Assessing the prevalence of unmet need for genetic counseling in Canada and exploring associations with sociodemographic factors.

Understanding the prevalence and distribution of unmet need for genetic counseling (GC) can help inform health human resource planning. It is known that not all patients who could benefit from GC are currently accessing it, however, the prevalence of unmet need in Canada is unknown. Using a cross-sectional design, we surveyed 1160 Canadians to estimate the prevalence and distribution of unmet need for GC. The survey included measures of unmet need (NSGC Pathways Tool), personal utility (PrU), capability (ICECAP-A), distrust in healthcare (Revised Health Care System Distrust Scale) and demographic variables. A market research company (Leger Opinion Panel) was used for recruitment. We used descriptive statistics to estimate prevalence and multivariable regression to explore factors associated with unmet need. We found that 39% of respondents (457/1160) had unmet need for GC and 68% of this unmet need was unperceived. In the multivariable regression analysis, unmet need for GC was more likely in individuals who: had a mental health condition, were younger ( 45 yo), reported higher personal utility, and lower levels of capability (all p < 0.05 in multivariable analysis). There is a high prevalence of unmet need for GC in Canada and individuals experiencing other challenges to accessing healthcare may also be more likely to have unmet need for GC.