JULIANA CAIRES DE OLIVEIRA ACHILI FERREIRA
Projetos de Pesquisa
Unidades Organizacionais
Instituto da Criança, Hospital das Clínicas, Faculdade de Medicina
6 resultados
Resultados de Busca
Agora exibindo 1 - 6 de 6
- Multidisciplinary approach for patients with nephropathic cystinosis: model for care in a rare and chronic renal disease(2018) VAISBICH, Maria Helena; SATIRO, Carla Aline Fernandes; ROZ, Deborah; NUNES, Debora de Almeida Domingues; MESSA, Ana Carola H Lobo; LANETZKI, Camila; FERREIRA, Juliana Caires de Oliveira AchiliAbstract Care for patients with chronic and rare diseases is complex, especially considering the lack of knowledge about the disease, which makes early and precise diagnosis difficult, as well as the need for specific tests, sometimes of high complexity and cost. Added to these factors are difficulties in obtaining adequate treatment when available, in raising patient and family awareness about the disease and treatment compliance. Nephropathic cystinosis is among these diseases. After more than 20 years as a care center for these patients, the authors propose a follow-up protocol, which has been used with improvement in the quality of care and consists of a multidisciplinary approach, including care provided by a physician, nurse, psychologist, nutritionist and social worker. In this paper, each field objectively exposes how to address points that involve the stages of diagnosis and its communication with the patient and their relatives or guardians, covering the particularities of the disease and the treatment, the impact on the lives of patients and families, the approach to psychological and social issues and guidelines on medications and diets. This protocol could be adapted to the follow-up of patients with other rare diseases, including those with renal involvement. This proposal is expected to reach the largest number of professionals involved in the follow-up of these patients, strengthening the bases for the creation of a national protocol, observing the particularities of each case.
- Epidemiology and management practices for childhood-onset systemic lupus erythematosus patients: a survey in Latin America(2018) FERREIRA, Juliana C. O. A.; TRINDADE, Vitor C.; ESPADA, Graciela; MOREL, Zoilo; BONFA, Eloisa; MAGALHAES, Claudia S.; SILVA, Clovis ArturTo assess epidemiology and management practices of Latin America Pediatric Rheumatologists (LAPR) about childhood-onset systemic lupus erythematosus (cSLE). A cross-sectional study was performed in 288 LAPR PANLAR members based on online survey about cSLE practices. The response rate of web-based survey by LAPR was 170/288(59%) and the majority worked in university hospitals (63%). The ACR and/or SLICC classification criteria (99%) and disease activity tools (97%) were almost universally used by LAPR, whereas damage index (70%) and CHAQ (58%) instruments were less frequently used. Laboratory exams, diagnostic imaging, and biopsies were generally available (>75%), however low availability for densitometry (66%). Drug access was excellent for the most common prescribed medications (>75%), except for belimumab (11%). Emerging mosquito-borne diseases were also reported: dengue (20%), chikungunya (11%), and Zika (8%). Groups were further divided in two, according to the median number of cSLE patients followed by LAPR in the last year: groups A and B (25 and <25, respectively). Frequencies of condom in combination with other contraceptive methods were significantly higher in group A than B (p=0.01). The frequencies of reported pregnancy (p<0.001) and non-adherence to therapy were significantly higher in group A (p=0.023). Alcohol intake (p=0.004) and illicit drug use (p=0.007) were also reported more frequently by LAPR of group A in at least one cSLE patient. This first large web-based survey demonstrated an overall excellent access for diagnosis and therapy by LAPR, probably related to their high rate of practices in tertiary care of university hospitals. Adherence to therapy, pregnancy, and substance abuse was identified as major challenges in this population, particularly in larger centers.
- Adolescent nursing consultation: an important excerpt from care provided by nurses in a Brazilian state(2022) ROBBA, Hingrid Cristiane Silva; COSTA, Andrea Aoki; MONTEIRO, Ana Cristina dos Santos; CARNEVAL, Debora Renata; ROSSATO, Lisabelle Mariano; FERREIRA, Juliana Caires de Oliveira AchiliObjective: the care of adolescents with or without a chronic disease must complete, standardized and focused on individual demands and the transition process to adult care and adherence to treatment. This study aimed to characterize the care provided by nurses from the state of São Paulo who work with adolescents. Method: this is a cross-sectional and descriptive study on the care provided to adolescents by nurses in São Paulo, based on the answers to a self-administered questionnaire, available in the REDCap tool between August 2018 and October 2019. Results: participants answered 1632 questionnaires. Only 38% of nurses work with adolescents, 11.2% exclusively. Professionals were divided according to the median length of professional experience in groups A and B (≤5 years and >5 years). Drug addiction (p=0.01) and working with a multidisciplinary team (p=0.04) were significantly more reported in group B. Routine follow-up (p=0.02) and questioning about sexual or physical violence (p=0.03) were significantly more performed by professionals from group A. Conclusion: this study identified the need for a care protocol that can be replicated on a large scale and that includes the treatment and the particularities of adolescents to improve adherence and the transition into adult care.
