Factors related to the readiness of Brazilian chronic pediatric patients to transition to care in adult clinics

Abstract Objective Advances in medicine have increased the life expectancy of pediatric patients with chronic illnesses, and challenges with the guided transition of adolescents and young adults from pediatric clinics to adult clinics have grown. The aim of this study was to better understand readiness and factors related to this transition process in Brazil. Method In this cross-sectional study of 308 patients aged from 16 to 21 years under follow-up in pediatric specialties, the degree of readiness for transition was assessed using the Transition Readiness Assessment Questionnaire (TRAQ) and its domains. Associations with demographic data, clinical data, socio-economic level, medication adherence, family functionality, and parental satisfaction with health care were evaluated. Results The median TRAQ score was 3.7 (3.2 - 4.2). Better readiness was associated with female patients, socio-economic class A-B, current active employment, higher level of education, not failing any school year, attending medical appointments alone, functional family, and a good knowledge of disease and medications. A low correlation was observed between TRAQ and age. TRAQ presented good internal consistency (alpha-Cronbach 0.86). In the multiple linear regression, TRAQ score showed a significant association with female gender, advanced age, socio-economic class A-B, better knowledge of disease and medications, and independence to attend appointments alone. Conclusion TRAQ instrument can guide healthcare professionals to identify specific areas of approach, in order to support adolescents with chronic disease to set goals for their own personal development and improve their readiness to enter into the adult healthcare system. In this study, some factors were related to better TRAQ scores.

O trabalho interdisciplinar no hospital: acompanhamento de uma criança com condições crônicas complexas / Hospital interdisciplinary work: monitoring a child with complex chronic conditions / Travail interdisciplinaire à l'hôpital: suivi d'un enfant atteint de maladies chroniques complexes / El trabajo interdisciplinar en el hospital: monitoreo de una niña con enfermedades complejas crónicas

Resumo Este estudo narra a experiência de uma psicóloga em intervenção interdisciplinar realizada com uma criança hospitalizada com condições crônicas complexas de saúde, diagnosticada com amiotrofia muscular espinhal tipo I. A experiência foi vivenciada em conjunto com a terapia ocupacional e o relato foi estruturado a partir do material clínico registrado em diário de campo pela psicóloga da dupla, durante as sessões semanais ao longo de dois anos de acompanhamento. A experiência trouxe desafios e crescimento pessoal à psicóloga, autora deste estudo, bem como à paciente, por meio de atividades lúdicas adaptadas às suas necessidades, ampliando o cuidado para além da dimensão técnica e tecnológica, que são importantes para a garantia do funcionamento orgânico, embora não suficientes para uma qualidade de vida minimamente satisfatória.

Abstract This study narrates the experience of a psychologist in an interdisciplinary intervention carried out with a hospitalized child with Complex Chronic Conditions, diagnosed with Spinal Muscular Amyotrophy Type I. The intervention took place in conjunction with occupational therapy and the report was structured based on clinical material recorded on the psychologist's fieldnotes, during weekly sessions over two years of monitoring. The experience brought challenges and personal growth to the psychologist, author of this study, as well as to the patient, by means of playful activities adapted to her needs, expanding care beyond the technical and technological dimension-which are important to guarantee organic functioning, although insufficient for a minimally satisfactory quality of life.

Résumé Cette étude raconte l'expérience d'une psychologue dans une intervention interdisciplinaire menée auprès d'un enfant hospitalisé atteint de maladies chroniques complexes, diagnostiqué avec une amyotrophie musculaire spinale de type I. L'intervention a eu lieu en conjonction avec l'ergothérapie et le rapport a été structuré à partir du matériel clinique enregistré par le psychologue dans un journal de terrain, au cours de séances hebdomadaires pendant deux ans de suivi. L'expérience a apporté des défis et une croissance personnelle au psychologue, auteur de cette étude, ainsi qu'à la patiente, par le biais d'activités ludiques adaptées à ses besoins, élargissant les soins au-delà de la dimension technique et technologique-qui sont importantes pour assurer le fonctionnement organique, bien qu'insuffisantes pour une qualité de vie minimalement satisfaisante.

