Design of a Rheumatology Transition Clinic for a Resource-Constrained Setting.

OBJECTIVES: To describe the design process of a medical care program for adolescents with pediatric onset rheumatic diseases (PRD) during the transition from pediatric to adult care in a resource-constrained hospital. METHODS: The model of attention was developed in three steps: 1) the selection of a multidisciplinary team, 2) the evaluation of the state of readiness of patients and caregivers for the transition, and 3) the design of a strategy of attention according to local needs. The results of the first two steps were used in order to develop the strategy of attention. RESULTS: The transition process was structured in three stages: pretransition (at pediatric rheumatology clinic), Transition Clinic for Adolescents with Rheumatic Diseases (TCARD, the main intervention), and post-transition (at adult rheumatology clinic). Each stage was divided, in turn, into a variable number of phases (8 in total), which included activities and goals that patients and caregivers were to accomplish during the process. A multidisciplinary approach was planned by pediatric and adult rheumatologists, nutritionists, physiatrists, psychiatrist, psychologist, nurse, and social worker. During TCARD, counseling, education, nutritional, physical, and mental health interventions were considered. CONCLUSIONS: The proposed transition model for patients with rheumatic diseases can be a useful tool in developing countries.

Psychosocial and economic impact of rheumatic diseases on caregivers of Mexican children.

BACKGROUND: Pediatric rheumatic disease (PRD) patients and their caregivers face a number of challenges, including the consequences of the PRD in patients and the impact on multiple dimensions of the caregivers' daily lives. The objective of this study is to measure the economic, psychological and social impact that PRD has on the caregivers of Mexican children. METHODS: This is a multicenter, cross-sectional study including primary caregivers of children and adolescents with PRD (JIA, JDM and JSLE) during April and November, 2019. A trained interviewer conducted the CAREGIVERS questionnaire, a specific, 28-item multidimensional tool validated to measure the impact on different dimensions of the lives of caregivers. Sociodemographic, clinical, and healthcare system data were collected for further analysis. RESULTS: Two hundred participants were recruited (women 169, 84.5%, aged 38 [IQR 33-44] years); 109 (54.5%) cared for patients with JIA, 28 (14%) JDM and 63 (31.5%) JSLE. The healthcare system was found to be determinant on the impact of the disease. The emotional impact was higher in all the participants, regardless of the specific diagnoses. The social dimension showed significant differences regarding PRD, healthcare system, time to reach the center, presence of disability, active disease, cutaneous and systemic manifestations, treatment and partner. Financial and work impacts were more frequent in those caring for JSLE and less so in those with a partner. Family relationships changed in 81 caregivers (25 [12.5%] worsened and 56 [28%] improved). No variables affecting spirituality were found. For caregivers without a partner, the social networks impact increased. CONCLUSION: The influence of sociodemographic factors can be devastating on families with children with a PRD. These data will help physicians to identify the areas with the greatest need for intervention to achieve comprehensive care for caregivers and their patients.

Use of Adjunctive Therapy in Acute Kawasaki Disease in Latin America.

Objective: To characterize the use of adjunctive therapy in Kawasaki disease (KD) in Latin America. Methods: The study included 1,418 patients from the Latin American KD Network (REKAMLATINA) treated for KD between January 1, 2009, and May 31, 2017. Results: Of these patients, 1,152 received only a single dose of IVIG, and 266 received additional treatment. Age at onset was similar in both groups (median 2 vs. 2.2 years, respectively). The majority of patients were male (58 vs. 63.9%) and were hospitalized with the first 10 days of fever (85.1 vs. 84.2%). The most common adjunctive therapy administered was steroids for IVIG-resistance, followed by additional doses of IVIG. The use of biologics such as infliximab was limited. KD patients who received adjunctive therapy were more likely to have a lower platelet count and albumin level as well as a higher Z score of the coronary arteries. Conclusion: This is the first report of adjunctive therapies for KD across Latin America. IVIG continues to be the initial and resistance treatment, however, steroids are also used and to a lesser extent, biological therapy such as infliximab. Future studies should address the barriers to therapy in children with acute KD throughout Latin America.

Development and validation of the CAREGIVERS questionnaire: multi-assessing the impact of juvenile idiopathic arthritis on caregivers.

