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Self-Management and Health Care Transition Among Adolescents and Young Adults With Chronic Kidney Disease: Medical and Psychosocial Considerations

2017 , Díaz-González de Ferris, Maria E. , Villar-Vilchis, Marta Del , Guerrero, Ricardo , Barajas-Valencia, Victor M. , Vander-Schaaf, Emily B. , Alexandre de Pomposo , Medeiros, Mara , Rak, Eniko , Cantú Quintanilla, Guillermo Rafael , Raina, Rupesh , Alvarez-Elias, Ana C. , Ferris, María

Health care transition (HCT) is a process that requires preparation as a continuum from pediatric- to adult-focused services. For adolescents and young adults with chronic or ESRD, this process can be prolonged due to their physical, psychological, family, or ecological factors. HCT preparation is a matter of patient safety and patient rights as the consequences of poor preparation at the time of transfer to adult-focused services are great, including rejection of organs, disease relapse, or even death. We present a case to illustrate important points of HCT preparation, with suggestions for intervention by the interdisciplinary team members who serve (and will serve) these survivors of pediatric-onset health conditions. To monitor the HCT process, yearly measurements of skill mastery need to take place guide interventions.

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Self-Management and Transition Readiness Assessment: Development, Reliability, and Factor Structure of the STARx Questionnaire

2015 , Ferris, María E. , Cohen, Sarah E. , Haberman, Cara , Javalkar, Karina , Massengill, Susan F. , Mahan, John D. , Kim, Sandra C. , Bickford, Kristi , Cantú Quintanilla, Guillermo Rafael , Medeiros, Mara , Phillips, Alexandra , Ferris, Michael Ted , Hooper, Stephen R.

Introduction The Self-Management and Transition to Adulthood with Rx = Treatment (STARx) Questionnaire was developed to collect information on self-management and health care transition (HCT) skills, via self-report, in a broad population of adolescents and young adults (AYAs) with chronic conditions.

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Validation of the UNC TRxANSITION Scale™Version 3 Among Mexican Adolescents With Chronic Kidney Disease

2015 , Cantú Quintanilla, Guillermo Rafael , Ferris, María , Otero, Araceli , Gutiérrez-Almaraz, Anabel , Valverde-Rosas, Saúl , Velázquez-Jones, Luis , Luque Coqui, Mercedes , Cohen, Sarah , Medeiros, Mara

Background: There is a lack of valid health care transition readiness (HCT) scales in Spanish. Objective: To provide initial validation of the UNC TRxANSITION Scale™ among Mexican adolescents and young adults (youth) with chronic kidney disease (CKD). Methods: We used the professionally translated/back translated, provider-administered UNC TRxANSITION Scale™ (Ferris et al., 2012). This 33-question scale measures HCT in ten sub-scales including knowledge about diagnosis or treatment, diet, reproductive health, school/work, insurance, ability to self-manage and looking for new health providers. Its maximum score is 10. We enrolled 163 Mexican adolescents (48.5% females) with CKD stage≥3, mean age of 15.1years (±2.1) and whose primary language is Spanish. There were 15 patients on hemodialysis (9.2%) and 30 transplant recipients (18.4%). Results were compared to those reported in adolescents with chronic conditions from the USA.

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Effect of Intradialytic Oral Nutritional Supplementation with or without Exercise Improves Muscle Mass Quality and Physical Function in Hemodialysis Patients: A Pilot Study

2022 , Martin-Alemañy, Geovana , Pérez-Navarro, Monserrat , Wilund, Kenneth R. , García-Villalobos, Gloria , Gómez-Guerrero, Irma , Cantú Quintanilla, Guillermo Rafael , Reyes-Caldelas, Miguel Angel , Espinosa-Cuevas, Angeles , Escobedo, Galileo , Medeiros, Mara , Bennett, Paul N. , Valdez-Ortiz, Rafael

Background: Oral nutritional supplementation (ONS) with or without exercise (EX) could improve muscle mass (MM) in chronic kidney disease. Methods: Patients were randomized into two groups: (1) ONS and (2) ONS + EX. Thigh muscle area (cm2) and intramuscular lipid content via attenuation were evaluated at baseline and 6 months with computed tomography (CT) to measure MM quantity and quality. Physical function was measured by six-minute walk test (6 MWT), gait speed, handgrip strength (HGS), and Time Up and Go test (TUG) at baseline and 3 and 6 months.

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Self-Management and Transition Readiness Assessment: Concurrent, Predictive and Discriminant Validation of the STARx Questionnaire

2015 , Cohen, Sarah E. , Hooper, Stephen R. , Javalkar, Karina , Haberman, Cara , Fenton, Nicole , Lai, Hsiao , Mahan, John D. , Massengill, Susan , Kelly, Maureen , Cantú Quintanilla, Guillermo Rafael , Medeiros, Mara , Phillips, Alexandra , Sawicki, Gregory , Wood, David , Johnson, Meredith , Benton, Mary H. , Ferris, Maria

Introduction: The STARx Questionnaire was designed with patient and provider input, to measure self-management and transition skills in adolescents and young adults (AYA) with chronic health conditions. With proven reliability and an empirically-based factor structure, the self-report STARx Questionnaire requires further validation to demonstrate its clinical and research utility. In this study we examine the concurrent, predictive, and discriminant validity of the STARx Questionnaire.

