A Randomized Controlled Trial of Decision Aids for Upper-Extremity Conditions.

PURPOSE: Decision aids (DAs) are tools designed to correct misconceptions, help people weigh the pros and cons of each option, and choose an option consistent with their values. This randomized controlled trial tested the difference in decision regret between patients who reviewed a DA at the end of the visit and those who did not. Secondary study questions addressed differences in pain self-efficacy, pain intensity, satisfaction, physical function, and treatment choice. METHODS: We enrolled 147 patients who visited an orthopedic upper-extremity surgeon for a condition that could be treated surgically or nonsurgically. We randomized 76 of these patients to review a DA as part of the visit (52%). At baseline, we measured results using the Pain Self-Efficacy short form, PROMIS Physical Function computer adaptive test, pain intensity on an 11-point ordinal scale, and satisfaction with the visit on an 11-point ordinal scale, as well as whether patients understood all received information and felt adequately educated to decide (no/yes), and choice of surgery, injection, or another treatment. Four to six weeks later, the survey by phone consisted of the PROMIS Physical Function computer adaptive test, pain intensity, satisfaction with the visit, the sense of a well-informed decision, and the Decision Regret Scale. We assessed factors independently associated with each measure. RESULTS: People who reviewed a DA had significantly less decision regret 4 to 6 weeks after the visit compared with those who did not. High pain self-efficacy was associated with lower likelihood to choose surgery during the initial visit, better physical function rates, and lower reported pain. CONCLUSIONS: Decision aids reduce decision regret, which suggests that they help people organize their thoughts and make decisions more consistent with their values. CLINICAL RELEVANCE: Hand surgeons can consider the use of DAs as a method for improving the quality of shared decisions.

With expanded carrier screening, founder populations run the risk of being overlooked.

Genetically isolated populations exist worldwide. Specific genetic disorders, including rare autosomal recessive disorders may have high prevalences in these populations. We searched for Dutch genetically isolated populations and their autosomal recessive founder mutations. We investigated whether these founder mutations are covered in the (preconception) expanded carrier screening tests of five carrier screening providers. Our results show that the great majority of founder mutations are not covered in these screening panels, and these panels may thus not be appropriate for use in founder populations. It is therefore important to be aware of founder mutations in a population when offering carrier tests.