Evaluating Empowerment in Genetic Counseling Using Patient Reported Outcomes.

Yuen J1, Lee SY1, Courtney E1, Lim J2, Soh H1, Li ST1, Chen Y1, McAllister M3, Fenwick EK4,5, Ngeow J1,6,7.

Author information

1: Cancer Genetics Service, Division of Medical Oncology, National Cancer Centre Singapore, Singapore.
2: Biostatistics Unit, Department of Clinical Trials and Epidemiological Sciences, National Cancer Centre Singapore, Singapore.
3: Centre for Medical Education, School of Medicine, Cardiff University, Cardiff, UK.
4: Health Services and Systems Research, Duke-NUS Medical School, Singapore.
5: Health Services Research Group, Singapore Eye Research Institute, Singapore.
6: Oncology Academic Clinical Program, Duke-NUS Medical School, Singapore.
7: Lee Kong Chian School of Medicine, Nanyang Technological University, Singapore.

Abstract

Data about patient-reported outcomes from cancer genetics services (CGS) are lacking but are essential to guide service evaluation and improvements. We measured improvement in empowerment, following genetic counseling in Singapore using a culturally-adapted version of the Genetic Counseling Outcome Scale (GCOS-24); and sought to identify factors associated with change in empowerment. The GCOS-24 was administered to 155 patients of the CGS, at pre- and post-counseling or testing timepoints. Of which, 110 patients underwent genetic testing. Individual pre- and post-counseling responses were subjected to Rasch analysis; the scale was subsequently split into Cognitive Control (CC) and Emotional Control (EC) domains. Associations of baseline characteristics with changes in pre- and post-CC and EC scores were assessed using multiple regression analysis. Both CC and EC scores showed significant improvement following genetic counseling and testing. While all items in the CC domain of being showed increases at follow-up, aspects of EC related to alleviating negative emotions (p = 0.88) and hopelessness (p = 0.2) did not demonstrate significant improvement. Our study revealed significant improvement in patient empowerment in patients who have received cancer genetic counselling, while revealing a need to cultivate hope and facilitate the alleviation of negative emotions in patients during genetic counselling. This article is protected by copyright. All rights reserved.