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Data is Power: How Denmark is Using Data to Drive Change

Learn how a small team in Denmark is creating a bright future for DHH children in Denmark.

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By Melody Bertrand

Today, by law, all Danish children who are deaf and hard of hearing (DHH) who use hearing technology are offered three years of auditory-verbal therapy (AVT) as an integrated part of their treatment.

This amazing feat of government and clinical cooperation took 15 years to achieve, and was not possible without the consistent tracking of measurable results. Lone Marianne Percy-Smith, Jane Lignel Josvassen, Cecilia Fernandez Samar, and Signe Wischmann share how they have helped shape a bright future for DHH children in Denmark.

How It Started

In 2007, Lone and Jane returned from a trip to Australia inspired to offer AVT to children in Denmark who receive a cochlear implant (CI). They began with a small group of DHH children and offered AVT to them through a clinical setting. Using these results, they successfully petitioned the Danish government to fund longer clinical trials with more children.

Over the course of several years, the data continued to show the success of these children in learning Listening and Spoken Language when provided with AVT services. Lone and her team were able to use results from standard speech and language tests to show that AVT does improve the language abilities of children who use CIs.

“Data is power,” said Lone. “You need to have outcome measurements; you need to prove that this treatment actually works and that it is worthwhile to provide both the CI and the rehabilitation afterwards.”

To convince the Danish government to provide initial funding, Lone, her team, and a patient organization, Decibel, began working with a group of 55 children with all types of hearing loss to show what was possible. “The outcomes were very convincing from a political point of view,” explains Lone. “We showed that if you provide technology and AVT early, the quality of life improves. The children are able to keep up in the education system.”

How It’s Going

What started as a small, short-term research study turned into a large, long-term study of children from birth, following them into their teens and high school. The ongoing research has expanded to include study of social and emotional well-being.

Children have lots to play with in the waiting room at an audiology office.

What is unique about the Danish model is that the group driving the research project began in one clinical setting, but then expanded to provide AVT as part of all the audiology departments in Denmark hospitals. Today, every child who receives either a CI or a hearing aid is immediately enrolled in AVT within the department, and is able to receive three years of AVT from the same department.

The push to offer AVT services as part of the medical system was not without its challenges. Initially, there was strong pushback from the deaf community that relies on Danish Sign Language to communicate. But early data was based on a parent communication model, where parents who have DHH children use spoken language. Therefore, the research data showed that it was more effective to teach a child to use spoken language instead of signed language.

Danish government and societal expectations include a mindset where everyone works and does their part to contribute to society. With data that shows how DHH children who learn to listen and talk can attend regular school, the government has been willing to fund more study of the use of AVT.

“Parents and government want their children to thrive and have a good education,” explained Jane.

“And in Denmark, usually both parents work so we have to find ways to implement auditory-verbal therapy and strategies into their daily lives,” added Cecilia.

Ongoing Support

The Denmark team initially followed the first group of students into school to see how they were adapting. During that process they created courses for both the teachers and the parents. They also wrote a book to provide parents of DHH children guidance as they transition into school. Today, parents receive the book for free from their hospital.

Another tool the team developed was a virtual reality app that helped the children learn how to position themselves in different noise environments. This helped the children understand where and how different sound situations impact their ability to hear and communicate.

Future Challenges

All health systems go through change and funding challenges. For Denmark, continuing to prove the need for three years of AVT will be key in providing ongoing support for DHH children. “We have to keep track of the data and keep showing why it’s important to have the right number of therapists and therapy years,” said Cecilia.

“Always, data is powerful,” added Lone. “We are implementing a quality assurance model in the hospital, so we can keep track of the data.”

Another area the team in Denmark continues to look at is social well-being. Following the initial cohort of DHH children, the team continues to collect data about the children that shows they have adapted well socially and that the therapy they received contributed to them integrating into typical school and societal areas.

What Can You Take from This?

Document, document, document…keep track of everything that you are doing. “We wouldn’t have been here without the data. Nobody would have believed us if it wasn’t for the data,” emphasized Lone.

“And simplify the data,” added Cecilia. “Make it simple and understandable.” When talking to officials in your area, it is important to provide them with numbers and information that is easy to understand and repeat to others.

Those interested in building an AVT program in their area should talk to their officials and healthcare providers. Find a model that will work within the systems of your area, and keep track of everything you do as you move along.

