Non-medical interventions for individuals with Rett syndrome: A systematic review

For my Blog this week I am reporting on a review I recently read on the use of 'non-medical interventions' with girls with Rett syndrome (or RTT); a rare neuro-developmental disorder occurring in about one in every 10,000 girls. Perhaps unsurprisingly it is titled:

'Non-medical interventions for individuals with Rett syndrome: A systematic review' by Annika Amoako & Dougal Hare (Nov, 2019) Journal of Applied Research in Intellectual Disabilities, DOI: 10.1111/jar.12694.

From the abstract: research into Rett syndrome was identified as including various medical interventions, but non-medical interventions were found to be 'relatively under-researched' (no surprises there then!). The authors of this paper therefore conducted a systematic search for peer-reviewed papers investigating the use of any such non-medical interventions for girls with Rett syndrome. 

13 studies were reviewed and the interventions were generally described as being primarily 'communication interventions' with these interventions including: 'music, assistive technology, augmentative and alternative communication strategies, attentional training and cognitive rehabilitation training'. 

The findings of the paper were that: 'all studies reported positive outcomes across communication, quality of life, brain stem activity, physical fitness and a reduction in stereotyped behaviour'. However the review highlighted a 'paucity of high-quality research'  in this non-medical area. 

... but interestingly, the paper finishes with this final, highly referenced paragraph:

'The early focus on parental involvement in interventions has diminished over the years, with increased focus on utilizing recent advanced software. Given most children reside in the family home, a broader research focus is required to incorporate the impact of family and interaction interventions as opposed to solely software-led assistive technology. Future research should investigate interventions that have been researched within the remit of intellectual disabilities to investigate its utility in the RTT population. For example, there is a growing evidence base of the use of Intensive Interaction in individuals with severe and profound intellectual disabilities. Research has reported on improved pre-verbal communication skills, maintenance of social engagement and relationships after an Intensive Interaction intervention (Anderson, 2006; Argyropoulou & Papoudi, 2012; Firth, Elford, Leeming, & Crabbe, 2008; Kellett, 2000, 2005; Samuel, Nind, Volans, & Scriven, 2008; Watson & Knight, 1991; Zeedyk, Caldwell, & Davies, 2009; Zeedyk, Davies, Parry, & Caldwell, 2009).'

And of course, I agree. I am not saying that 'software-led assistive technology' will not have an important part to play in helping such children, but given that most children do 'reside in the family home' surely any improvement in 'pre-verbal communication skills, maintenance of social engagement and relationships' is vitally and profoundly important in developing improved 'quality of life', for the children with Rett syndrome, and also their families as well!