Psychosocial impact of predictive testing for Huntington disease on support persons

Although a support person is required by many centers during the predictive testing protocol for Huntington disease (HD), little is known about the ps ychosocial impact of predictive testing on persons serving in this role. Ei ghteen adults who were support persons during predictive HD testing in one HD testing center completed a semi-structured interview to describe their e xperiences. Participants also completed the Impact of Events Scale (IES) to assess perceptions of emotional distress regarding predictive testing and the State Anxiety Scale of the State Trait Anxiety Inventory (STAI) to asse ss anxiety regarding the interview. State anxiety scores were similar to no rmative values for working adults. Although support persons for individuals with a positive gene test scored higher on all measures of the PES than th ose who were support persons for persons with negative gene mutation result s, these differences were not statistically significant. Support persons id entified aspects of the protocol that did not fit their needs, perceived th e testing process as extending into subsequent caregiving responsibilities when the test was positive, and were uninformed regarding specific caregivi ng issues for family members with the gene mutation. The impact of the test ing experience appeared to be most intense for those support persons who we re at-risk offspring of probands. Findings suggest that individual assessme nt of support person needs may allow more focused counseling of support per sons during predictive genetic HD testing. Collaboration with health care p roviders may facilitate symptom management following testing, Am. J. Med. G enet. (Neuropsychiatr. Genet.) 96:353-359, 2000. (C) 2000 Wiley-Liss, Inc.