Introduction

Innovations in Data, Evidence and Applications for Persons with Neurological Conditions (ideas PNC)

The ideas PNC project is the first major study to link interRAI researchers with leading Canadian and international experts in neurological conditions in an effort to understand the strengths, preferences and needs of persons with neurological conditions across the continuum of care.

The study will identify person - and system - level factors that influence the trajectory of change, quality of life, and patterns of health service utilization among persons with neurological conditions. It will improve the quality of health and related services by expanding the evidence base to inform decision-making, and will enable the development of decision support systems that may be used at all levels of health care delivery from the bedside to policy levels. It will also inform strategies to improve the capacity of informal caregivers to participate in the support and care of persons with neurological conditions in all care settings.

The specific conditions explored in the research are Alzheimer's disease and related dementias (ADRD); multiple sclerosis (MS); amyotrophic lateral sclerosis (ALS); Parkinson's disease (PD); Huntington's disease (HD); epilepsy; muscular dystrophy (MD); cerebral palsy (CP); and neurotrauma (both traumatic brain injury and spinal cord injury).

The primary objectives are:

  • Estimate prevalence of the neurological conditions across the continuum of care
  • Develop detailed clinical profile of persons with 10 neurological conditions in different care settings
  • Evaluate applicability of current interRAI care planning approaches to persons with neurological conditions
  • Examine access to and utilization of health and social services by persons with neurological conditions
  • Examine costs of care associated with neurological conditions including both formal and informal sources
  • Identify approaches for performance measurement and develop recommendations on reporting and risk adjustment methods
  • Examine experience of informal caregivers providing support, including extent and type of care provided