Resumen Este estudio presenta la experiencia de una psicóloga en una intervención interdisciplinaria, realizada con una niña hospitalizada con enfermedades complejas crónicas, específicamente con amiotrofia muscular espinal tipo I. La experiencia se dio junto con la terapia ocupacional, y el relato fue estructurado a partir de material clínico registrado por la psicóloga del dúo en un diario de campo, durante sesiones semanales por dos años de monitoreo. La experiencia trajo desafíos y crecimiento personal a la psicóloga, autora de este estudio, así como a la paciente por medio de actividades lúdicas adaptadas a sus necesidades, lo que amplió la atención más allá de la dimensión técnica y tecnológica, elementos importantes para garantizar el funcionamiento orgánico, pero no suficiente para brindarle una calidad de vida mínimamente satisfactoria.

Pharmaceutical clinical services in basic care in a region of the municipality of São Paulo

Pharmaceutical care has undergone several transformations in the health context over the years. Thus, the pharmacist has suffered a reconfiguration of his performance, mainly with the incorporation of clinical services and patient approach. The study analyzed the results of the implementation of pharmaceutical clinical services in Primary Health Care, through the use of indicators of supply, demand and productivity, clinical and process quality related to pharmaceutical care. We included all the clinical visits (n=1,833) performed to 1,080 users in 12 Basic Health Unit facilities from May to November 2016, of which 40.8% (n=748) were consultations in the establishments and 50.2% (n=1,085) home visits. Most patients (73.5%) were referred by team and 17.5% were captured through active search. Of the total workload, 12.5% ​​were dedicated to pharmaceutical consultations and 20.0% to home visits. In total, we identified 3,078 pharmacotherapy-related issues, an average of 2.8 per patient, and 6,882 pharmaceutical interventions were performed, equivalent to 6.3 interventions per patient. The problem with adherence to pharmacotherapy and the intervention of medication counseling were the most found. Results reinforce the importance of pharmaceutical clinical services in identifying the control of the most prevalent health conditions and monitoring the therapeutic results associated with drug use

Clinical outcomes of medication therapy management services in primary health care

ABSTRACT This study evaluates whether the integration of pharmacists into health-care teams through the delivery of pharmaceutical care-based medication therapy management (MTM) services can improve the clinical outcomes of patients with chronic health conditions in the primary health-care setting. A retrospective descriptive study of 92 outpatients assisted by MTM pharmacists in primary health-care units was carried out over 28 months (median follow-up: 05 months). Patients were followed up by MTM pharmacists, with a total of 359 encounters and a ratio of 3.9 encounters per patient. The prevalence of hypertension, diabetes mellitus and dyslipidaemia was 29.5%, 22.0% and 19.4%, respectively. There was a high prevalence of drug-related problems with a ratio of 3.4 per patient. Pharmacists performed a total of 307 interventions to prevent or resolve drug-related problems. With regard to control of the most prevalent chronic medical conditions, a high percentage of patients reached their therapy goals by the last encounter with the pharmacist: 90.0% for hypertension, 72.3% for diabetes mellitus and 90.3% for dyslipidaemia. MTM services provided by pharmacists resolved drug therapy problems and improved patients' clinical outcomes. This study provides evidence for health-care managers of the need to expand the clinical role of pharmacists within the Brazilian public health-care system.

Doenças crônicas em crianças e adolescentes: uma revisão bibliográfica / Chronic diseases in children and adolescents: a review of the literature

O artigo analisa artigos publicados entre 2003 e 2011 enfocando discussões sobre condições crônicas ou doenças crônicas de crianças e adolescentes. Metodologicamente conjuga a revisão de literatura a uma análise de conteúdo temática com vistas a identificar quais os elementos que caracterizam doenças crônicas em crianças e adolescentes e as especificidades geradas por essas condições. A revisão resultou na descrição do conjunto dos artigos, caracterizando-os quanto ano de publicação, país, tipo de estudo, população e condição de cronicidade abordada. A análise de conteúdo temática gerou dois temas: Definição de Doença Crônica e Formas de se lidar com as doenças crônicas em crianças e adolescentes. Destaca-se como conclusão que as transições etárias quando uma doença é diagnosticada e tratada desde a infância, vai passar por transformações que incluem a maneira como se dá o seu fluxo entre os serviços e as mudanças que envolvem processos de alta, de tomada de decisão e de construção de rede que inclua família, hospital, escola e sistema de garantia de direitos.

