Predictive Testing for Huntington’s Disease: A New Paradigm of Patient Care

Abstract

Radical changes have occurred in America’s health care system in the last twenty years. Technological and research advances have given medicine the knowledge to treat and to cure diseases once only dreamt about. But in the race to cure, the focus of health care has shifted from treating the W patient to treating the disease. Attending to the psychological and psychosocial aspects of disease has been lost, leaving patients feeling increasingly afraid, ignored, neglected, and bureaucratically managed. This honor’s thesis presents a new program of care to bridge the existing gap between the treatment of the disease and the treatment of the patient by examining the problems currently facing Huntington’s disease patients in respect to prediagnostic testing, and suggest ways to improve the protocol for testing and for patient care. The study will be presented in five parts: Part One examines the nature and scope of Huntington’s disease; specifically, the nature of the disease, advances in research in technology, the impact of the disease on patients and patients’ families, and issues surrounding pre-diagnostic testing for the disease. Part Two traces the development of protocols that are currently prescribed for the pre-diagnostic testing of Huntington’s disease by the International Huntington Disease Society (IHDS) and the Huntington’s Disease Society of America (HDSA), and examines how Shodair Children’s Hospital in Helena, Montana, has revised and adopted them for use. Part Three examines the strengths and weaknesses of Shodair’s protocol through a random survey of Helena physicians. Based on these analyses, Part Four proposes revisions to all the existing protocols that will enhance the treatment of patients. Part Five concludes the study with a discussion of the implications of the revised protocol for health care. *