Leki ratujące życie w epilepsji - program samoopieki dla pacjentów z nawracającymi napadami
Seizure Rescue Medication (RM) as Part of a Comprehensive Epilepsy Self-management Package of Care
W skrócie
Badanie uczy pacjentów z epilepsją, jak prawidłowo stosować leki ratujące życie podczas napadów drgawkowych. Program łączy edukację i wsparcie praktyczne dostosowane do potrzeb osób z częstymi napadami. Badanie ma dwie części: najpierw grupa pacjentów i ekspertów doskonali program materiałów edukacyjnych (3 miesiące), potem testuje się ten program u około 35 dorosłych pacjentów przez 6 miesięcy, aby sprawdzić czy naprawdę pomaga w bezpiecznym radzeniu sobie z epilepsją.
Oryginalny opis (angielski)
This study will be done in two phases. Using stakeholder input (community advisory board (CAB)), the study team will adapt the SMART program to incorporate education and self-management support for use of Rescue Medication (RM) to manage seizure occurrence among Persons With Epilepsy (PWE) who have repetitive seizures. Additional content/support materials, pending input stakeholder might include posters/hand-outs that present information on the use of RM in a way that is engaging and salient to PWE. It is expected that participants will be in Phase 1 for about 3 months and participate in the CAB 2 or 3 times via zoom for 60-90 minutes/meeting. The advisory board will provide input on needed refinement of an adapted version of SMART based on their individual experiences. It is anticipate the total time commitment to be no more than 6 hours over 3 months, spread out over 2-3 meetings with review of materials possible in between meetings.
Phase 2: The investigators will use a 6-month prospective trial design to test engagement with and effects of SMART-RM among approximately 35 adult (≥ 18 years) PWE who have repetitive seizures.