The aim of this study is to describe how generic preference?based health?related quality of life (HRQoL) instruments have been used in research involving children with neurodevelopmental disorders (NDD).

Purpose: Growing up with a sibling with a neurodevelopmental disorder can have positive and negative effects on personal, social and emotional well-being; however, little is known about the impacts on unaffected siblings’ quality of life. The purpose of this review was to synthesize evidence from studies evaluating the quality of life of unaffected siblings of children with…

Early detection of neurodevelopmental disorders (NDDs) enables access to early interventions for children. We assess the Ages and Stages Questionnaire (ASQ)’s ability to identify children with a NDD in population data.

Economic evaluation is a tool used to inform decision makers on the efficiency of comparative healthcare interventions and inform resource allocation decisions. There is a growing need for the use of economic evaluations to assess the value of interventions for children with neurodevelopmental disorders (NDDs), a population that has increasing demands for healthcare services. Unfortunately,…

An increasing number of family service agencies and community-based mental health service providers are implementing a single-session walk-in counselling (SSWIC) as an alternative to traditional counselling. However, few economic evaluations have been undertaken.

In the nurse-led care (NLC) model, nurses take on the primary responsibility for patient management. We systematically assessed the effect of NLC for patients with rheumatoid arthritis (RA) on multiple dimensions of quality of care from the Alberta Quality of Care Matrix for Health.

A patient research internship (Patient and Community Engagement Research program-PaCER) was created to support a provincial commitment by Alberta Health Services' Strategic Clinical Networks™ to find new ways to engage patients in a new interdisciplinary organization to support evidence-informed improvements in clinical outcomes across the health system.

Middle-aged individuals classified as normal by BMI may be overweight/obese based on measures of %BF. These individuals may be at risk for chronic diseases, but would not be identified as such based on their BMI classification. Quantifying %BF in this group could inform targeted strategies for disease prevention.

Since whole-genome sequencing (WGS) information can have positive and negative personal utility for individuals, we examined predictors of willingness to pay (WTP) for WGS. Patients & methods: We surveyed two independent populations: adult patients (n = 203) and college seniors (n = 980). Ordinal logistic regression models were used to characterize the relationship between…

The growth of "big data" and the emphasis on patient-centered health care have led to the increasing use of two key technologies: personalized medicine and digital medicine. For these technologies to move into mainstream health care and be reimbursed by insurers, it will be essential to have evidence that their benefits provide reasonable value relative to their costs. These technologies,…

We examine key study design challenges of using stated-preference methods to estimate the value of whole-genome sequencing (WGS) as a specific example of genomic testing. Assessing the value of WGS is complex because WGS provides multiple findings, some of which can be incidental in nature and unrelated to the specific health concerns that motivated the test. In addition, WGS results…