A Study of Patient Satisfaction with the Huntington Disease Clinic at the University of Pittsburgh Medical Center based on a Mailed Survey

The Huntington Disease Clinic at the University of Pittsburgh Medical Center is dedicated to diagnosing, treating, and supporting patients that are at risk for Huntington disease (HD). This is a progressive disease that causes a multisystem breakdown of the body. Many of these patients grew up knowing the disease and waiting to begin exhibiting symptoms themselves. With the discovery of the gene that causes HD came a predictive gene test that can be performed on symptomatic people or people who are at risk. The test does not come without psychological impacts, though, which is why the clinic was created. The clinic includes a neurologist, a genetic counselor, and at least one social worker. It was formally created in 1999. Before 1999, an informal clinic with rotating doctors saw Huntington patients. It was the desire of the clinic to examine how the services they provide have changed since 1999 and whether they are meeting the patient's needs. This study will allow us to assess the response of the public to the clinic and make changes that will improve the service, thus lending public health relevance to the experience. A mailed satisfaction survey created from the questions of the staff was sent to all of the patients who had been through the HD clinic. Of the two hundred and two surveys sent, forty-one were returned and analyzed according to the logistics of the clinic, the medical staff, and the testing experience. It was found that active patients and patients in the support group were more likely than inactive patients and patients not attending the support group to respond to medical staffing questions. It was also found that age of the participants played a role in the satisfaction with the clinic logistics, while length between the time of testing and the time of filling out the survey played a role in the satisfaction with the physician in the clinic. A final finding of the study is that the genetic counselor and the social workers are generally well liked. Overall, the clinic is meeting the needs of the patient population they are serving