Key Research Directions in Neuropalliative Care Identified by Experts

Neurological conditions such as Alzheimer's, stroke, and epilepsy significantly impact individuals' abilities to communicate, move, think, and live independently. The repercussions extend beyond patients to their families and caregivers. In response to this pressing need, the emerging field of neuropalliative care aims to provide comprehensive support for those grappling with severe neurological disorders.

A recent communication published in JAMA Neurology highlights critical research areas that can enhance the quality of care for these patients. The article emphasizes the necessity for better identification and measurement of symptoms and outcomes, improved methods for care delivery, and enhanced communication about prognosis.

Experts note that neurological diseases are among the leading causes of death and disability worldwide. Research indicates that the palliative care needs and quality of life concerns for patients with neurological conditions are similar to those in other serious illnesses, like cancer, where palliative care is more traditionally integrated.

Despite the increasing demand for effective care, current research exploring palliative approaches for neurological diseases remains limited. To address this knowledge gap, experts convened under the International Neuropalliative Care Society (INPCS) Research Committee, comprising clinicians, researchers, therapists, social workers, patients, and caregivers, to identify research priorities.

The focus of future research should center on understanding the symptoms that matter most to patients and their families. Moreover, when delivering care, it is essential to consider the specific environments of patients and the constraints that must be navigated.

Communication barriers often arise as neurological diseases can hinder patients' ability to convey their health needs effectively. In more severe cases, patients may rely on family members or proxies to articulate their wishes to healthcare providers. The experts advocate for the integration of technological solutions, such as eye-tracking devices and sleep monitoring tools, to empower patients and foster greater autonomy in their care.

Moreover, it is crucial to develop strategies for providing goal-concordant care, which aligns with patients' values, especially when they cannot communicate those goals themselves. Neuropalliative care can take place in various settings, including hospitals, nursing homes, outpatient clinics, and even patients' homes. Practitioners are encouraged to adapt their care interventions based on the specific resources available within these different environments.

Quality of life (QOL) extends beyond physical health and social interactions to include aspects such as identity, spiritual well-being, financial stress, and the stigma associated with illness. Future studies should encompass these broader dimensions of quality of life in addition to more conventional metrics, such as pain and anxiety levels.

In addition to outlining these research needs, experts urge funding organizations to prioritize supportive care initiatives alongside curative efforts. While finding cures is vital, many individuals with neurological disorders can benefit from palliative care throughout their lives, even when they are undergoing treatments aimed at curing their conditions.

Highlighting the need for increased funding and attention to this area of research, experts emphasize the importance of establishing the necessary infrastructure to support advancements in neuropalliative care.