BACKGROUND: The primary caregiver is an important person in the life of patients with JIA. Their reactions depend on social, emotional and economic factors that affect the therapeutic alliance. Some generic instruments have been used to evaluate burden, anxiety, or quality of life of caregivers. This study aims to develop a specific instrument to measure the psychosocial and economic impacts on primary caregivers of patients with JIA. METHODOLOGY: This is a mixed methods research, that includes qualitative and quantitative data, and was carried out in two phases. First phase: a pragmatic qualitative study (questionnaire construction) was conducted in two parts, a non-systematic literature review followed by interviews with primary caregivers. Second phase: a cross-sectional study (questionnaire validation) to complete validation and estimate Cronbach's alphas based on tetrachoric correlation coefficients, correlation matrix and Cohen's kappa coefficient test. RESULTS: There were 38 articles found related to the experience of caregivers. 15 primary caregivers were interviewed (female 93%, median age 45 years). Thematic analysis identified 9 important topics from the perspective of participants (economic impact, coping, family roles, impact of diagnosis, mental health, couple/mate relationships, impact at work, religion, and knowledge of the disease). These topics were combined to create the interview questionnaire (56 items). Later, it was modified to 62 items that were divided into five dimensions: impact of the disease (psychosocial, economic, family, and relationships), knowledge of the disease, alternative medicine, future, and religion. The interview questionnaire was applied to 32 primary caregivers (female 93%, median age 37 years), results identify depression on 29 (90%), 18 (56%) feel sadness at diagnosis, 20 (63%) mentioned that JIA has influenced in their financial situation, 23 (72%) feel anxiety about the future, and 11 (37%) considered that their family relationships have changed. Statistical analysis identified inconsistencies during convergent and divergent validity of the construct. Consequently, 11 items were eliminated, 3 relocated, 6 modified, and 39 compacted obtaining the "Impact of Pediatric Rheumatic Diseases on Caregivers Multi-assessment Questionnaire" (CAREGIVERS questionnaire). This final version resulted on an eight-dimension (28 items) instrument. CONCLUSIONS: The CAREGIVERS questionnaire captures perspectives of both the participants and clinicians. It will be helpful to measure the impact of the disease and thus, to improve the quality of care of children with JIA and their families.

Procalcitonina de cordón umbilical como predictor de sepsis temprana en recién nacidos prematuros "en Tamaulipas, México 2016". Resultado preliminar / Umbilical cord blood serum procalcitonin as predictor of early onset sepsis in premature infants in Tamaulipas México, 2016. Preliminary results

Resumen Introducción: La sepsis causa alta mortalidad en el prematuro, afecta hasta 19 de 1000 en los menores de 1000 g y su manifestación puede ser inespecífica. La toma de decisión del uso de antibióticos es difícil, siendo necesario un predictor rápido, barato y efectivo para sepsis temprana. Objetivo: Determinar la utilidad de la procalcitonina de cordón umbilical como predictor de sepsis temprana en el recién nacido prematuro. Materiales y métodos: Estudio descriptivo, longitudinal, de junio a noviembre del 2016. Se incluyeron 22 recién nacidos < 37 semanas de gestación, con o sin factores de riesgo para infección. Los neonatos con malformaciones o sospecha de enfermedad metabólica fueron excluidos. Procalcitonina y hemocultivo de cordón fueron tomados al nacimiento, posteriormente fueron valorados desde el nacimiento hasta las 72 horas de vida para datos de sepsis. Resultados: Doce desarrollaron sepsis temprana y diez no. La media de procalcitonina de cordón en el grupo de sepsis fue de 0,68 ng/ml versus de 0,13 ng/ml en el grupo sin sepsis, p=0.025. En el análisis bajo el área de la curva ROC para la procalcitonina fue de 0,75. El valor de corte de procalcitonina de cordón fue de 0,14 ng/ml como predictor de sepsis temprana (sensibilidad 75%, especificidad 70%, valor predictivo positivo 75%, valor predictivo negativo 70%). Conclusiones: La procalcitonina de cordón umbilical al nacimiento puede ser un parámetro útil como marcador de sepsis neonatal temprana en el prematuro, sin embargo, estos resultados deben ser validados con un tamaño de muestra más grande. MÉD.UIS. 2018;31(1):23-30.

Abstract Introduction: Sepsis is a cause of high mortality in the premature, it affects up to 19 of 1000 in children under 1000 g and its manifestation may be nonspecific. Decision-making on the use of antibiotics is not always easy, so it is worth having an fast, cheap and effective predictor of early onset sepsis. Objective: To determine the use of serum procalcitonin umbilical cord as a predictor of early onset sepsis in preterm infants. Materials and methods: Longitudinal descriptive study from june to november 2016 was made. 22 preterm infants (<37 weeks of gestation) were included, with or without risk factors for infection. Neonates with malformations or suspicion of metabolic disease were excluded. A blood sample was taken from the umbilical artery for procalcitonin and blood culture at birth, subsequently they were assessed from birth to 72 hours of life for sepsis data. Results: Twelve developed early onset sepsis and ten did not. The mean procalcitonin of umbilical cord in the sepsis group was 0.68 ng/ml versus 0.13 ng/ml in the group without sepsis, p=0.025. In the analysis under the ROC curve area for procalcitonin was 0.75. The cut value of umbilical cord procalciton was 0.14 ng/ml as a predictor of early sepsis (sensitivity 75%, specificity 70%, positive predictive value 75%, negative predictive value 70%). Conclusions: Procalcitonin of umbilical cord at birth may be a useful parameter as a marker of early onset sepsis in the premature, however these results must be validated with a larger sample size. MÉD.UIS. 2018;31(1):23-30.