Early post-hospital trajectories of health-related quality of life for younger adult patients with traumatic brain injury.

Parkinson's disease (PD) is the most common movement disorder, and after five years with the disease more than 50% of patients develop motor fluctuations. These fluctuations have been shown to negatively affect PD patients’ life quality. The PD Home Diary (HD) is a widely used tool for assessing motor fluctuations and dyskinesia. The diary is filled in half-hourly by the patient and categorizes motor symptoms into four distinct states: “Off”, “On without dyskinesia”, “On with non-troublesome dyskinesia”, and “On with troublesome dyskinesia”. Since its development in 2000, the HD has been used as a central endpoint measure in many clinical trials on PD. However, the gold standard for objectively assessing motor function in PD is still considered to be the evaluation by an experienced observer. Until recently, the HD had not been validated against this standard. To address this, the collaborative VALIDATE-PD project between Sweden and Germany was initiated to validate the HD by assessing the agreement between observer and HD ratings. Studies with similar designs were conducted in both countries, and both found that the agreement between observer assessments and patient HD ratings was only fair, with poor temporal agreement. An extension of the Swedish study investigated the effect of structured patient training on the agreement between observer and HD ratings, demonstrating no significant improvement in the overall agreement, but a trend towards better detection of dyskinesias was observed. Previous studies indicate that PD patients often have low awareness of dyskinesias, likely due to metacognitive deficits in the self-monitoring system. Also, a 2024 literature review found that some data identifies salience and frontoparietal network regions as linked to motor state unawareness in PD patients. Amanzio et al. observed that awareness of hypo-bradykinesia appeared to be better preserved than dyskinesia awareness. However, the first two studies validating the HD found that only 60% of HD ratings when observed “Off” were in agreement with the simultaneous observer assessment, indicating that patients also have limited awareness of being in “Off”. Additionally, the study assessing the impact of structured training on patient-observer agreement in the HD found that while agreement for the “Off” state remained around 60% both before and after training, agreement for “On with dyskinesia” improved from 58% to 80% following the training, though this change was not statistically significant. This suggests that limited awareness of dyskinesias may partly stem from a misunderstanding of what dyskinesias are.