The experience of living with Niemann-Pick type C: a patient and caregiver perspective

Keyphrases

• Caregivers 100%
• Living with 100%
• Patient Perspective 100%
• Caregiver Perspectives 100%
• Niemann-Pick Type C 100%
• Focus Group Discussion 60%
• Magnetic Resonance Imaging 40%
• Psychiatric Symptoms 40%
• Pediatric 20%
• Disease Pattern 20%
• Neuroimaging 20%
• Lipids 20%
• Cholesterol 20%
• Group Discussion 20%
• Memory Loss 20%
• Liver Disease 20%
• Delayed Diagnosis 20%
• Motor Function 20%
• Lysosome 20%
• Neurological Symptoms 20%
• Patient Perception 20%
• Social Exclusion 20%
• Systemic Symptoms 20%
• Experience of Care 20%
• Sedation 20%
• Caregiver Perceptions 20%
• Late Endosome 20%
• Impaired Mobility 20%
• Adult Individuals 20%
• Imaging Methodology 20%
• Loss of Independence 20%
• Medical Equipment 20%
• Design Parameters 20%
• Lysosomal Storage Disease 20%
• Mobility Function 20%
• Current Concerns 20%
• Neurological Signs 20%
• Pick's Disease 20%
• Social Uncertainty 20%
• Design Feasibility 20%
• Participation in Research 20%
• Emotional Toll 20%

Medicine and Dentistry

• Magnetic Resonance Imaging 100%
• Pediatrics 50%
• Lysosome 50%
• Neurologic Disease 50%
• Motor Performance 50%
• Lysosomal Storage Disease 50%
• Liver Disease 50%
• Lacunar Amnesia 50%
• Medical Device 50%
• Endosome 50%
• Pick's Disease 50%

INIS

• patients 100%
• diseases 37%
• nmr imaging 25%
• symptoms 25%
• losses 25%
• liver 12%
• motors 12%
• mobility 12%
• spectra 12%
• design 12%
• phenotype 12%
• pediatrics 12%
• equipment 12%
• investigations 12%
• adults 12%
• accumulation 12%
• lipids 12%
• cholesterol 12%
• storage 12%
• pressing 12%
• lysosomes 12%