Medications used in pediatric cystic fibrosis population.

OBJECTIVE: To describe the drug utilization profile used by pediatric cystic fibrosis patients. METHODS: A transversal study comprising the analysis of records and interviews with caregivers of pediatric patient in a reference center of Southern Brazil. We collected information about patients' clinical condition, medication used and household therapy. RESULTS: Out of 78 patients participating in the study, prevailing characteristics were: female, self-declared white color, mutation F508del and countryside resident. Forty-three patients had health monitoring exclusively in the hospital's outpatient division. We analyzed 509 prescribed medication (6.5 medication/patient). The caregiver acknowledged the correct indication in 83% of cases. Patients with pulmonary complications and diseases and/or comorbities related to the cystic fibrosis had an increased quantity of prescribed medication. Vitamins, pancreatic enzymes, hypertonic saline solution, dornase alpha, acid ursodesoxicolic and inhalation antibiotics were most commonly prescribed. Out of the sum of medication, 265 (52.1%) were registered in the Relação Nacional de Medicamentos Essenciais , 26.7% were registered in the basic component and 25.4% were registered in the specialized component of pharmaceutical assistance. Seventy-four interviewees informed difficulty in the acquisition of at least one prescribed medication. Most of the reports acknowledge the State Health Department as the place to find and receive medication for cystic fibrosis. CONCLUSION: This study allowed reaching a deeper understanding about therapy, caring needed with patients with cystic fibrosis, highlighting to implement strategies that might contribute to enhance life quality and to execute the patients' therapy plan.

Medications used in pediatric cystic fibrosis population / Medicamentos utilizados em população pediátrica com fibrose cística

ABSTRACT Objective To describe the drug utilization profile used by pediatric cystic fibrosis patients. Methods A transversal study comprising the analysis of records and interviews with caregivers of pediatric patient in a reference center of Southern Brazil. We collected information about patients' clinical condition, medication used and household therapy. Results Out of 78 patients participating in the study, prevailing characteristics were: female, self-declared white color, mutation F508del and countryside resident. Forty-three patients had health monitoring exclusively in the hospital's outpatient division. We analyzed 509 prescribed medication (6.5 medication/patient). The caregiver acknowledged the correct indication in 83% of cases. Patients with pulmonary complications and diseases and/or comorbities related to the cystic fibrosis had an increased quantity of prescribed medication. Vitamins, pancreatic enzymes, hypertonic saline solution, dornase alpha, acid ursodesoxicolic and inhalation antibiotics were most commonly prescribed. Out of the sum of medication, 265 (52.1%) were registered in the Relação Nacional de Medicamentos Essenciais , 26.7% were registered in the basic component and 25.4% were registered in the specialized component of pharmaceutical assistance. Seventy-four interviewees informed difficulty in the acquisition of at least one prescribed medication. Most of the reports acknowledge the State Health Department as the place to find and receive medication for cystic fibrosis. Conclusion This study allowed reaching a deeper understanding about therapy, caring needed with patients with cystic fibrosis, highlighting to implement strategies that might contribute to enhance life quality and to execute the patients' therapy plan.

RESUMO Objetivo Descrever o perfil de medicamentos utilizados por pacientes pediátricos com fibrose cística. Métodos Estudo transversal com análise de prontuários e entrevista com cuidadores de pacientes pediátricos com fibrose cística atendidos em ambulatório de um centro de referência na Região Sul do Brasil. Foram coletadas informações sobre os dados clínicos dos pacientes, medicamentos utilizados e tratamento domiciliar. Resultados Dentre os 78 participantes do estudo, foram predominantes pacientes do sexo feminino, cor autodeclarada branca, com mutação F508del e procedentes do interior do Estado. Possuíam acompanhamento de saúde exclusivamente no ambulatório do hospital 43 pacientes. Foram analisados 509 medicamentos prescritos (6,5 medicamentos/paciente). A indicação correta do medicamento foi reconhecida pelo cuidador em 83,3% dos relatos. Pacientes com complicação pulmonar e doenças e/ou comorbidades associadas à fibrose cística tiveram mais medicamentos prescritos. Vitaminas, enzimas pancreáticas, solução salina hipertônica, alfadornase, ácido ursodesoxicólico e antibióticos inalatórios foram os medicamentos mais prescritos. Destes medicamentos 265 (52,1%) pertenciam à Relação Nacional de Medicamentos Essenciais, sendo 26,7% do componente básico e 25,4% pertencentes ao componente especializado da assistência farmacêutica. Referiram dificuldades para adquirir pelo menos um medicamento prescrito 74 entrevistados. Os relatos, em sua maioria, reconheceram a Secretaria Estadual de Saúde como local de fornecimento dos medicamentos para fibrose cística. Conclusão O estudo permitiu maior conhecimento sobre o tratamento e o cuidado necessário em relação ao portador de fibrose cística, observando a demanda da implementação de estratégias que possam contribuir para melhoria da qualidade de vida e o cumprimento do plano terapêutico destes pacientes.

