How Enroll-HD plans to improve quality of life

Making day-to-day health care better for people with HD is one of the central goals of Enroll-HD. By comparing the hundreds of clinical centers around the world that will be involved in the study, it should be possible to single out the ones that consistently have healthier patients and identify what they are doing right.

These “best practices” can then be applied everywhere, improving health care for everyone involved in the study. “We have the opportunity to understand what aspects of treatment work best, and ultimately to encourage practitioners around the world to use these strategies,” says Martha Nance, MD, medical director of the HDSA Center of Excellence at Hennepin County Medical Center, who is the co-chair of Enroll-HD’s Clinical Care Improvement Committee.

To begin the process CHDI held a meeting at its New York office in April 2013 to learn from care quality improvement projects in areas like Parkinson’s disease and the inherited lung disease cystic fibrosis (CF). Two common ingredients for success: making data freely available, and getting patients actively involved.

The Cystic Fibrosis Foundation, for example, noticed that patients at some CF centers were healthier and lived longer, so they began collecting key measures of patient health such as lung function and nutritional status at every CF center. These numbers are made public, so that each center’s performance can be compared against national benchmarks—strong motivation to provide better care. A quality improvement “toolkit” also teaches CF patients and families how to advocate and collaborate for better local care. (Read more about the success of the Cystic Fibrosis Foundation quality improvement project in this story from Enroll!)

Barbara Vickrey, MD, MPH of the University of California Los Angeles found that simply making sure that clinics follow treatment guidelines can make a big difference. She studied dementia clinics that began following guidelines emphasizing coordinated care and connections with community agencies. For example, dementia clinic staff began talking directly to community agencies that offer services like financial planning advice and home-delivered meals, rather than expecting caregivers to make the appointments. Within a year, these changes improved patient quality of life and the overall quality of care, in comparison to clinics that did not adopt guidelines.

Quality improvement in HD

In HD the first step will be to define what success should look like and what should be the best way to measure the quality of life. One project in the US and one in the UK are now testing how to measure health-related quality of life for people on the HD spectrum, potentially including such factors as mood, satisfaction with social activities, cognition, mobility, difficulties with speech and swallowing.

The committee hopes to partner with patient organizations and experts in quality of care improvement. Potential partners should contact Nance. Eventually a system might be set up so that each Enroll-HD site gets a regular report comparing its performance to a global average. The ultimate goal is to help all people with HD live as well as possible, says Nance. “What matters most is the health of the patient.”

This story was originally published in the May 2013 issue of Enroll!