Review of a specialist Rett syndrome clinic from 2003 to the COVID pandemic
Author Information
Author(s): Emily Sloper, Megan Hunt, Angus John Clarke
Primary Institution: Cardiff University School of Medicine
Conclusion
The Cardiff Rett clinic provided significant benefits to patients and their families through specialist advice and management recommendations, although the shift to virtual consultations during COVID-19 presented challenges.
Supporting Evidence
- Families rated the clinic highly, with many finding it helpful and praising the expertise of the clinicians.
- Many families expressed the value of having multiple specialists available in one appointment.
- Respondents highlighted the importance of not having to explain their child's condition to unfamiliar clinicians.
Takeaway
This study looked at a special clinic for kids with Rett syndrome and how it helped families, especially during the COVID pandemic when many felt alone.
Methodology
The study involved a retrospective case note review and a survey of parents and carers about their experiences with the clinic.
Limitations
The study was a service evaluation rather than research, relying on the quality of case notes and not including all individuals who attended the clinic in the interview process.
Participant Demographics
Of the 103 patients, 97 were female and 6 were male, with ages ranging from 1.93 to 56.4 years.
Digital Object Identifier (DOI)
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