Learning to cope with asthma: a behavioural self-management program for children

doi:10.1016/0738-3991(93)90094-D

Patient Education and Counseling

Volume 22, Issue 3, 31 December 1993, Pages 141-152

https://doi.org/10.1016/0738-3991(93)90094-D Get rights and content

Abstract

An educational training program for children with asthma, aged between 8 and 13 years, was evaluated in an 18-month randomized, controlled experiment, including three follow-up evaluations. The objective of the program is to improve coping with asthma in daily life. The program, ten 1-hour sessions, is a combination of self-management training and cognitive behaviour therapy in a group, using games and learning materials specifically designed for this age group. From 195 asthmatic children, 112 with inadequate self-management abilities were selected; these children were randomly divided into an experimental group and two control groups. The results indicated highly significant differences in favor of the experimental group on the psychological and medical variables. There were no drop-outs during the program. The conclusion is that this multi-faceted program is an effective method of teaching children how to cope with their asthma and helping them to achieve a less anxious and more realistic attitude towards their illness.

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Cited by (76)

GEMA 5.3. Spanish Guideline on the Management of Asthma
2023, Open Respiratory Archives
The Spanish Guideline on the Management of Asthma, better known by its acronym in Spanish GEMA, has been available for more than 20 years. Twenty-one scientific societies or related groups both from Spain and internationally have participated in the preparation and development of the updated edition of GEMA, which in fact has been currently positioned as the reference guide on asthma in the Spanish language worldwide.
Its objective is to prevent and improve the clinical situation of people with asthma by increasing the knowledge of healthcare professionals involved in their care. Its purpose is to convert scientific evidence into simple and easy-to-follow practical recommendations. Therefore, it is not a monograph that brings together all the scientific knowledge about the disease, but rather a brief document with the essentials, designed to be applied quickly in routine clinical practice. The guidelines are necessarily multidisciplinary, developed to be useful and an indispensable tool for physicians of different specialties, as well as nurses and pharmacists.
Probably the most outstanding aspects of the guide are the recommendations to: establish the diagnosis of asthma using a sequential algorithm based on objective diagnostic tests; the follow-up of patients, preferably based on the strategy of achieving and maintaining control of the disease; treatment according to the level of severity of asthma, using six steps from least to greatest need of pharmaceutical drugs, and the treatment algorithm for the indication of biologics in patients with severe uncontrolled asthma based on phenotypes. And now, in addition to that, there is a novelty for easy use and follow-up through a computer application based on the chatbot-type conversational artificial intelligence (ia-GEMA).
La Guía Española para el Manejo del Asma, mejor conocida por su acrónimo en español, GEMA, está a nuestra disposición desde hace más de veinte años. Veintiuna sociedades científicas o grupos relacionados, tanto de España como de otros países, han participado en la preparación y desarrollo de la edición actualizada de GEMA que, de hecho, se ha posicionado en la actualidad a nivel mundial como la guía de referencia sobre asma en lengua española.
Su objetivo es prevenir y mejorar la situación clínica de las personas con asma, aumentando el conocimiento de los profesionales sanitarios involucrados en su cuidado. Su propósito es convertir la evidencia científica en recomendaciones prácticas sencillas y fáciles de seguir. Por lo tanto, no se trata de una monografía que reúna todo el conocimiento científico sobre la enfermedad, sino más bien de un documento conciso con lo esencial, diseñado para ser aplicado rápidamente en la práctica clínica de rutina. Las recomendaciones son necesariamente multidisciplinares, están desarrolladas para ser útiles y una herramienta indispensable para médicos de diferentes especialidades, así como para profesionales de enfermería y farmacia.
