Doctor Tea is an online website designed to facilitate medical visits for those with autism spectrum disorder and other disabilities. People diagnosed with autism not only have greater medical needs than the general population, but also have particular characteristics that are often not accommodated by medical services. This lack of medical accommodation often creates a very complicated, and sometimes traumatic experience, when visiting medical facilities. Individuals with autism have great difficulty understanding social situations and contexts, such as medical tests or consultations, as well as difficulty in tolerating new situations and atypical sensory thresholds. Doctor Tea aims to reduce anxiety before medical consultations and procedures from a safe and well-known environment (school, home, etc.).
Material and methodThe website, www.doctortea.org, provides information and materials (videos, cartoon, 3D animations, pictogram sequences, etc.) about the most frequent medical procedures and practices for patients with autism. The website also offers information to the doctors and families of patients with autism about the most common medical problems associated with autism.
ResultsA total of 17,199 different users visited the website during 2015, with a total of 23,348 online visitors from more than 70 different countries since the website's release in November 2014.
ConclusionsThe familiarisation with the medical procedures and its environment appears to decrease the anxiety in patients with disabilities during medical visits, as well as optimising the effectiveness of their medical visits and tests.
Doctor Tea es una página web diseñada para facilitar las visitas médicas de las personas con trastornos del espectro del autismo y/o con otras discapacidades. Las personas con autismo en muchas ocasiones no solo tienen mayores necesidades médicas que la población general, sino que presentan, además, unas características particulares que hacen que acceder a los servicios médicos se convierta en una experiencia muy complicada e incluso a veces traumática. Estas personas tienen grandes dificultades para comprender situaciones y contextos con implicación social como una prueba o consulta médica; dificultad para tolerar situaciones nuevas; y umbrales sensoriales atípicos. Doctor Tea tiene como objetivo reducir la ansiedad ante consultas, procedimientos y profesionales médicos desde un ambiente seguro y conocido (colegio, casa, etc.).
Material y métodoLa página www.doctortea.org proporciona información y materiales (videos, dibujos animados, animaciones 3D, secuencias de pictogramas, etc.) sobre las prácticas médicas más frecuentes a las que los pacientes con trastornos del espectro del autismo se tienen que enfrentar. También ofrece información a los médicos sobre las características de estos pacientes y a las familias sobre los problemas médicos más frecuentemente asociados.
ResultadosDurante el año 2015, 17.199 usuarios diferentes visitaron la web. Desde su lanzamiento en noviembre de 2014 el número de visitantes fue de 23.348 personas procedentes de más de 70 países diferentes.
ConclusionesLa familiarización con el entorno y los procedimientos médicos parece disminuir la ansiedad frente a los mismos y permite optimizar la eficacia de las visitas médicas y las pruebas complementarias que las personas con discapacidad necesitan.
Individuals with autism spectrum disorders (ASD) not only have greater medical needs than the rest of the population,1–3 they also present some specific characteristics that make it possible that access to medical services could become a traumatic experience. Individuals with ASD: (1) have significant difficulties in understanding and in anticipating social situations and contexts such as those that occur in a medical test or visit to the doctor, where the doctor–patient interaction is essential for correct diagnosis and treatment of any disease; (2) can present a marked difficulty in recognising and expressing symptoms and, at times, their parents report that their pain threshold is above that of the general population,4 which means that their illnesses run the risk of getting worse before being detected; and (3) generally show a significant lack of flexibility and great rigidity when faced with adapting to new places and people, especially in situations that involve a certain amount of uncertainty and whose probability of unexpected changes is high (for example, in a hospital).
Children with ASD present a higher number of medical phobias when compared with children of their same mental age.5 They also present significantly greater levels of anxiety in relation to medical procedures than the general population.6,7
To respond to these difficulties, a pioneering experience began in 2009 in the Community of Madrid: the creation of a comprehensive medical programme for medical services for patients with ASD, set up in the Hospital General Universitario Gregorio Marañón.8 The main goal of this programme was to provide coordinated and specialised medical attention to the population with ASD in this community to cover their basic healthcare needs.9
From its opening in April 2009 through January 2016, 1910 patients were included in the AMI-ASD programme (with 79% being younger than 18 years old), a total of 17,845 consultations in Psychiatry and 8173 consultations in other specialities were handled, and a total of 3213 medical tests were performed. In the course of the activity of the AMI-ASD programme, the following factors became evident: (1) the advantage of having training before the visit and the medical tests, training centred on familiarisation with the clinical surroundings, and (2) the lack of easily available specific material for working on this prior desensitisation.
In our setting, there are some medical familiarisation experiences, above all in the educational environment. These attempt, through structured programmes based on desensitisation, to get their students used to the specifics of the healthcare setting (white coats, waiting times, diagnostic procedures, etc.). The programmes use “in vivo” elements, such as therapists disguised as doctors, and real medical devices. However, certain medical procedures and tests (such as a magnetic resonance scan, an orthopantomography or an electroencephalogram) are difficult to simulate, bearing in mind the lack of accessibility to these devices from an educational viewpoint.
