARO, Alexandre A.; KOCH, Vera H.Background Chronic kidney disease (CKD) can affect quality of life and mental health of patients and their primary caregivers (PCs) in different disease stages. Methods This prospective, cross-sectional, descriptive, comparative, and analytical study of patients with stage 3-5 CKD, aged 8-18 years, assesses the association between patients' general and disease-specific health-related quality of life (HRQOL) and behavioral problems and their PCs' QoL and mental health status. PedsQL 4.0, PedsQL ESRD, CBCL, and YSR questionnaires were used to evaluate 80 patients while their PCs were assessed by SF-36 and MINI questionnaires. The study participants were divided into three groups: G1: stage 3-4 CKD, G2: peritoneal dialysis and hemodialysis, and G3: kidney transplantation. Results Lower indexes in PedsQL 4.0 and PedsQL ESRD were demonstrated in G2 patients. No deviant internalizing and/or externalizing conducts were shown by the CBCL questionnaire while the YSR questionnaire demonstrated significant differences in all domains with higher scores in G2 patients without reaching clinical range for individual syndromes. G3 PCs presented the lowest SF-36 scores and the highest occurrence of psychiatric diagnoses, according to MINI, when compared to other PCs. Parallelism was found between scores of PedsQL 4.0 and PedsQL ESRD with tendency to higher scores in the PC's view compared to the patient's view. Conclusions CKD affects HRQOL of patients and their PCs, as well as patients' behavior problems and their PCs' mental health. PCs' perceptions of patients' QOL and behavioral problems may be related to their mental health status and QOL self-perceptions.
- Confiabilidade da tradução da versão brasileira do questionário PedsQL - DREA para avaliação da qualidade de vida de crianças e adolescentes(2015) LOPES, Marcos Thomazin; FERRARO, Alexandre Archanjo; KOCH, Vera Hermina KalikaAbstract Objective: To evaluate the reliability of the translation and cultural adaptation of the Pediatric Quality of Life Inventory (PedsQLTM) - End Stage Renal Disease (ESRD) - version 3.0 - children/adolescents and parents reports in Brazilian children with ESRD. Methods: A group of 24 children and adolescents with ESRD, followed at Unidade de Nefrologia Pediátrica do Instituto da Criança - HCFMUSP and 32 primary caregivers were interviewed according to the me methodology proposed by the creator of the original questionnaire. Results: Statistical analysis using Cronbach's alpha resulted in values between 0.39 and 0.89 for all domains in initial statistical analysis. The domains that presented values lower than 0.5 were recalculated by age group, resulting in higher Cronbach's alpha values demonstrating the influence of the age in the perception of quality of life in ESRD patients. The overall rating of Cronbach's alpha values resulted in values of 0.81 and 0.71 in patients and PC reports, respectively, demonstrating good internal consistency. Conclusions: Ours results show that the Brazilian version of the questionnaires is valid, reliable and useful for measure HRQoL of children and adolescents ESRD, according to patients and PC reports.