The scope of this article is to analyze papers published between 2003 and 2011 that focus on discussions regarding chronic conditions or chronic diseases in children and adolescents. It combines a methodological review of the literature and thematic analysis of content in order to identify the elements that characterize chronic diseases in children and adolescents and the specificities generated by these chronic conditions. The review of the literature resulted in a description of the series of articles identified by year of publication, country of origin, type of study, population and the chronic condition addressed. Thematic content analysis generated two core themes: Definition of chronic disease and Ways of handling chronic disease in children and teenagers. The main conclusion reached is that the age transitions when a disease is diagnosed and treated since childhood involve transformations that include changes in health facilities, discharge processes, decision making and networking that include family, hospital, school and institutions that guarantee the child's rights.

Avaliação de qualidade de vida e importância dada a espiritualidade/religiosidade/ crenças pessoais (SRPB) em adultos com e sem problemas crônicos de saúde / Evaluation of quality of life and importance given to spirituality/religiousness/personal beliefs (SRPB) in adults with and without chronic health conditions

CONTEXTO: Não existem estudos avaliando a associação entre religiosidade e qualidade de vida, comparando pessoas doentes e saudáveis, independentemente do tipo de doença e da idade. OBJETIVO: Verificar a associação entre: (1) presença de uma doença crônica e a importância dada à espiritualidade/religiosidade/ crenças pessoais (SRPB); (2) presença de um problema crônico de saúde e qualidade de vida (QV), ajustada para fatores como idade, nível socioeconômico (NSE) e sintomas depressivos; (3) QV e a importância dada à SRPB, também ajustada para os mesmos fatores. DELINEAMENTO: estudo transversal. Sujeitos: n = 241, sendo 122 pacientes internados e ambulatoriais com alguma doença crônica, provenientes de um hospital universitário, e 119 indivíduos saudáveis membros ativos de comunidades religiosas. Instrumentos: a) WHOQOL-100 (QV); b) BDI (sintomas depressivos); c) WHOQOL-SRPBi - escala de importância dada às facetas do módulo de SRPB do WHOQOL-100 (importância dada à SRPB). RESULTADOS: Pacientes mostraram piores escores que os saudáveis na maioria dos domínios do WHOQOL-100, com exceção do domínio do SRPB. Os pacientes (média = 97,2 ± 13,0) tiveram escores mais altos que os saudáveis (média = 92,9 ± 16,4) na avaliação de importância dada à SRPB (P = 0,03). Usando um modelo de regressão múltipla, a importância dada à SRPB aparece positivamente associada com os domínios geral, psicológico, relacionamento social, ambiente e SRPB do WHOQOL-100 (beta = 0,10; beta = 0,17; beta = 0,12; beta = 0,11; beta = 0,72, respectivamente; P < 0,05), quando ajustado para idade, NSE, sintomas depressivos e a presença de um problema crônico de saúde. CONCLUSÃO: A importância da SRPB aparece positivamente associada com a QV na maioria de seus domínios, independentemente de outros fatores envolvidos. Esse achado pode ser considerado ao se planejarem intervenções para a melhoria da QV de pacientes acometidos por problemas crônicos de saúde.

BACKGROUND: There is a lack of studies seeking to elucidate the association of religiousness with quality of life, comparing sick and healthy people, regardless the type of disease and age group. OBJECTIVE: To examine the association between: (1) presence of a chronic health condition and the importance given to spirituality/ religiousness/personal beliefs (SRPB); (2) presence of a chronic health condition and quality of life (QOL) adjusted for age, socioeconomic level and depressive symptoms; (3) QOL and importance given to SRPB, also adjusted for the same factors. DESIGN: cross-sectional study. Participants: n = 241 consisted of 122 inand outpatients from a university hospital and 119 religious healthy subjects from community. Measurements: a) WHOQOL-100 (QOL); b) BDI (depressive symptoms); c) WHOQOL-SRPBi - scale of importance assigned to the facets of the Spirituality/Religiousness/Personal Beliefs Module of WHOQOL-100 to measure importance given to religiousness. RESULTS: Patients in comparison to healthy subjects showed worse scores in most WHOQOL-100 domains. The patients' mean score of the WHOQOL-SRPBi was 97.2 compared to the healthy subjects' mean score = 92.9 (P = 0.03). After using a multiple regression model, the WHOQOL-SRPBi appears positively associated with the psychological, the social relationships, the environment, the SRPB domains and general QOL (beta = 0.17; beta = 0.12; beta = 0.11; beta = 0.72; beta = 0.10, respectively), when adjusted for age, SEL, BDI and the presence of a chronic health condition. DISCUSSION: The more important is the SRPB for these people, the better is their QOL in most of their domains, independently of other factors involved. This finding may be taken into account when planning interventions to improve QOL of chronic health patients.