Neuropalliative care for progressive neurological diseases: A scoping review on models of care and priorities for future research.

BACKGROUND: Neuropalliative care is a newly-defined subspeciality bringing specific aspects of fields of neurology and palliative care together to better meet the complex care needs of people with progressive neurological diseases. Examining these needs would help provide guidance about developing relevant models of care and identify gaps in research knowledge. AIM: To identify current models and approaches to neuropalliative care for people with progressive neurological diseases and the priorities for future research work. DESIGN: A scoping literature review following the methods described by the Joanna Briggs Institute. DATA SOURCES: An electronic search of the literature was undertaken from six sources including MEDLINE (Ovid), EMCARE, PsycINFO and CINAHL covering the years January 2011 to September 2021. RESULTS: Twenty-eight studies were found examining neuropalliative care from the perspectives of 4795 PND patients, 774 informal carers and 138 health professionals. All studies held themes of integrative care, with most studies employing outpatient models of multidisciplinary care. Topics discussed included: overcoming local system-issues, providing education for professionals, patients and carers, early referral and capturing outcome measures for quality-assurance and future research work. CONCLUSIONS: Most models of neuropalliative care described in the international literature are predominantly outpatient, multidisciplinary and integrative. Clinicians typically utilise existing neurology and palliative care infrastructure to provide care. More high-quality research and outcome tools are needed to guide the design of evidence-based palliative care for people with progressive neurological diseases.

Enhancing the Clinical Utility of DriveSafe DriveAware for People with Huntington's Disease.

DriveSafe DriveAware (DSDA) is a cognitive screening tool assessing driving safety. Previously, we found DSDA categorised some HD participants as 'likely to pass' on-road assessments, despite displaying cognitive impairments in domains known to impact driving. As processing speed is affected early in HD, we examined whether DSDA completion time could provide supplementary cognitive information to support clinical decision-making. The HD group completed subtests significantly slower than controls, and completion times correlated with cognitive functions essential for driving. Considering DSDA completion time may tailor the assessment for people with HD so that it is more reflective of HD-related cognitive functioning.