An extensive research project has mapped out quality of life issues associated with Huntington’s disease, focusing on matters most important to patients and converting the identified issues into a new “smart” tool that enables patients to easily communicate their concerns with physicians.
- “HDQLIFE: the development of two new computer adaptive tests for use in Huntington disease, Speech Difficulties, and Swallowing Difficulties”
- “HDQLIFE: development and assessment of health-related quality of life in Huntington disease (HD)”
- “The development of a new computer adaptive test to evaluate chorea in Huntington disease: HDQLIFE Chorea”
- “New measures to capture end of life concerns in Huntington disease: Meaning and Purpose and Concern with Death and Dying from HDQLIFE (a patient-reported outcomes measurement system)”
“Although we have several ways to measure changes in health, for example through blood tests or magnetic resonance imaging (MRI), these tests do not necessarily capture patient concerns,” Noelle Carlozzi, PhD, associate professor of physical medicine and rehabilitation at the University of Michigan and the lead researcher of the project, said in a news release.
“My work is focused on developing patient-centered outcome measures that can capture the effect a disease has on an individual’s physical, mental and/or social health,” she said.
Patient-reported outcomes do not only allow physicians to understand and evaluate a patient’s most important health concerns, but such measurements are also crucial to understand whether a treatment is working.
Many tools for measuring patient-reported outcomes exist, but so far they have focused on the general population, or on patients with other diseases. These tests may miss specific symptoms or challenges that are specific to people with Huntington’s.
Carlozzi and her research team developed a new tool called the Huntington’s disease quality of life (HDQLIFE) measurement system, and all four publications feature various aspects of the system.
The system was developed as a set of computer-adaptive tests designed to relay information directly from patients to their clinicians.
To build the system, the research team hosted separate focus groups with patients, their family members, and healthcare providers. Patients discussed questions of how the disease impacts their quality of life, along with their social, emotional, and physical well-being. This allowed researchers to identify the aspects most important to patients.
To start, researchers analyzed previously developed quality-of-life measurement scales that are not specific to Huntington’s disease, identifying aspects that were relevant to people with Huntington’s.
Using established procedures, the team then developed new outcome measures for five issues: concerns with death and dying; meaning and purpose; difficulties with speech; difficulties with swallowing; and chorea, a neurological condition characterized by involuntary movements.
The scientists then combined the new measures with the aspects of the older scales that researchers deemed were relevant to Huntington’s disease, creating the new HDQLIFE system.
“When you’re working with a rare disease such as Huntington’s disease, it is important that our measures are sensitive enough to detect subtle changes in functioning,” said Carlozzi, also the director of the center for Clinical Outcomes Development and Application at the University of Michigan.
“Better measures mean we need fewer people in our clinical studies to know whether or not our treatments are working,” she said.
An important aspect of the new system is that it was developed as a “smart-test.” When the test administers the initial questions, it uses the answers to calibrate the rest of the test, choosing questions based on the previous answers. This way, tests become tailored to the individual, who only sees questions relevant to him or her.
Typically, patients only need to answer four to eight questions per test domain, with each measure taking only a minute or two to complete.
“We don’t want to be asking an individual, especially one with cognitive problems, to take a long test. These findings will decrease the burden on patients and maximize efficiency for clinicians,” Carlozzi said.
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