- Nursing consultation with adolescents: an important part of the care provided by nurses in a Brazilian state(2022) ROBBA, Hingrid Cristiane Silva; COSTA, Andrea Aoki; MONTEIRO, Ana Cristina dos Santos; CARNEVAL, Debora Renata; ROSSATO, Lisabelle Mariano; FERREIRA, Juliana Caires de Oliveira AchiliObjective: the care of adolescents with or without a chronic disease must complete, standardized and focused on individual demands and the transition process to adult care and adherence to treatment. This study aimed to characterize the care provided by nurses from the state of Sao Paulo who work with adolescents. Method: this is a cross-sectional and descriptive study on the care provided to adolescents by nurses in Sao Paulo, based on the answers to a self-administered questionnaire, available in the REDCap tool between August 2018 and October 2019. Results: participants answered 1632 questionnaires. Only 38% of nurses work with adolescents, 11.2% exclusively. Professionals were divided according to the median length of professional experience in groups A and B (=5 years and > 5 years). Drug addiction (p=0.01) and working with a multidisciplinary team (p=0.04) were significantly more reported in group B. Routine follow-up (p=0.02) and questioning about sexual or physical violence (p=0.03) were significantly more performed by professionals from group A. Conclusion: this study identified the need for a care protocol that can be replicated on a large scale and that includes the treatment and the particularities of adolescents to improve adherence and the transition into adult care.
- Emotional, hyperactivity and inattention problems in adolescents with immunocompromising chronic diseases during the COVID-19 pandemic(2023) CAMPOS, Reinan T.; LINDOSO, Livia; SOUSA, Renan A. de; HELITO, Alberto C.; IHARA, Bianca P.; STRABELLI, Claudia A. A.; PARADELAS, Levi M. V.; CARNEIRO, Beatriz O. L.; CARDOSO, Maria Paula R.; SOUZA, Jean Paulo V. de; FREIRE, Marianna R. de M.; ASTLEY, Camilla; LAURENTINO, Moises F.; BUSCATTI, Izabel M.; KOZU, Katia; AIKAWA, Nadia E.; SALLUM, Adriana M. E.; FERREIRA, Juliana C. O.; SIMON, Juliana R.; VIANA, Vivianne S. L.; QUEIROZ, Ligia B.; GUALANO, Bruno; ROSCHEL, Hamilton; PEREIRA, Rosa Maria R.; TOMA, Ricardo K.; WATANABE, Andreia; GRANGEIRO, Patricia M.; CASELLA, Caio B.; FARHAT, Sylvia C.; V, Guilherme Polanczyk; CAMPOS, Lucia Maria A.; SILVA, Clovis A.Objective: To assess factors associated with emotional changes and Hyperactivity/Inattention (HI) motivated by COVID-19 quarantine in adolescents with immunocompromising diseases.Methods: A cross-sectional study included 343 adolescents with immunocompromising diseases and 108 healthy adolescents. Online questionnaires were answered including socio-demographic data and self-rated healthcare routine during COVID-19 quarantine and validated surveys: Strengths and Difficulties Questionnaire (SDQ), Pitts-burgh Sleep Quality Index (PSQI), Pediatric Quality of Life Inventory 4.0 (PedsQL4.0).Results: The frequencies of abnormal emotional SDQ scores from adolescents with chronic diseases were similar to those of healthy subjects (110/343 [32%] vs. 38/108 [35%], p = 0.548), as well as abnormal hyperactivity/inat-tention SDQ scores (79/343 [23%] vs. 29/108 [27%], p = 0.417). Logistic regression analysis of independent var-iables associated with abnormal emotional scores from adolescents with chronic diseases showed: female sex (Odds Ratio [OR = 3.76]; 95% Confidence Interval (95% CI) 2.00-7.05; p < 0.001), poor sleep quality (OR = 2.05; 95% CI 1.08-3.88; p = 0.028) and intrafamilial violence during pandemic (OR = 2.17; 95% CI 1.12-4.19; p = 0.021) as independently associated with abnormal emotional scores, whereas total PedsQL score was inversely associated with abnormal emotional scores (OR = 0.95; 95% CI 0.93-0.96; p < 0.0001). Logistic regression analysis associated with abnormal HI scores from patients evidenced that total PedsQL score (OR = 0.97; 95% CI 0.95-0.99; p = 0.010], changes in medical appointments during the pandemic (OR = 0.39; 95% CI 0.19-0.79; p = 0.021), and reliable COVID-19 information (OR = 0.35; 95% CI 0.16-0.77; p = 0.026) remained inversely associated with abnormal HI scores.Conclusion: The present study showed emotional and HI disturbances in adolescents with chronic immunosuppres-sive diseases during the COVID-19 pandemic. It reinforces the need to promptly implement a longitudinal pro-gram to protect the mental health of adolescents with and without chronic illnesses during future pandemics.
- Adolescent nursing consultation: an important excerpt from care provided by nurses in a Brazilian state(2022) ROBBA, Hingrid Cristiane Silva; COSTA, Andrea Aoki; MONTEIRO, Ana Cristina dos Santos; CARNEVAL, Debora Renata; ROSSATO, Lisabelle Mariano; FERREIRA, Juliana Caires de Oliveira AchiliObjective: the care of adolescents with or without a chronic disease must complete, standardized and focused on individual demands and the transition process to adult care and adherence to treatment. This study aimed to characterize the care provided by nurses from the state of S??o Paulo who work with adolescents. Method: this is a cross-sectional and descriptive study on the care provided to adolescents by nurses in S??o Paulo, based on the answers to a self-administered questionnaire, available in the REDCap tool between August 2018 and October 2019. Results: participants answered 1632 questionnaires. Only 38% of nurses work with adolescents, 11.2% exclusively. Professionals were divided according to the median length of professional experience in groups A and B (???5 years and >5 years). Drug addiction (p=0.01) and working with a multidisciplinary team (p=0.04) were significantly more reported in group B. Routine follow-up (p=0.02) and questioning about sexual or physical violence (p=0.03) were significantly more performed by professionals from group A. Conclusion: this study identified the need for a care protocol that can be replicated on a large scale and that includes the treatment and the particularities of adolescents to improve adherence and the transition into adult care.