To learn more about the work in Denmark, please look at these additional articles:

AVT research project 2013-2017:

  • Percy-Smith, L., Tønning, T. L., Josvassen, J. L., Mikkelsen, J. H., Nissen, L., Dieleman, E., Hallstrøm, M., & Cayé-Thomasen, P. (2018). Auditory verbal habilitation is associated with improved outcome for children with cochlear implant. Cochlear implants international, 19(1), 38–45.
  • Percy-Smith, L., Hallstrøm, M., Josvassen, J. L., Mikkelsen, J. H., Nissen, L., Dieleman, E., & Cayé-Thomasen, P. (2018). Differences and similarities in early vocabulary development between children with hearing aids and children with cochlear implant enrolled in 3-year auditory verbal intervention. International journal of pediatric otorhinolaryngology, 108, 67–72.
  • Josvassen, J., Percy-Smith, L., Tønning, T., Dieleman, E., Pihl, T., Hallstrøm, M., & Cayé-Thomasen, P. (2019). Parental Perceptions of Auditory-Verbal Therapy—A Longitudinal Study of Danish Children with Hearing Loss. The Volta Review, 119(1), 4–28.

IHEAR research project 2017-2021:

  • Percy-Smith, L., Wischmann, S., Josvassen, J. L., Hallstrøm, M., Laplante-Lévesque, A., Sorgenfrei, M. G., & Caye-Thomasen, P. (2020). Evaluation of a sentence test in noise in children with hearing impairment. Danish medical journal, 67(1), A06190358.
  • Percy-Smith, L., Wischmann, S., Josvassen, J. L., Schiøth, C., & Cayé-Thomasen, P. (2021). Language Development for the New Generation of Children with Hearing Impairment. Journal of clinical medicine, 10(11), 2350.
  • Wischmann, S., Josvassen, J. L., Schiøth, C., & Percy-Smith, L. (2022). History re-written for children with hearing impairment. International journal of pediatric otorhinolaryngology, 152, 110991.

Los datos son poder: cómo Dinamarca utiliza los datos para impulsar el cambio

Actualmente, por ley, a todos los niños daneses con sordera e hipoacusia que utilizan tecnología auditiva se les ofrecen tres años de terapia auditivo-verbal (TAV) como parte integrada de su tratamiento.

Esta magnífica hazaña de cooperación gubernamental y clínica tardó 15 años en lograrse y no fue posible sin un seguimiento coherente de resultados mensurables. Lone Marianne Percy-Smith, Jane Lignel Josvassen, Cecilia Fernandez Samar y Signe Wischmann nos explican cómo ayudaron a forjar un futuro brillante para los niños con sordera e hipoacusia en Dinamarca.

Cómo empezó todo

En 2007, Lone y Jane regresaron de un viaje a Australia entusiasmadas con la idea de ofrecer sesiones de TAV a los niños daneses que recibían un implante coclear (IC). Empezaron con un pequeño grupo de niños con sordera e hipoacusia y les facilitaron sesiones de TAV en un entorno clínico. Haciendo uso de estos resultados, solicitaron con éxito al gobierno danés que financiara ensayos clínicos de mayor duración y con un mayor número de niños.

A lo largo de varios años, los datos siguieron mostrando el éxito de estos niños en el aprendizaje de la Escucha y el Lenguaje Hablado cuando se les prestaban servicios de TAV. Lone y su equipo utilizaron los resultados de pruebas estándar de habla y lenguaje para demostrar que la TAV mejoraba las capacidades lingüísticas de los niños que usaban IC.

«Los datos son poder», afirma Lone. «Es necesario disponer de mediciones de resultados; hay que demostrar que este tratamiento funciona realmente y que merece la pena proporcionar tanto IC como una rehabilitación posterior».

Para convencer al gobierno danés de que aportara una financiación inicial, Lone y su equipo, junto a Decibel, una organización de pacientes, empezaron a trabajar con un grupo de 55 niños con todo tipo de pérdida auditiva para demostrar lo que era posible. «Los resultados fueron muy convincentes desde el punto de vista político», explica Lone. «Demostramos que, si se proporciona tecnología y TAV en una fase temprana, se mejora la calidad de vida. Los niños pueden seguir el ritmo del sistema educativo ordinario».

