Newborn screening for cystic fibrosis: Role of primary care providers in caring for infants with positive screening results.

Objective: To explore primary care providers' (PCPs') preferred roles and confidence in caring for infants receiving a positive cystic fibrosis (CF) newborn screening (NBS) result, as well as management of CF family planning issues, given that expanded NBS has resulted in an increase in positive results.

Design: Mailed questionnaire.

Setting: Ontario.

Primary care providers' role in newborn screening result notification for cystic fibrosis.

Objective: To explore primary care providers' (PCPs') role in result notification for newborn screening (NBS) for cystic fibrosis (CF), given that expanded NBS has increased the number of positive screening test results, drawing attention to the role of PCPs in supporting families.

Design: Cross-sectional survey and qualitative interviews.

Setting: Ontario.

How Procurement Judges The Value of Medical Technologies: A Review of Healthcare Tenders.

Objectives: Procurement's important role in healthcare decision making has encouraged criticism and calls for greater collaboration with health technology assessment (HTA), and necessitates detailed analysis of how procurement approaches the decision task.

Methods: We reviewed tender documents that solicit medical technologies for patient care in Canada, focusing on request for proposal (RFP) tenders that assess quality and cost, supplemented by a census of all tender types. We extracted data to assess (i) use of group purchasing organizations (GPOs) as buyers, (ii) evaluation criteria and rubrics, and (iii) contract terms, as indicators of supplier type and market conditions.

What's Involved with Wanting to Be Involved? Comparing Expectations for Public Engagement in Health Policy across Research and Care Contexts.

Objectives: We explored public preferences for involvement in health policy decisions, across the contexts of medical research and healthcare.

Approach: We e-surveyed a sample of Canadians, categorizing respondents by preferences for decision control: (1) more authority; (2) more input; (3) status quo. Two generalized ordered logistic regressions assessed influences on preferences.

Psychosocial Response to Uncertain Newborn Screening Results for Cystic Fibrosis.

Objective: To explore the psychosocial implications of diagnostic uncertainty that result from inconclusive results generated by newborn bloodspot screening (NBS) for cystic fibrosis (CF).

Study Design: Using a mixed methods prospective cohort study of children who received NBS for CF, we compared psychosocial outcomes of parents whose children who received persistently inconclusive results with those whose children received true positive or screen-negative results.

Results: Mothers of infants who received inconclusive results (n = 17), diagnoses of CF (n = 15), and screen-negative results (n = 411) were surveyed; 23 parent interviews were completed.

A secondary benefit: the reproductive impact of carrier results from newborn screening for cystic fibrosis.

Purpose: Newborn screening (NBS) for cystic fibrosis (CF) can identify carriers, which is considered a benefit that enables reproductive planning. We examined the reproductive impact of carrier result disclosure of NBS for CF.

Methods: We surveyed mothers of carrier infants after NBS (Time 1) and 1 year later (Time 2) to ascertain intended and reported communication of their infants' carrier results to relatives, carrier testing for themselves/other children, and reproductive decisions.

Parent Experience With False-Positive Newborn Screening Results for Cystic Fibrosis.

Background: The risk of psychosocial harm in families of infants with false-positive (FP) newborn bloodspot screening (NBS) results for cystic fibrosis (CF) is a longstanding concern. Whether well designed retrieval and confirmatory testing systems can mitigate risks remains unknown.

Methods: Using a mixed-methods cohort design, we obtained prospective self-report data from mothers of infants with FP CF NBS results 2 to 3 months after confirmatory testing at Ontario's largest follow-up center, and from a randomly selected control sample of mothers of screen negative infants from the same region.

Using Newborn Screening Bloodspots for Research: Public Preferences for Policy Options.

Objectives: Retaining residual newborn screening (NBS) bloodspots for medical research remains contentious. To inform this debate, we sought to understand public preferences for, and reasons for preferring, alternative policy options.

Methods: We assessed preferences among 4 policy options for research use of residual bloodspots through a bilingual national Internet survey of a representative sample of Canadians.

Public Perceptions of the Benefits and Risks of Newborn Screening.

Background: Growing technological capacity and parent and professional advocacy highlight the need to understand public expectations of newborn population screening.

Methods: We administered a bilingual (French, English) Internet survey to a demographically proportional sample of Canadians in 2013 to assess preferences for the types of diseases to be screened for in newborns by using a discrete choice experiment. Attributes were: clinical benefits of improved health, earlier time to diagnosis, reproductive risk information, false-positive (FP) results, and overdiagnosed infants.

Public views on participating in newborn screening using genome sequencing.

Growing discussion on the use of whole-genome or exome sequencing (WG/ES) in newborn screening (NBS) has raised concerns regarding the generation of incidental information on millions of infants annually. It is unknown whether integrating WG/ES would alter public expectations regarding participation in universal NBS. We assessed public willingness to participate in NBS using WG/ES compared with current NBS.

An investigation of the theoretical content of physical activity brochures.

New evidence-based physical activity guidelines and recommendations for constructing messages supplementing the guidelines have been put forth. As well, recent reviewshave identified theoretical constructs that hold promise as targets for intervention: self-regulation, outcome expectancies and self-efficacy. The purpose of this study was to examine the integration of messages targeting self-regulation, self-efficacy and outcome expectancies in existing physical activity brochures.

Examining predictors of physical activity among inactive middle-aged women: an application of the health action process approach.

This study tested several relationships predicted by the Health Action Process Approach (HAPA) in a sample of 175 generally healthy, inactive, middle-aged women (40-65 yrs old) over a 12 week period. Participants' physical activity, risk perceptions, outcome expectancies, action self-efficacy and intention were measured at baseline. Planning and maintenance self-efficacy were measured 4 weeks later.

Exercise as stigma management for individuals with onset-controllable and onset-uncontrollable spinal cord injury.

Unlabelled: Studies have suggested that individuals with physical disabilities are often stigmatized and are perceived to possess less favorable physical and psychological characteristics than individuals without disability.

Purpose: To investigate whether able-bodied adults' perceptions of people with different causes of spinal cord injury (SCI) are influenced by physical activity status information.

Method And Participants: Each participant (N = 198) read all five vignettes describing individuals with SCI who had varying levels of physical activity participation and cause of injury information (e.