Seguramente, los aspectos más destacados de la guía son las recomendaciones para: establecer el diagnóstico del asma utilizando un algoritmo secuencial basado en pruebas diagnósticas objetivas; el seguimiento de los pacientes, preferentemente basado en la estrategia de lograr y mantener el control de la enfermedad; el tratamiento según el nivel de gravedad del asma utilizando seis escalones, desde la menor hasta la mayor necesidad de medicamentos, y el algoritmo de tratamiento basado en fenotipos para la indicación de biológicos en pacientes con asma grave no controlada. A esto se suma ahora una novedad para su fácil uso y seguimiento a través de una aplicación informática basada en la inteligencia artificial conversacional de tipo chatbot (ia-GEMA).
Developmentally appropriate supported self-management for children and young people with chronic conditions: A consensus
2020, Patient Education and Counseling
Citation Excerpt :
A recent systematic review completed by our research group showed that developmentally appropriate self-management education interventions targeted at children and young people with asthma, cystic fibrosis and diabetes result in many positive health outcomes [12]. More specifically, developmentally appropriate chronic condition self-management education interventions lead to improvements in children and young people’s: chronic condition self-management skills, abilities, and behaviours [13–18]; chronic condition knowledge [13,19–21] cooperation/communication [14–16,22]; ability to share in decision making [15,16,22]; self-efficacy [13,15,18,23,24], and in quality of life [18,19]. Teaching developmentally appropriate self-management skills may also help to improve the young person’s transition from paediatric to adult health care settings [25].
To create a consensus list of self-management definitions, recommendations, and endpoints for children and young people (0–20 years) with chronic conditions.
This study used a Delphi technique. Based on the number of relevant peer-reviewed publications, clinical academics were invited to participate in three survey rounds. Round one contained open-ended and multiple-choice questions eliciting general opinions on self-management. For round two, results were provided to the interdisciplinary expert panel as statements for rating their agreement using a 7-point Likert scale, with consensus predefined as moderately or extremely satisfied by >70% of participants. Statements not meeting consensus were re-presented in round three, with group feedback incorporated. Finalised statements informed creation of the ‘Partners in Health: Self-Management Consensus List for Children and Young People’.
Sixteen clinical academics participated: 12 completed round one; 14 completed round two; and 12 completed round three. Of 101 statements, 90 reached consensus, with statements separated into five developmentally appropriate groups. Statements covered broad self-management and self-management support domains including knowledge, involvement, monitoring/responding to symptoms, transition, impact, lifestyle, and support. Division of responsibility and autonomy were distinct themes.
This research provides consensus-based guidance for clinicians providing paediatric self-management support.
What are the components of effective chronic condition self-management education interventions for children with asthma, cystic fibrosis, and diabetes? A systematic review
2019, Patient Education and Counseling
Citation Excerpt :
Active participation is a well-known evidence-based strategy for educating children and adolescents, and is promoted to teachers by government agencies [49,50,55]. The fourth key educational component was found to be ‘collaboration’, and is inclusive of participation (promoted in n = 21/30 studies) [18–22,1–24,26,28–35,38,39,41,46,47]. Developmental theorist Lev Vygotsky was an advocate for the use of collaborative group activities to assist learning [56].
To articulate the components of educational interventions that help children learn about managing their asthma, cystic fibrosis, or diabetes, relevant to their age/developmental status.
A systematic review of chronic condition self-management (CCSM) educational interventions that included age/developmentally appropriate components, published before 27 January 2018, including evidence level and quality assessments. Teaching approaches were extracted and translated into practical components.
Twenty education interventions were identified, published across 30 studies. Most studies (n = 20/30) were based on the theories of Piaget and Bandura. Similar teaching approaches were used across conditions, incorporating sequenced curriculum and a variety of active elements. Age/developmentally appropriate interventions resulted in improvements in the CCSM capabilities of children. Outcomes were improved when compared with usual care.
