The challenges of classical galactosemia: HRQoL in pediatric and adult patients.
Merel E HermansHedy A van OersGert J GeurtsenLotte HavermanCarla E M HollakM Estela Rubio-GozalboAnnet M BoschPublished in: Orphanet journal of rare diseases (2023)
CG remains to impact the HRQoL of pediatric and adult patients negatively on several domains including cognition, anxiety, motor function and fatigue. A lower social health was mainly reported by parents, and not by patients themselves. The Covid-19 pandemic might have amplified the results on anxiety although higher levels of anxiety fit pre-pandemic findings. The reported fatigue is a new finding in CG. Because the effect of lockdown fatigue could not be eliminated and fatigue is a frequent finding in patients with chronic disorders, future studies are warranted. Clinicians and researchers should be attentive to both pediatric and adult patients, and the age-dependent difficulties they might encounter.
Keyphrases
- sleep quality
- end stage renal disease
- depressive symptoms
- healthcare
- mental health
- chronic kidney disease
- sars cov
- public health
- coronavirus disease
- newly diagnosed
- ejection fraction
- peritoneal dialysis
- physical activity
- current status
- prognostic factors
- risk assessment
- health information
- climate change
- patient reported outcomes
- patient reported
- young adults