Over the last decade, virtual reality has started to be used in systematic desensitisation procedures for the treatment of phobias, with considerable success.10–12 This use has been extended to individuals with autism,10,13 for whom it could be especially useful given the possibility that there might be better processing of visual information than auditory information.14 Both the results of previous studies11,15,16 and the day-to-day clinical practice seem to indicate that when there has been a prior anticipation, a specific training activity, a systematic desensitisation or a simple habituation to the procedures, patient anxiety is considerably reduced before, during and after such procedures.
Taking all of this into consideration, this programme was created to facilitate access to the medical setting, using a programme based on new technologies. The project was initially designed for patients with ASD. During the course of developing the project and in its diffusion through various forums, its usefulness became apparent for not only patients with autism, but also for other populations with other disabilities that share common characteristics of cognitive inflexibility and intolerance to changes. For that reason, these populations can benefit from the proposed methodology. The target population of the project was finally enlarged to the entire paediatric population. Healthcare professionals are another sector directly benefited, as it is foreseen that after using this material children with autism will come to consultations more calmly, a greater possibility of success in the examinations will be achieved and the time required for each consultation will be reduced.
MethodWith the goal of making the performance of medical tests and seeing the doctor in the hospital more understandable and less traumatic for patients with disabilities and, especially, those with autism, the website www.doctortea.org was designed. Specifically, the aims were: reduce the stress and anxiety generated in the patient before, during and after seeing the doctor; familiarise the healthcare professionals with the characteristics of the population with ASD and with the management of their disorder; and facilitate access by the families to medical information related to the health problems most prevalent in the population with ASD.
ProcedureWork groups were organised with personnel expert in medical services for patients with autism and professionals with experience in developing new technologies for autism. A set of professionals, medical procedures and healthcare spaces were chosen for the development of visual materials, bearing in mind the needs of the target population and the opportunity (Fig. 1). The material was designed and uploaded to a free, open access web platform (www.doctortea.org).
The population with ASD usually has learning processes initially based on the specific and the literal, then going later to learning from more abstract stimuli and situations,17,18 generalising what has been learned and consequently making their behaviour more flexible. There is also great heterogeneity in the intellectual level and in the language of these patients.19,20 Because of these factors, the project is offered in content of varying levels of complexity. The same content is shown in different presentation formats: cartoons, videos, 3D animations and real material from the hospital when the project originated (Hospital General Universitario Gregorio Marañón) and another 10 hospitals and healthcare centres at the national level. In addition to desensitisation material for patients, the website offers informative reference material for both families and professionals. This material attempts to answer frequent questions related to the health of the patient with ASD (for example, what are the health problems and illnesses most common in autism, how to prepare for a visit to the dentist, how a trip to the Emergency Room can be facilitated, etc.).
ResultsDuring 2015, 17,199 different users visited the website, representing an average of 1433 web users a month. Since its launch in November 2014, the number of different visitors (accumulated) was 23,348 people. Of the users that know the website and enter for the first time, 83.5% return to it. Visitors from more than 70 different countries have accessed the website, the 10 with the most visits being Spain, Argentina, Russia, the United States, Mexico, Chile, China, Peru, Venezuela and France.
Other qualitative outcomes include the interest of foreign institutions in translating the materials to other languages and the invitation to multiple scientific forums, family associations and professional associations to present the project.
Conclusions and discussionThe website Doctor Tea (www.doctortea.org) was developed within the AMI-ASD programme for comprehensive medical treatment for individuals with autism, after recognising the difficulties that these individuals have for access to medical services and the performance of medical tests. Working to facilitate medical access is especially relevant in the individuals with autism, given that these patients present greater difficulties than the general population in the processes required for access to appropriate medical treatment (tolerance for waiting, uncertainty and novelty, exposition to incomprehensible processes and social relations with strangers).
Doctor Tea was developed as a free, open access tool, which makes familiarisation with medical settings and procedures possible, and which seems to reduce anxiety in these situations and to allow optimisation of the efficacy of seeing the doctor and of the complementary medical tests needed. As far as we know, there is no other device or programme that permits the possibility of carrying out personalised familiarisation or desensitisation to the reference healthcare devices, from the patient's own home or from the school, for such an amount of tests or real settings that are so complete. In addition, the extra advantages of being able to use them with other related populations (children and adolescents, individuals with other disabilities, etc.) increase the potential usefulness of the tool.
Ethical responsibilitiesProtection of human and animal subjectsThe authors declare that no experiments on human beings or on animals have been performed for this research.
Confidentiality of dataThe authors declare that no patient data appear in this article.
Right to privacy and informed consentThe authors declare that no patient data appear in this article.
FundingFundación Orange.
Conflict of interestsThe authors have no conflicts of interest to declare.
Our thanks to the Fundación Orange for funding the project, and especially to Manuel Gimeno, Verónica Pensosi and Blanca Villamia for their work and enthusiasm in the project. To the Research Foundation of the Hospital Universitario Gregorio Marañón for project management, and to all those associations of relatives of individuals with autism, hospitals, healthcare centres and participating professionals, as without their selfless participation, this project would not have been possible. To José Romo, Carmen Moreno, Cloe Llorente, M. Luisa Dorado and María Mayoral for their encouragement in the initial phases of the project.
Please cite this article as: Boada L, Parellada M. Ir al médico sin miedo: www.doctortea.org para la habituación al entorno médico de pacientes con autismo. Rev Psiquiatr Salud Ment (Barc). 2017;10:28–32.