For very young children, educational interventions were directed at parents/families. As children reached school age, interventions increasingly became child-focused, promoting autonomy. Integrated play and reinforcement were common. Adolescent interventions placed greater emphasis on communication, problem-solving, and role division.
Eight key components were identified: structured and sequenced curricula; reinforcement; active participation; collaboration; autonomy; feedback; multiple exposures; and, problem-solving. Different components are relevant to specific life stages.
Clinicians require age/developmentally appropriate practical education tools to provide effective paediatric health care.
GEMA<sup>4.0.</sup> Guidelines for Asthma Management
2015, Archivos de Bronconeumologia
El principal objetivo de la presente guía es mejorar el control y calidad de vida de las personas con asma mediante el incremento de la formación técnica de los profesionales sanitarios que deben atenderles. En particular en los aspectos relacionados con la prevención y valoración diagnóstica-terapéutica de la enfermedad.
No obstante, la GEMA es una plataforma que aglutina una serie de acciones complementarias, todas diseñadas para alcanzar el objetivo antes descrito, entre las que sobresale el presente documento: una guía de práctica clínica basada en la evidencia. Posteriormente, otros documentos (GEMA de Bolsillo. GEMA de Pacientes, GEMA Educadores, Indicadores de Calidad Asistencial del Asma, etc.) irán completando la “familia” de la GEMA.
Específicamente, el presente documento (guía de práctica clínica) y toda la estrategia que conforma la plataforma GEMA^4.0, está dirigida a médicos de Atención Primaria, pediatras, neumólogos, alergólogos, pediatras neumólogos y pediatras alergólogos, otorrinolaringólogos, farmacólogos, farmacéuticos, enfermería general y especializada en patología respiratoria, educadores, profesores, pacientes y familiares de pacientes.
Búsqueda de la evidencia. Partiendo de la anterior edición de la GEMA², editada en 2009, y siguiendo las recomendaciones para la Actualización de Guías de Práctica Clínica del Sistema Nacional de Salud³, los miembros del Comité Ejecutivo realizaron una búsqueda sistemática, con evaluación y selección de las publicaciones aparecidas sobre asma desde 2009 hasta 2014 (Proyecto Pro-GEMA). Tras la revisión de las revistas de Neumología, Alergología, Pediatría, Atención Primaria, Medicina Interna y Otorrinolaringología de elevado factor de impacto, y su clasificación entre los dos primeros cuartiles de su especialidad, se seleccionó un total de 184 trabajos (resúmenes disponibles en http://www.progema-gemasma.com/foco.html) que se consideraron de interés para la actualización de la guía y que se proporcionaron a los redactores para su consideración. Además se les animó a efectuar sus propias búsquedas bibliográficas específicas para temas concretos. Para ello, se siguió el procedimiento habitualmente establecido en la elaboración de guías de práctica clínica⁴. Así mismo, se revisaron los listados de referencias de las principales guías de práctica clínica internacionales^5,6 para identificar las principales revisiones sistemáticas y ensayos clínicos. Estas guías se buscaron en bases de datos especializadas (National Guideline Clearinghouse, National Library of Guidelines) y en el metabuscador de literatura médica TRIP database. Se consultaron las bases de datos del Centre for Reviews and Dissemination (DARE y HTA database) y The Cochrane Library para identificar revisiones sistemáticas y evaluaciones de tecnologías adicionales. La búsqueda se completó con una actualización de las revisiones sistemáticas a partir de su fecha de búsqueda y de los estudios relevantes en las principales bases de datos electrónicas de estudios originales (MEDLINE, CENTRAL y EMBASE).
