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Consensus guidelines on managing Rett syndrome across the lifespan
Cary Fu1, Dallas Armstrong2,3, Eric Marsh2,3
1Pediatrics and Neurology, Vanderbilt University Medical Center, Nashville, Tennessee, USA.
Insights
Health professionals can now access consensus-based guidance for managing Rett syndrome (RTT), a complex neurodevelopmental disorder. This best practice guide addresses multisystem comorbidities, improving care for individuals with RTT throughout their lifespan.
Area of Science:
- Neuroscience
- Genetics
- Pediatrics
Background:
- Rett syndrome (RTT) is a severe neurodevelopmental disorder with significant medical comorbidities.
- Current therapeutic guidance for RTT care is lacking peer-reviewed, consensus-based standards.
- Multisystem issues in RTT necessitate comprehensive management by healthcare professionals.
Purpose of the Study:
- To establish consensus-based guidance for the best practice care of individuals with Rett syndrome.
- To address the complex medical comorbidities associated with RTT.
- To support health professionals and families in managing RTT.
Main Methods:
- A modified Delphi approach was employed, informed by existing literature.
- A consensus process involving health professionals was utilized to develop the guidance.
- Guidance was developed to assist in addressing the multisystem concerns of RTT.
Main Results:
- Typical RTT presentation occurs in early childhood with recognizable clinical features.
- Multisystem comorbidities develop over the lifespan, requiring coordinated care.
- A consensus-driven checklist and detailed references for best practice guidance were created.
Conclusions:
- Primary care providers and specialists must manage complex RTT comorbidities within a holistic framework.
- Guidance is provided to optimize outcomes for individuals with RTT, considering their extended life expectancy.
- The consensus guidance aims to improve the quality of care for individuals with Rett syndrome and their families.
Background:
Rett syndrome (RTT) is a severe neurodevelopmental disorder with complex medical comorbidities extending beyond the nervous system requiring the attention of health professionals. There is no peer-reviewed, consensus-based therapeutic guidance to care in RTT. The objective was to provide consensus on guidance of best practice for addressing these concerns.
Methods:
Informed by the literature and using a modified Delphi approach, a consensus process was used to develop guidance for care in RTT by health professionals.
Results:
Typical RTT presents early in childhood in a clinically recognisable fashion. Multisystem comorbidities evolve throughout the lifespan requiring coordination of care between primary care and often multiple subspecialty providers. To assist health professionals and families in seeking best practice, a checklist and detailed references for guidance were developed by consensus.
Conclusions:
The overall multisystem issues of RTT require primary care providers and other health professionals to manage complex medical comorbidities within the context of the whole individual and family. Given the median life expectancy well into the sixth decade, guidance is provided to health professionals to achieve current best possible outcomes for these special-needs individuals.
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