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A Comparative Study of the Traditional Method, and a Point-Score System for Allocation of Deceased-Donor Kidneys: A National Multicenter Study in Mexico

2011 , Cantú Quintanilla, Guillermo Rafael , Alberú-Gomez, Josefina , Reyes-Acevedo, Rafael , Medeiros, Mara , Villa, María De La Salud , Marroquín Arreola, Juan , Gracida, Carmen J. , Reyes-López, Alfonso

Background: The National Transplant Center in Mexico has ruled that deceased-donor kidney allocation is a function of each hospital's Internal Transplant Committee. The aim of this study was to compare and analyze results for of the traditional method and a point-score system in the allocation of deceased patient's kidneys. Methods: The 12 major kidney transplant centers in the country having a deceased-donor program were invited to participate. Only 3 of them replied to the invitation during 2010. A point-score system was proposed to them, comprising blood group, waiting list time, HLA type, and donor and recipient ages. Once the final recipient was chosen, an explanation of reasons for the choice was requested. Thirty-eight transplants were presented. Kappa coefficient was used to measure degree of agreement in both allocation systems. Organs donated for transplantation came from patients between 4 and 54 years old, including 52% female, 52% O+ blood type, 31% A+, and 11% B+, 44% cranial-encephalic trauma, and 44% brain hemorrhage.

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Análisis de las características sociodemográficas de los pacientes con enfermedad renal crónica terminal: Diferencias en un periodo de seis años

2012-07 , Cantú Quintanilla, Guillermo Rafael , Rodríguez, Graciela , Luque Coqui, Mercedes , Romero, Benjamín , Valverde, Saúl , Vargas, Silvia , Reyes-López, Alfonso , Medeiros, Mara

Introducción. Actualmente, la enfermedad renal crónica es un padecimiento con un gran impacto en la población infantil mexicana, con consecuencias limitantes y graves a corto plazo. La pobreza y la falta de justicia social del entorno influyen en la atención oportuna y rehabilitación a largo plazo. El objetivo de este estudio fue documentar las diferencias relacionadas con las características sociodemográficas de los pacientes que recibieron tratamiento en el Hospital Infantil de México Federico Gómez en un periodo de seis años. Métodos. Se realizó un estudio comparativo retrospectivo de los pacientes con enfermedad renal crónica terminal que fueron diagnosticados en 2003 y en 2009. La información fue proporcionada por el Departamento de Archivo Clínico y Bioestadística. Se registraron los datos de edad, sexo, etiología de la enfermedad renal, nivel socioeconómico, tipo de financiamiento, lugar de origen e ingreso a un programa de rehabilitación (diálisis o trasplante).

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A.L.L. Y.O.U. N.E.E.D. I.S. L.O.V.E. Manual on health self-management and patient-reported outcomes among low-income young adult Mexicans on chronic dialysis: Feasibility study

2022 , Brito-Suárez, Juliette Marie , Medina-Hernández, Elba , Medeiros, Mara , Cantú Quintanilla, Guillermo Rafael , Morales-Buenrostro, Luis Eduardo , Diaz-González de Ferris, María E. , Valdez-Ortiz, Rafael

We evaluated disease knowledge/self-management skills among low-income Mexican young adults maintained on dialysis and to test the effectiveness of the A.L.L. Y.O.U. N.E.E.D. I.S. L.O.V.E (AYNIL) Manual – Spanish Version on patient-reported outcomes. This is a low literacy teaching tool designed with patients and educators' input.

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National Survey Carried Out by the Mexican Society of Transplantation in 2009 Regarding Deceased-Donor Kidney Allocation

2010 , Cantú Quintanilla, Guillermo Rafael , Alberú, Josefina , Reyes-Acevedo, Rafael , Romero-Navarro, Benjamín , Noyola-Villalobos, Héctor Faustino , Medeiros, Mara

Background: The Mexican Health Law stipulated that the criteria to be taken into account for deceased donor kidney allocation should include the following: "seriousness of recipient's condition, opportunity of transplant, expected benefits, compatibility with recipient, and all other accepted medical criteria." The practical application of these criteria has been perceived by several members of transplantation committees as allowing inequity in kidney allocation. The aims of this study were to learn the opinions of transplantation committees regarding current national allocation policies, and to obtain their opinions about the advantages of a point-score system.

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Utilidad del método Delphi para la construcción de acuerdos en la asignación de riñones de donante fallecido en seis hospitales de México

2010-09 , Cantú Quintanilla, Guillermo Rafael , Reyes, Alfonso , Romero Navarro, Benjamín , Luque Coqui, Mercedes , Rodríguez Ortega, Graciela , Reyes, Rafael , Sebastián, María José , Medeiros, Mara

Objetivos: Conocer los criterios médicos y su prioridad en la asignación de riñones de paciente fallecido en Pediatría, entre los integrantes de los Comités Internos de Trasplantes de seis hospitales. Valorar si con el método Delphi es posible construir consensos para mejorar la heterogeneidad de criterios en la asignación de órganos para trasplante renal entre los médicos adscritos a los servicios de Nefrología y Cirugía en seis centros hospitalarios de México. Metodología: Se realizó un estudio con el método de expertos Delphi con tres fases y dos circulaciones para identificar comportamientos y tendencias con la sinergia del debate en un grupo. Se aplicó el índice de Kappa para evaluar concordancia de los resultados. Resultados: Los resultados de la primera circulación muestran la heterogeneidad de criterios para la asignación de órganos de donador fallecido dentro de cada hospital y de los seis hospitales comparados entre si. Con los resultados de la segunda circulación en cuatro hospitales aumentó el consenso para la elección tanto del primer como del segundo receptor. El cociente de Kappa muestra la habilidad de los resultados. Conclusión: Vemos necesario desarrollar un sistema de puntaje para la asignación de órganos de donador fallecido en México, en el que será conveniente incluir el HLA. El método Delphi permite conocer la prioridad de los criterios médicos para la asignación de riñones de donador fallecido, y ayuda a construir consensos que permitan a los Comités Internos de Trasplantes de México minimizar la subjetividad del personal involucrado en la asignación de órganos.