The impact of genetic counseling on patient engagement in a specialty cancer clinic.

Zakas AL1,2, Leifeste C1,3, Dudley B4, Karloski E4, Afonso S1, Grubs RE1, Shaffer JR1,5, Durst AL1, Parkinson MD6, Brand R4.

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Abstract

The identification of patient outcomes unique to the field of genetic counseling has become a recent priority of the profession. Current health-care efforts have targeted patient engagement as an outcome capable of improving population health and reducing health-care costs. This study analyzed patient engagement levels among 182 participants who underwent genetic counseling for gastrointestinal (GI) cancer risk assessment in an outpatient specialty clinic. Patients seen at the UPMC Hereditary GI Tumor Program completed a validated patient engagement measure, the Altarum Consumer Engagement (ACE), prior to undergoing genetic counseling and again three months after enrollment. Paired t test analysis was conducted to assess the changes in Total ACE scores, and within the following three domains: Navigation, Informed Choice, and Commitment. In the sample of 182 participants, Total ACE scores increased after genetic counseling (by 5.7%; p < .0001), as did all three domains (Commitment p = .0008; Navigation p = .0008; and Informed Choice p = .0016). This study is the first known report of patient engagement levels in individuals undergoing genetic counseling in a specialty cancer clinic and suggests that genetic counseling improves patient engagement levels.

KEYWORDS:

ACE measure; altarum consumer engagement; complex disease; genetic counseling; genetic counselors; genetics services; intervention; outcome; patient engagement; public health