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Project Summary
The LHSI research centered on assessing palliative care needs in patients with Parkison disease. Parkinson's disease is a progressive neurological disorder that impacts both motor and non-motor symptoms, creating a symptom burden that affects quality of life. Since Parkinson's is a progressive disorder, advanced care planning is essential. Advance care planning is a discussion used to prepare for the future and aid physicians in aligning patient preferences and medical interventions to improve their quality of life. Indiana offers several forms to support patients' plans: Health Care Representative (HCR), Power of Attorney (POA), Living Will, and Physician Orders for Scope of Treatment (POST). There is a paucity of advanced care planning in hospital medical records available for admitting physicians to refer to when developing a plan of care. The research project aimed to determine the frequency and patient characteristics associated with patient reports of having advanced care planning and those available in the electronic medical records (EMR). The findings of this research will assist neurologists' knowledge about the patient and clinical characteristics to improve the timing and prevalence of advanced care planning in the future.
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Abstract
Purpose: This study aimed to determine who is more likely to report advance care planning (ACP) documentation and to be found in the electronic medical record (EMR).
Methods: A retrospective study was performed from November 2022 to November 2023 at IU Health Parkinson's Clinic. Patients and care partners completed questionnaires about nonmotor symptoms, emotional and spiritual struggles, reports of having advanced care planning documentation, and care partners' burdens. Researchers collected data regarding demographic information, ACP, and supportive consults from the EMR. The study's cohorts were 1) all patients who did not report having ACP, 2) those who reported having ACP, and located in EMR, and 3) those who reported having ACP not in EMR.
Results: The Mean age of the total population was 62.3 (9.6), nearly all patients were white, more than half were male (57.9%), and 44.2% had Parkinson's symptoms >10 years. Of the questionnaires collected, 115 (72.3%) reported having some form of advance care planning; 34 (29.6%) could be found in the EMR. Patients who reported having ACP had a mean age of 63.7 years compared to those who did not at 56.8 years (p=0.002). If ACPs were in EMR, they were more likely to be unmarried (p=0.02) and have a palliative care consult (p=0.01).
Conclusion: Although Parkinson's is a progressive neuro disorder, 27.7% report not having any form of ACP. This group's mean age was under 60 years, consistent with age being a predictor of ACP completion in cancer care. Those more likely to report an ACP were 60 years and older overall. This study may inform physicians on the timing of introducing ACP and who may be more likely to complete documentation.
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