Establishing expert opinion to reach a consensus on how to best define and investigate developmental regression in children: A Delphi study

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Date Posted

Research Study Description

This study aims to establish a consensus among parents, caregivers, and clinicians on how to best define, assess, and investigate developmental regression. Developmental regression describes the loss of already acquired skills; it is otherwise known as loss of skills. It can be seen in a small number of conditions (for example, autism, Rett syndrome, Landau-Kleffner syndrome) and is most commonly associated with autism. Currently, there is no standardised definition for developmental regression nor method of assessment or investigative workup. Thus, a survey gathering the opinion of both clinicians and lived experience is valuable to establish a patient and family-centred consensus in this field. This study will use the Delphi technique. The Delphi technique describes a multi-stage survey whereby the results of each round shape the questions asked in the subsequent round. This study will last for a maximum of three survey rounds.

Dear parents, caregivers, and clinicians,

We invite you to participate in a student-led Delphi study.

The study aims to gather information from parents and caregivers with lived experience and clinicians to achieve a consensus for definitions, assessments and investigations for children presenting with developmental regression.

Your participation will ensure a patient and family-centred approach to clinical practice in this field and/or expert clinical perspectives. The way you answer each question will tailor the questions that follow so they are suited to your experience.

Specifically, we would like your opinion for this and one to two more surveys sent via email using Qualtrics. Each survey should take up to 20 minutes to complete.

Thank you for considering participation. Please click on the link below to view our participant information sheet and, if you wish, commence the first survey.

https://monashred.au1.qualtrics.com/jfe/form/SV_9LkhNuBo0GbPtsO

Yours Sincerely,

Prof Katrina Williams, Prof Michael Fahey, Assoc/Prof Matthew Hunter, Prof Goin-Kochel, Dr Absoud, Dr Furley, Dr Mehra and Miss Gawade

email:  Katrina.Williams@monash.edu