Development and testing of methods to record and follow up spells in patients with alternating hemiplegia of childhood
- Creators
- Sentmanat, Maria K
- Papadopoulou, Maria T
- Prange, Lyndsey
- Fons, Carmen
- De Grandis, Elisa
- Vezyroglou, Aikaterini
- Boggs, April
- Su, Samantha
- Comajuan, Marion
- Wuchich, Jeffrey
- Jóhannesson, Sigurður
- Huaynate, Jennifer Anticona
- Stagnaro, Michela
- Megvinov, Andrey
- Patel, Shital
- Arzimanoglou, Alexis
- Vavassori, Rosaria
- Panagiotakaki, Eleni
- Mikati, Mohamad A
- Others:
- Sentmanat, Maria K
- Papadopoulou, Maria T
- Prange, Lyndsey
- Fons, Carmen
- De Grandis, Elisa
- Vezyroglou, Aikaterini
- Boggs, April
- Su, Samantha
- Comajuan, Marion
- Wuchich, Jeffrey
- Jóhannesson, Sigurður
- Huaynate, Jennifer Anticona
- Stagnaro, Michela
- Megvinov, Andrey
- Patel, Shital
- Arzimanoglou, Alexi
- Vavassori, Rosaria
- Panagiotakaki, Eleni
- Mikati, Mohamad A
Description
Background: Developing methods to record Alternating Hemiplegia of Childhood (AHC) spells is essential for clinical trials and patient care. Objectives: Test the following hypotheses: 1) Video-library training improves participants' ability to correctly identify AHC spells. 2) A custom-designed event-calendar with weekly reviews results in consistent documentation of such events over time. 3) Use of an electronic diary (e-Diary) to register events is a useful tool. Methods: 1) A video-library of AHC type spells was developed along with specific training; the effect of the training was tested in 36 caregivers. 2) An event-calendar was similarly developed and provided to 5 caregivers with weekly videoconference meetings for 8 weeks. 3) An e-Diary was developed and offered to 33 patients; time of usage and caregivers' feedback (telephone interview) were analyzed. Results: 1) Video-library training: Wilcoxon test showed improvement in caregiver identification of spells (p = 0.047), Cohen's Kappa demonstrated high degree of agreement between caregivers'-experts' classifications (>0.9). 2) Event-calendar: 96.42% of entries had complete information; this did not change during follow up (p = 0.804). 3) e-Diary: whereas 52% of respondents used the e-Diary when offered (duration: 10.5 ± 8.1 months), 96.3% indicated they would use it in future studies. Those who used it for 13 months, were very likely to use it during the rest of that year. Conclusions: Video-library training improved spell identification. Calendar with weekly reviews resulted in a sustained and consistent record keeping. Caregivers' e-Diary feedback was encouraging with long-term usage in many. These approaches could be helpful for AHC and, potentially, in similar disorders.
Additional details
- URL
- https://hdl.handle.net/11567/1145837
- URN
- urn:oai:iris.unige.it:11567/1145837
- Origin repository
- UNIGE