Abstract
BackgroundThe impact of neurological conditions on individuals, families and society is increasing and having a significant economic impact in Canada. While some economic data is known, the human costs of living with a neurological condition are poorly understood and rarely factored into future burden analyses. The “Living with the Impact of a Neurological Condition (LINC)” study aims to fill this gap. It seeks to understand, for children and adults with neurological conditions, the supports and resources that make everyday life possible and meaningful.Methods/designThe LINC study is a nested study using mixed methods. We are interested in the following outcomes specifically: health status; resource utilization; self-management strategies; and participation. Three studies captured data from multiple sources, in multiple ways and from multiple perspectives. Study One: a population-based survey of adults (n = 1500), aged 17 and over and parents (n = 200) of children aged 5 to 16 with a neurological condition. Study Two: a prospective cohort study of 140 adults and parents carried out using monthly telephone calls for 10 months; and Study Three: a multiple perspective case study (MPCS) of 12 adults and 6 parents of children with a neurological condition. For those individuals who participate in the MPCS, we will have data from all three studies giving us rich, in depth insights into their daily lives and how they cope with barriers to living in meaningful ways.DiscussionThe LINC study will collect, for the first time in Canada, data that reflects the impact of living with a neurological condition from the perspectives of the individuals themselves. A variety of tools will be used in a combination, which is unique and innovative. This study will highlight the commonalities of burden that Canadians living with neurological conditions experience as well as their strategies for managing everyday life.
Highlights
The impact of neurological conditions on individuals, families and society is increasing and having a significant economic impact in Canada
The LINC study will collect, for the first time in Canada, data that reflects the impact of living with a neurological condition from the perspectives of the individuals themselves
In 2004-2005, 9% of acute care hospitalization and 19% of hospital stays in Canada were associated with neurological conditions as primary or secondary diagnoses [3].While economic costs are great, information regarding health care utilization and the economic burden of neurological conditions does not explicate the human costs of living with a neurological condition
Summary
The unique design of the LINC study will allow new insights and poses limitations. Participants in the MPCS will have participated in the cohort and population studies; the power is that data from all studies will be linked providing both depth and breadth of understanding across many diagnosis. This will be the first data of this kind collected in Canada. Implications The results of this study will inform service and policy development for people with neurological conditions and is expected to contribute to advances in service delivery and program development.
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