Clasificación de la evidencia. Para la evaluación de la calidad de la evidencia se utilizó la clasificación alfabética (tabla 0.1), que clasifica la calidad de la información en cuatro categorías (A, B, C, D) y que representan un gradiente de confianza en los resultados obtenidos en los estudios disponibles. La categoría A correspondería a una calidad alta y la D a una calidad muy baja. La confianza en los resultados, en el caso de la categoría A, es alta siendo improbable que estudios posteriores modifiquen los resultados disponibles. Por el contrario, en el caso de las categorías inferiores, C o D, la confianza será baja o muy baja, siendo muy probable que estudios posteriores modifiquen los resultados, o incluso la dirección del efecto. No obstante, se debe recordar que dicho sistema resulta muy útil para categorizar la evidencia de la eficacia terapéutica de fármacos u otras acciones terapéuticas, pero puede infravalorar otros. De ahí que las evidencias de los estudios que determinaron la idoneidad de algunas exploraciones diagnósticas se clasificaran con frecuencia con un nivel de evidencia C.
Teniendo en cuenta la reciente aparición de nuevos enfoques para clasificar la calidad de la evidencia basados en otros aspectos, además del diseño de los estudios^7,8, se utilizaron algunas características marco GRADE (http://www.gradeworkinggroup.org/), aunque éste no se aplicó de una forma completa.
Clasificación de las recomendaciones. Para clasificar la relevancia y consistencia de las recomendaciones clínicas, se siguió el mismo método empleado en la anterior edición de la GEMA², que las categorizaba en dos niveles: recomendaciones robustas (R1), que representan aquellas en las que el grupo elaborador de la guía confía que conlleven más beneficios que riesgos; y recomendaciones débiles (R2), aquellas en las que existe incertidumbre sobre si su aplicación conllevará más beneficios que riesgo. Para efectuar esta distribución en R1 o R2 se ponderó la calidad de la información (a partir de la clasificación mencionada), el balance entre los riesgos y los beneficios de las intervenciones, los costes (según literatura especializada disponible), así como los valores y preferencias de los pacientes (mediante la participación de miembros de la FENAER).
La categorización del nivel de recomendación se estableció mediante consenso, primero entre todos los redactores (ver más adelante método de trabajo seguido) y finalmente, con los revisores (mediante método Delphi), cuya opinión fue vinculante para la redacción final de todas las recomendaciones.
Redacción y consenso del texto y de las recomendaciones. El desarrollo del trabajo de redacción se basó en un sistema de consenso piramidal: de miniconsenso multidisciplinar temático por capítulo, a un gran consenso final entre todos los redactores y revisores. Tomando como base el documento elaborado en la anterior edición y las nuevas referencias bibliográficas sobre asma aparecidas desde 2009 hasta 2015, un grupo de redactores y coordinadores formado por expertos provenientes de las sociedades científicas participantes efectuaron una nueva redacción (incluidas la clasificación de la evidencia y de las recomendaciones) del fragmento del capítulo que se les asignó. Los redactores enviaron sus textos a cada uno de los coordinadores de cada capítulo, formado por los miembros del Comité Ejecutivo de la GEMA. Tras la unificación y revisión de los textos por el coordinador del capítulo, éste remitió el borrador del mismo a todos los redactores del capítulo, para efectuar el primer consenso parcial. Tras las modificaciones se fusionaron todos los capítulos en un solo documento, que a su vez fue de nuevo enviado a todos los redactores y coordinadores para su discusión telemática (y cuando se precisó, en grupos de trabajo, presencial) y aprobación. El documento resultante se remitió a expertos en metodología de guías de práctica clínica del INPECS (Instituto para la Excelencia Clínica y Sanitaria), que efectuaron una revisión crítica de la metodología y redacción del texto y recomendaciones. Tras dichas modificaciones y mejoras, finalmente, las recomendaciones fueron revisadas y consensuadas (mediante método Delphi) por un grupo de expertos en asma provenientes de las sociedades participantes. Las recomendaciones que no alcanzaron un determinado nivel de consenso fueron eliminadas del documento final.
Quality of life of adolescents with asthma: The role of personality, coping strategies, and symptom reporting
2011, Journal of Psychosomatic Research
The aim of this study was to test which personality traits were related to quality of life (QOL) of adolescents with asthma, and whether relations between personality and QOL were mediated by coping strategies and symptom reporting.
A sample of 405 12 to 16-year-olds with asthma completed questionnaires on personality, coping, symptom reporting, and QOL (overall QOL and positive effects QOL). The direct relations between personality traits and QOL, as well as mediation pathways were tested with structural equation modeling.
