Surveying parental experiences of receiving a diagnosis of developmental coordination disorder (DCD)

Abstract

Receiving a diagnosis of a developmental disorder has a major impact on an individual and their family. However, little is known about parental experiences of having a child diagnosed with developmental coordination disorder (DCD). In this study, 228 parents completed an online survey about their experiences of obtaining a diagnosis of DCD for their child in the United Kingdom. Results demonstrated that, on average, a diagnosis was confirmed two and a half years after parents initially sought professional help in relation to their child's motor difficulties. Satisfaction with the overall diagnostic process was mixed: 45% of parents were dissatisfied (26% = very dissatisfied, 19% =quite dissatisfied) and 39% were satisfied (16% =very satisfied, 23% = quite satisfied). Four factors were predictive of parental satisfaction with the overall diagnostic process: the stress of the diagnostic process; the manner of the diagnosing professional; satisfaction with post-diagnostic support; and the time taken to get a diagnosis. Postdiagnostic provision was the area in which parents reported most dissatisfaction; an unsurprising finding given that 43% of parents were not offered any practical help or support during the diagnostic process or in follow up appointments (although there was an indication that this was improving). Based on these findings (as well as previous research), we propose three key areas in which improvements in the diagnostic process for DCD are needed: (1) Greater awareness about DCD in order to facilitate earlier recognition; (2) Implementation of clear referral pathways, to reduce the time taken to receive a diagnosis; and (3) Increased post-diagnostic support within health and educational systems.

Diagnostic challenge and importance of the clinical approach of the Developmental Coordination Disorder

“…30 In the most favorable cases, after parents have experienced the frustration of consulting with various specialists, the diagnosis comes late, 29 because although motor difficulties are present since early development, most children are not diagnosed before the age of 5, when school requirements make the disorder evident. 18 To facilitate the diagnosis of DCD, a number of key questions have been described for use in the history taking process and there are suggestions on how to guide the physical examination. 15 There is also an algorithm on how to guide the diagnostic process based on the criteria outlined in DSM-5.…”

“…The first one is "to educate clinicians and the community at large to be able to identify children who are likely to have this disorder." 18,21 The second one is "to establish primary prevention strategies aimed at favoring psychomotor development" by offering opportunities for children to engage in a variety of motor experiences enabling them to reach their optimum potential. This could be accomplished through public policies linked to childhood, 33 which would facilitate the diagnosis by decreasing the frequency of children with a poor motor performance due to the lack of sensorimotor experiences.…”

“…In this regard, another study reported that the average time it took to make a diagnosis was two and a half years after parents had consulted about motor difficulties they observed in their children. 18 There has been a growing body of research on this disorder 19 and there are recommendations for its approach. [20][21][22] Most of these articles are in English, so it has been recommended to translate existing information to increase knowledge among health professionals.…”

Desafío diagnóstico e importancia del abordaje clínico del trastorno del desarrollo de la coordinación

“…A este respecto, otra investigación reportó que el tiempo promedio que demoró en concretarse el diagnóstico fue dos años y medio después de que los padres hubieran consultado por las dificultades motoras que observaban en sus hijos. 18 Se ha generado una creciente investigación r e s p e c t o d e e s t e t r a s t o r n o 1 9 y e x i s t e n recomendaciones para su abordaje. [20][21][22] La mayoría de estos artículos están en inglés, por lo que se ha recomendado traducir la información existente para aumentar el conocimiento entre los profesionales de la salud.…”

“…30 En los casos más favorables, luego de que los padres han experimentado la frustración de consultar a diversos especialistas, se llega al diagnóstico de manera tardía, 29 puesto que, a pesar de que las dificultades motrices se presentan desde el desarrollo temprano, la mayoría de los niños no son diagnosticados antes de los 5 años, cuando los requerimientos del contexto escolar hacen evidente el trastorno. 18 Para facilitar el diagnóstico del TDC, se ha descrito una serie de preguntas clave para utilizar en el proceso de anamnesis y hay sugerencias respecto de cómo orientar el examen físico. 15 Existe también un algoritmo de cómo orientar el proceso diagnóstico considerando los criterios descritos en DSM-5.…”