Unmet Needs in Palliative Care for Advanced Parkinson Disease

Palliative care plays a critical role in improving the quality of life for patients with advanced Parkinson disease (PD) and their caregivers, yet it remains underutilized, according to a study published in Frontiers in Medicine.

Despite the known benefits of palliative care for advanced PD, a literature review has yet to focus on qualitative research concerning these patients' palliative care needs and experiences.

“Therefore, through this qualitative scoping review, our aim is to comprehensively understand and identify the palliative care needs and experiences of patients with advanced PD and their caregivers,” the study authors wrote.

The study, which analyzed 20 qualitative research papers from various countries, identified 4 main themes highlighting the challenges and requirements of this vulnerable population.

Unmet emotional and informational needs among patients with PD and their families were found. Many reported feeling isolated and overwhelmed upon diagnosis, with a lack of adequate information about disease progression and available support services. The unpredictable nature of PD often leads to heightened anxiety and uncertainty for both patients and caregivers.

Effective coordination of care emerged as a crucial requirement. Patients and caregivers expressed a strong desire for more integrated care packages and consistent support from health care professionals. Continuity of care was particularly valued, with many reporting negative experiences due to frequent changes in nursing personnel and poor communication between care institutions.

Planning for the future was identified as a major concern. Both patients and caregivers emphasized the need for better information about available resources and how to access them. Advance care planning (ACP) was found to be an emotionally charged topic, with varied opinions on when and how it should be approached.

Symptom management presented multifaceted challenges for patients with PD and their caregivers. Patients grappled with a range of physical symptoms, medication adverse effects, and psychological issues. Caregivers often felt anxious and overwhelmed, especially as the disease progressed and symptoms worsened.

“Our findings indicate that many PD patients and caregivers often face unmet emotional and informational needs, and they deeply aspire for effective care coordination,” the study authors concluded.

Reference

Lou Y, Li Y, Chen Y. The palliative care needs and experiences of patients with advanced Parkinson's disease: a qualitative scoping review. Front Med. 2024;11:1362828. doi:10.3389/fmed.2024.1362828