Discrepâncias entre os registros de prontuários acerca da farmacoterapia de pacientes pediátricos com fibrose cística / Pharmacotherapy discrepancies in medical records of pediatric patients with cystic fibrosis

Introdução: Discrepâncias nos registros eletrônicos de medicamentos são frequentes e podem levar a erros relacionados a medicamentos. O objetivo deste estudo foi analisar as discrepâncias entre os registros médicos e farmacêuticos da terapia medicamentosa de pacientes com fibrose cística de um ambulatório multidisciplinar de pneumologia infantil do Sul do Brasil Métodos: Estudo transversal com coleta de dados retrospectiva através de prontuário eletrônico de pacientes que foram atendidos no ambulatório de um centro de referência para Fibrose Cística entre maio e junho de 2016. Os registros médicos e farmacêuticos foram comparados e as discrepâncias quantificadas e classificadas. Resultados: Foram analisados 81 registros de consultas ambulatoriais de 76 pacientes. Oitenta medicamentos constavam nos registros, sendo os mais frequentes polivitamínicos, enzimas pancreáticas, dornase alfa, ácido ursodesoxicólico e solução salina hipertônica. Foram identificadas discrepâncias em 96% dos registros, totalizando 245 discrepâncias, entre elas omissões de medicamentos no registro farmacêutico (102) e no médico (80), além de doses (41) e regimes terapêuticos (23) diferentes. Foram observadas omissões de dose no registro farmacêutico (63) e no médico (52) e omissões de regime (11) em ambos. Conclusão: A elevada taxa de discrepâncias corrobora com os resultados de diversos estudos. A conciliação tem o objetivo de promover o uso racional e diminuir os erros relacionados a medicamentos, podendo ser realizada de maneira sistematizada. A avaliação da qualidade do uso de medicamentos pode ser feita através da utilização de indicadores, sendo as discrepâncias um indicador sensível para este objetivo (AU)

Introduction: Discrepancies in electronic records of medication are frequent and may lead to drug-related errors. This study aims to analyze discrepancies between medical and pharmaceutical records of pharmacotherapy in patients with cystic fibrosis in a multidisciplinary pediatric pulmonology outpatient hospital in southern Brazil. Methods: Transversal study with retrospective data collection through electronic medical records of patients assisted in the outpatient room of a reference center for cystic fibrosis within May and June 2016. Both records, medical and pharmaceutical, were compared and unconformities were quantified and classified. Results: An amount of 81 records of 76 patients were analyzed. A total of 80 medications were observed in the records, most frequently multivitamins, pancreatic enzymes, dornase alpha, ursodesoxycholic acid and hypertonic saline solution. The discrepancies were present in 96% of records, totaling 245 discrepancies, among them omissions of medication in the pharmaceutical records (102) and in the medical records (80), doses (41) and different therapy regimes (23). We observed omissions in pharmaceutical records (63), in medical records (52) and in both (11). Conclusion: The high level of discrepancies endorses results of a variety of studies. Reconciliation has the objective of promoting rational use and diminishing errors related to medication, when performed systematically. The evaluation of quality use of medication might be performed through the use of indicators, considering the discrepancy a sensible indicator for this goal (AU)

Evaluation of an online education and support intervention for adolescents with diabetes.

The current study evaluated an online education and support website intervention for adolescents with Type 1 diabetes. Participants were enrolled in an 8-week, online program addressing diabetes-related issues for adolescents. The evaluation comprised an intervention trial in which participants were assigned to an intervention or control group, and pre- and post-intervention measures of social support were administered. Outcomes indicated interventional gains approaching significance in participants' quality of relationships with others external to their family. Post-intervention qualitative interviews with intervention group participants identified beneficial impacts of decreased isolation, knowledge gain, and normalization of experience. Findings suggest that online information and support is an important resource in augmenting clinical care. Implications and recommendations for clinical practice are discussed.

Transition from pediatric to adult diabetes care: smooth or slippery?

OBJECTIVES: The purpose of this study is to evaluate the practices of diabetes health care providers concerning the transition from pediatric to adult diabetes care. The information presented here may help increase awareness of the organization of transitional care for young people with diabetes and prevent the loss of follow-up during this vulnerable period in their lives. METHODS: A questionnaire with an explanatory letter was sent to all members (n = 578) of the International Society for Pediatric and Adolescent Diabetes (ISPAD). A follow-up mailing was sent 4 months later. RESULTS: In total, 92 questionnaires (16%) from members representing 36 countries were included in the analysis. In 76% of the centers, youth are seen until the age of 18 yr; 36% of the pediatric centers see adults > 25 yr; 30% report children under the age of 16 receive follow up from adult diabetologists or internists. About half of the programs already have a structured transition process usually targeting youth 16-25 yr of age. The majority of responders propose that preparation for transition starts at least 1 yr prior to leaving the pediatric center. CONCLUSION: Youth with type 1 diabetes often struggle to keep diabetes management a priority and find it challenging to maintain optimal metabolic control. When they graduate from pediatric care, some of these young people opt out of care altogether, only to resurface in the medical system when they develop complications which may have been prevented. Our survey of diabetes health care professionals in 36 countries worldwide shows that the actual transition practices in many places are far from optimal and require improvement. Transitional care should start early and strategies should promote uninterrupted, comprehensive, and accessible adult care.

Translating transition: a critical review of the diabetes literature.

Effective transition to an adult diabetes care provider is a significant component of care in adolescents with diabetes mellitus. During this period adolescents are at risk of dropping out of medical follow-up, an action which may interfere with their future physical and psychological well-being. The purpose of this paper is to review the diabetes literature as it pertains to transition including the outcomes, methods and patients' perceptions of the transition period. The results of the studies examined demonstrate a decrease in diabetes care visits following transition and that improvement in clinic attendance may be achieved through: (1) implementing an educational transition program; (2) having a transition care coordinator; and (3) having a young adult transition clinic attended by both adult and pediatric physicians. Despite the recognized importance of successful transition for adolescents with diabetes, studies on the subject remain sparse, highlighting the need for further research to determine both the magnitude of the problem as well as the impact of interventions to improve the processes of transition.

Psychological issues in the care of children and adolescents with type 1 diabetes.

The present article highlights some of the psychological issues in children and adolescents with type 1 diabetes and provides health professionals with some strategies for addressing them.