Cuál es la situación actual

Lo que empezó siendo un pequeño estudio de investigación a corto plazo se convirtió en un gran estudio a largo plazo de niños desde el nacimiento a la adolescencia. La investigación en curso se ha ampliado para incluir el estudio del bienestar social y emocional.

La singularidad del modelo danés radica en que el grupo impulsor del proyecto de investigación empezó en un entorno clínico, pero posteriormente se amplió para ofrecer la TAV en todos los departamentos de audiología de los hospitales daneses. En la actualidad, todos los niños que reciben un implante coclear o un audífono se inscriben de inmediato en las sesiones de TAV del departamento y pueden recibir tres años de TAV.

El impulso para ofrecer servicios de TAV como parte del sistema médico no estuvo exento de dificultades. Al principio, la comunidad de personas con sordera, que utiliza la lengua de signos danesa para comunicarse, se opuso enérgicamente. Sin embargo, los primeros datos se basaron en un modelo de comunicación parental, en el que los padres de hijos con sordera o hipoacusia utilizaban el lenguaje hablado. Al respecto, en los datos de la investigación se demostró que era más eficaz enseñar a un niño a utilizar el lenguaje hablado que la lengua de signos.

En las expectativas del gobierno danés y de la sociedad existe la mentalidad de que todo el mundo debe trabajar y poner de su parte para contribuir a la sociedad. Con datos que demuestran que los niños con sordera e hipoacusia que aprenden a escuchar y hablar se pueden incorporar al sistema educativo ordinario, el gobierno se ha mostrado dispuesto a financiar más estudios sobre el uso de la TAV.

«Los padres y el gobierno quieren que los niños prosperen y tengan una buena educación», explica Jane.

«Y en Dinamarca, normalmente ambos padres trabajan, por lo que tenemos que encontrar la manera de aplicar las estrategias y la terapia auditivo-verbal en su vida cotidiana», añade Cecilia.

Apoyo continuo

Al principio, el equipo de Dinamarca siguió al primer grupo de alumnos en la escuela para ver cómo se adaptaban. Durante este proceso desarrollaron cursos tanto para los maestros como para los padres. También escribieron un libro para orientar a los padres de niños con sordera e hipoacusia en su transición a la escuela. Hoy en día, los padres reciben el libro gratuitamente en su hospital.

Otra herramienta desarrollada por el equipo fue una aplicación de realidad virtual que ayudó a los niños a aprender a situarse en distintos entornos ruidosos. Sirve para que los niños comprendan dónde y cómo influyen las distintas situaciones sonoras en su capacidad de oír y comunicarse.

Retos de futuro

Todos los sistemas sanitarios atraviesan cambios y dificultades de financiación. En el caso de Dinamarca, seguir demostrando la necesidad de facilitar una TAV de tres años será clave para prestar un apoyo continuado a los niños con sordera e hipoacusia. «Tenemos que hacer un seguimiento de los datos y seguir demostrando por qué es importante contar con el número adecuado de terapeutas y años de terapia», afirma Cecilia.

«Siempre, los datos son poderosos», añade Lone. «Estamos implantando un modelo de garantía de calidad en el hospital, para poder hacer un seguimiento de los datos».

Otra área que el equipo de Dinamarca sigue estudiando es el bienestar social. Haciendo un seguimiento de la cohorte inicial de niños con sordera e hipoacusia, el equipo sigue recopilando datos sobre estos niños, que demuestran que se han adaptado bien socialmente y que la terapia que recibieron sirvió para que se integraran en ámbitos escolares y sociales ordinarios.

¿Cuáles son las conclusiones?

Documente, documente, documente… lleve un registro de todo lo que haga. «No habríamos llegado hasta aquí sin los datos. Nadie nos habría creído de no ser por los datos», subraya Lone.

«Y es importante simplificar los datos», añade Cecilia. «Que sean sencillos y comprensibles». Al hablar con los funcionarios responsables de su zona, es importante facilitarles cifras e información que sean fáciles de entender y de comunicar a otras personas.

Las personas interesadas en crear un programa de TAV en su zona deben hablar con funcionarios responsables y profesionales sanitarios. Se debe encontrar un modelo que funcione en los sistemas de la zona en cuestión y llevar un registro de todo lo que se haga a medida que se avanza.

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