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Purpose: Clinical utility describes a genetic test's value to patients, families, health-care providers, systems, or society. This study aims to define clinical utility from the perspective of clinicians and develop a novel outcome measure that operationalizes this concept., Methods: Item selection for the Clinician-reported Genetic testing Utility InDEx (C-GUIDE) was informed by a scoping review of the literature. Item reduction was guided by qualitative and quantitative feedback from semistructured interviews and a cross-sectional survey of genetics and nongenetics specialists. Final item selection, index scoring, and structure were guided by feedback from an expert panel of genetics professionals., Results: A review of 194 publications informed the selection of a preliminary set of 25 items. Feedback from 35 semistructured interviews, 113 surveys, and 11 expert panelists informed the content and wording of C-GUIDE's final set of 18 items that reflect on the utility of testing related to diagnosis, management, and familial/psychosocial impact. C-GUIDE achieves content and face validity for use in a range of diagnostic genetic testing settings., Conclusion: Work to establish reliability and construct validity is underway. C-GUIDE will be useful in comparative studies to generate policy-relevant evidence pertaining to the clinical utility of genetic testing across a range of settings.

Objective: The aim of this study was to identify risk factors for long-term adverse outcomes in children with asthma after visiting the emergency department (ED)., Methods: A prospective observational study was conducted at the ED of a pediatric tertiary hospital in Ontario, Canada. Patient outcomes (ie, acute asthma episodes and ED visits) were measured at baseline and at 1- and 6-months post-ED discharge. Time trends in outcomes were assessed using the generalized estimating equations method. Multiple conditional logistic regressions were used to model outcomes at 6 months and examine the impact of drug insurance coverage while adjusting for confounders., Results: Of the 269 children recruited, 81.8% completed both follow-ups. ED use significantly reduced from 39.4% at baseline to 26.8% at 6 months (P < .001), whereas the level of acute asthma episodes remained unchanged. Children with drug insurance coverage were less likely to have acute asthma episodes (adjusted odds ratio [AOR] = 0.36; 95% CI, 0.15-0.85; P < .02) or repeat ED visits (AOR = 0.45; 95% CI, 0.20-0.99; P < .05) at 6 months. Other risk factors for adverse outcomes included previous adverse asthma events and certain asthma triggers (eg, cold/sinus infection). Washing bed linens in hot water weekly was protective against subsequent acute asthma episodes., Conclusions: Our study demonstrated significant improvements in long-term outcomes in children seeking acute care for asthma in the ED. Future efforts remain in targeting the sustainability of improved outcomes beyond 6 months. Risk factors identified can help target vulnerable populations for proper interventions, which may include efforts to maximize insurance coverage for asthma medications and strategies to improve asthma self-management through patient and provider education.

Health services utilization information is important for outcomes research. This study assessed the reliability of self-reports of health services utilization in respiratory patients. Patients reported health services use and other information during three telephone interviews over 6 months. Reports of visits to general practitioners (GPs), specialists, emergency room (ER)/clinics, and hospital admissions were compared with corresponding fee service claims in the Ontario Health Insurance Plan administrative database in 83 subjects. Agreement between the two sources was calculated using observed agreement and estimated kappa. Substantial agreement was found for hospital admissions and visits to respiratory specialists. Agreement was moderate for GP visits and slight for ER/clinic visits. Patient self-report of ER use appeared unreliable and may be related to imprecise questionnaire wording and inadequately defined fee service codes. The findings emphasize the importance of the methods used to assess the reliability of patient self-reports used in outcomes research.