ABSTRACT
Introduction: Autistic men and women are more likely to experience health issues than the general population, although the available epidemiological studies addressing co-occurrence conditions are limited. This is the first Spanish epidemiologic study addressing the health profile and poor-health exacerbating factors in individuals of all ages with autism spectrum disorder (ASD). Methods: We analyzed 2,629 registries extracted from Autism Spain's sociodemographic registry (November 2017-May 2020). A descriptive health data analysis was conducted to assess the prevalence of other conditions associated to ASD in the Spanish population. Nervous system disorders (12.9%), mental health diagnoses (17.8%), and other comorbidities (25.4%) were reported. Men-to-women ratio was 4:1. Results: Women, elder individuals and those with intellectual disability (ID) were at an increased risk of health comorbidities and psychopharmacological exposure. Women were also more prone to severe intellectual and functional impairment. Nearly all individuals had difficulties in their adaptative functioning, especially those with ID (50% of the population). Almost half of the sample received psychopharmacological treatments starting from infancy and early childhood, mostly antipsychotics and anticonvulsants. Discussion: This study represents an important first approach to the health status of autistic people in Spain and can contribute to the development of public policies and innovative health strategies.
ABSTRACT
Among the factors that influence the quality of life of people with Autism Spectrum Disorder (ASD), physical activity and sport are key dimensions of physical well-being. Few studies take into account the perspectives of people with ASD in order to understand the extent of physical well-being and their subjective perception of it. The development of a system of quality of life indicators related to physical activity and sport for people with ASD and their analysis is the aim of this study, providing guidelines for improvement. A study was carried out with a sample of 276 people, professionals (n = 143), family members (n = 73) and people with ASD (n = 60). The people with ASD in the sample belonged to three age categories: children aged 8-12 years, adolescents aged 12-18 years and adults over 18 years. The research team used a qualitative methodology in the collection of information. They adapted three questionnaires, with validated quality of life scales, to guide the interviews and also applied them in the design of the focus group protocols. Subsequently, the research team analysed the information collected in the focus groups with families and professionals using a DELPHI method. A system for coding the responses and qualitative analysis of the responses was also prepared for the analysis of the data by the research team. Finally, the information obtained was compared with a group of representative experts. The results concluded with the elaboration of a system of quality of life indicators related to the dimension of physical well-being, as well as guidelines and proposals that bring together the perspectives of people with ASD in relation to the practice of sport and physical activity. There is a need to increase the practice of sport among people with ASD in order to promote their health, social participation and personal satisfaction. It is concluded that it is not possible to obtain a broad picture of the quality of life of people with ASD and their families due to lack of information. However, the method and the results obtained represent a first approach at national level to increase knowledge about the quality of life of people with ASD.
ABSTRACT
Introducción. El concepto de calidad de vida tiene gran importancia en la intervención dirigida a las personas con discapacidad. Resulta indiscutible que el alcance de una calidad de vida satisfactoria debe ser el objetivo de las intervenciones clínicas dirigidas al colectivo de personas con trastorno del espectro autista (TEA), y un elemento clave para diseñar los tratamientos necesarios que mejoren el pronóstico de desarrollo futuro. A pesar de ello, el conocimiento sobre las condiciones objetivas y subjetivas que predicen una mayor satisfacción en las personas con TEA es aún muy limitado. Objetivo. Explorar la percepción de la calidad de vida que experimenta un grupo de niños y adolescentes con TEA sin discapacidad intelectual asociada. Pacientes y métodos. Muestra de 12 niños y 11 adolescentes con TEA sin discapacidad intelectual asociada. Dependiendo de la edad, se les aplicó el cuestionario de calidad de vida específico. Resultados. Ambos grupos informan positivamente sobre su calidad, sin que existan diferencias en las dimensiones básicas. No obstante, en el caso de los adolescentes se obtienen puntuaciones más bajas en el área de autodeterminación en comparación con las demás. Conclusiones. La discusión se centra en la identificación de las dimensiones más relevantes para la calidad de vida, las implicaciones para la intervención y la necesidad de adecuar las metodologías empleadas para la evaluación subjetiva de estos factores, debido a que las características de los TEA pueden alterar las habilidades necesarias para la valoración de la experiencia personal y requerir la adaptación de los procedimientos empleados (AU)
Introduction. The concept of quality of life is of great importance for interventions directed at people living with disabilities. It is undeniable that the achievement of a satisfactory quality of life should be the objective of clinical interventions that are directed at the group of people with autism spectrum disorder (ASD) and should be a key element in the design of the treatments that are needed to improve the prognosis of future development. Nevertheless, knowledge of both the objective and the subjective conditions that predict greater quality of life satisfaction in people with ASD is still very limited. Aim. To explore the perception of the quality of life experienced by a group of children and adolescents with ASD without intellectual disability. Patients and methods. A sample of 12 children and 11 adolescents with ASD without intellectual disability. In accordance with their age, they were administered the corresponding quality of life questionnaires. Results. Both groups reported positively on their quality of life, without any differences in the basic dimensions. Nevertheless, in the case of adolescents, very low scores were obtained in the area of self-determination in comparison with their scores in other areas. Conclusions. The discussion centers on the identification of the most relevant dimensions for quality of life, the implications for intervention, and the need to adapt the methodologies in use for the subjective evaluation of those factors, due to the characteristics of ASD that can affect the capabilities necessary for the evaluation of personal experience, and may require the adaptation of the procedures that are employed (AU)
