Umer Akbar, MD
Awards
Advance RI-CTR Mentored Research Award (2023)
"Improving Prognostication In End-Stage Parkinson Disease"*
Parkinson’s disease (PD) is the most common neurodegenerative disorder after Alzheimer’s disease. Nonmotor symptoms, such as fatigue, depression and dementia, greatly affect quality of life, and in combination with motor symptoms, lead eventually to physical and cognitive disability and dependency. At these advanced stages of the disease, older adults with PD can benefit greatly from hospice, which has been shown to improve quality of life, decrease hospitalization and medical cost, and improve caregiver burden. However, hospice is generally under-utilized by people with PD (PwPD) at end of life, and reports of hospice use vary greatly, from 0% to 69%.
One of the prime factors for inadequate end-of-life care identified by practitioners at the national Parkinson Foundation’s Centers of Excellence was the lack of appropriate guidelines or tools for clinicians. Review of studies examining factors associated with mortality among PwPD have found a critical lack of predictive models or appropriate revisions and updates to Medicare Hospice guidelines relevant to PD. To improve end-of-life care of PwPD and minimize societal burden of disease, developing and validating a practical mortality risk tool for routine clinical use is critical.
This study proposes to use Medicare claims data and nursing home assessments (MDS) to identify factors and the extent of their contribution to 6-month mortality to create a predictive mortality risk score in PD. Additionally, the accuracy of this PD-specific tool will be compared with current Medicare hospice guidelines to predict 6-month mortality.
The study seeks to accomplish the following aims:
- Aim 1: To derive a predictive mortality risk score in nationwide samples of nursing home and community-dwelling patients with advanced PD using the Minimum Data Set (MDS) and Medicare claims data.
- Aim 2: To compare the accuracy of our PD-specific mortality risk score to currently available Medicare Hospice Guidelines.
The results of this proposal will create the first evidence-based and PD-specific risk scores for hospice referral and will provide the first systematic analysis of the accuracy and use of currently available hospice guidelines in this population. This work will have a direct impact on patient care in Rhode Island and will also create a foundation for future studies to improve hospice referrals and estimation of prognosis.