Development of Psycho-social Support Program for Patients and Caregivers of Myotonic Dystrophy Type 1
- Conditions
- Myotonic dystrophy type 1
- Registration Number
- JPRN-UMIN000049167
- Lead Sponsor
- ational Center of Neurology and Psychiatry
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Complete: follow-up continuing
- Sex
- All
- Target Recruitment
- 16
Not provided
1) If either the patient or caregiver is unwilling to participate in the study. 2) If patient has intake of antipsychotics and/or mood stabilizers. 3) If there was a change in dosage of antidepressants, anti-anxiety drugs, sleeping pills, Modafinil, and Ritalin in the past 12 months. However, intake of as-needed anxiolytics and sleeping pills are allowed. 4) If the caregiver is in caregiving profession. 5) Other cases in which the principal investigator or research co-investigator determines that the participant is not suitable for study participation.
Study & Design
- Study Type
- Interventional
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method Activity and Participation: Frenchay Activities Index
- Secondary Outcome Measures
Name Time Method Fatigue: Fatigue Severity Scale Daytime Sleepiness: Epworth Sleepiness Scale QOL: SF-12v2 Apathy: Apathy Evaluation Scale Caregiver version Cognitive ability: Mini Mental State Examination Caregiving burden: Zarit Caregiver Burden Short version