Adolescents high on extraversion and low on neuroticism had better overall QOL, while adolescents high on agreeableness had better positive-effects QOL. The coping strategy restricted lifestyle fully mediated the relation between extraversion and overall QOL, the relation between neuroticism and overall QOL was fully mediated by symptom reporting and the coping strategy worrying about asthma. The coping strategies positive reappraisal and hiding asthma fully mediated the relation between agreeableness and positive-effects QOL.
The results show that personality is related to QOL in adolescents with asthma. These relations were fully mediated by coping and symptom reporting. This study sheds light on the underlying mechanism why personality is associated with QOL. The results of this study will help to understand what determines QOL in patients with chronic illness in general and adolescents with asthma specifically. Furthermore, the results will help to design interventions that could facilitate minimizing the negative effects of having asthma on the QOL of these adolescents.
Small-group, interactive education and the effect on asthma control by children and their families
2009, CMAJ. Canadian Medical Association Journal
Effective approaches to education about asthma need to be identified. We evaluated the impact on asthma control by children and their caregivers of an intervention involving small-group, interactive education about asthma.
We randomly assigned children who visited an emergency department for an exacerbation of asthma (n = 398) to either of 2 groups. Children assigned to the control group followed the usual care recommended by their primary care physician. Those assigned to the intervention group participated in a small-group, interactive program of education about asthma. We examined changes in the number of visits to the emergency department during the year after the intervention.
During the year after enrolment, children in the intervention group made significantly fewer visits to the emergency department (0.45 visits per child) compared with those in the control group (0.75 visits per child) (p = 0.004). The likelihood of a child in the intervention group requiring emergency care was reduced by 38% (relative risk [RR] 0.62, 95% confidence interval CI 0.48–0.81, p = 0.004). Fewer courses of oral corticosteroids (0.63 per child) were required by children in the intervention group than by those in the control group (0.85 per child) (p = 0.006). We observed significant improvements in the symptom domain of the questionnaire on pediatric asthma quality-of-life (p = 0.03) and the activity domain of the questionnaire on caregivers' quality of life (p = 0.05). Parents of children in the intervention group missed less work because of their child's asthma after participating in the educational program (p = 0.04). No impact on hospital admissions was observed.
Education about asthma, especially in a small-group, interactive format, improved clinically important outcomes and overall care of children with asthma.
Une version française de ce résumé est disponible à l'adresse www.cmaj.ca/cgi/content/full/cmaj.080947/DC1

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Original articleLearning to cope with asthma: a behavioural self-management program for children

Abstract

Patient Educ Counsel

Patient Educ Couns

J Allergy Clin Immunol

Patient Educ Couns

J Allergy Clin Immunol

Patient Educ Counsel

Consensus bij kinderen met astma

NtVG

Morbidity and school absence caused by asthma and wheezing illness

Arch Disease Child

Omgaan met CARA

To help patients control asthma the clinician must be a good listener and teacher

Thorax

Living with asthma. I: Genesis and development of a self-management program for childhood asthma

J Asthma

Self-management education of children with asthma: AIRWISE

Am J Public Health

A randomized trial of A.C.T. (Asthma Care Training) for kids

Pediatrics

Communication within low income families and the management of asthma

Patient Educ Couns

Voorlichting aan astma-patiënten en hun ouders

Bijblijven

Self-management and asthma

Children's conceptions of the body interior

Developmental stages in children's conceptions of illness

Cognitive development of chronically ill children

The young Damocles: the adolescent at high risk for serious or fatal status asthmaticus

Clin Rev Allergy

Psychologische en educatieve behandelingsprogramma's voor kinderen met astma

Illness behaviour of patients with asthma

Original article
Learning to cope with asthma: a behavioural self-management program for children