What’s the best way to measure Dupuytren disease impact? Finger angles? Dexterity performing hand-related activities? Subjective or self-reported surveys?
It turns out that Dupuytren is difficult to pigeonhole. People often compensate for some loss of motion without being aware that they are. Unless the fingers are really bent, angle measurements don’t correlate with what people complain about or with functional tests. Some people seem to do well with severely bent fingers; others struggle with little measurable deformity.
And, Dupuytren has many effects beyond this. Dupuytren issues can impact lives before fingers become bent and can linger after bent fingers are straightened. People report many problems other than bent fingers: pain, tenderness, clumsiness, problems writing, problems typing, problems with dexterity at work and play. These problems are all difficult to measure.
Why obsess over measurements?
Prediction: Dupuytren is hard to predict because it changes slowly and unpredictably. If we can’t predict Dupuytren, we can’t tell whether a treatment can actually prevent it.
Staging: When should Dupuytren be treated? How to decide the best treatment for an individual? The choice often is based more on tradition and gut reaction than evidence-based outcome data.
Impact: If we can’t put a number on the personal burden of Dupuytren, we can’t measure how well Dupuytren and its treatment changes lives.
One path to measurement is the International Dupuytren Data Bank. The first goal of this research is a blood test to measure Dupuytren activity. What kind of Dupuytren do you have? How active is your Dupuytren today? Do you need to do something now? Is your treatment working or do you need to try something different?
Another possible measurement is electronic. Attempts to measure Dupuytren definitively with joint angles or dexterity tests have not been successful. And because our hands are also extensions of our brains, measuring the impact of brain disorders such as Parkinson and Alzheimer on hand function is also challenging.
I recently visited Teresa Arroyo-Gallego Ph.D. at her MIT lab to see a new way to measure hand function which might apply to Dupuytren disease. Dr. Arroyo-Gallego is the Lead Data Scientist at nQ Medical Inc. She was on the original MIT Innovation Initiative research team that conceived and developed a new method to measure hand function. The idea is to measure micropatterns of finger contact while people use their computer keyboards and smart device screens. The idea is brilliant in its simplicity: Making it happen is complicated: a program that can run silently in the background, privacy protection, artificial intelligence analysis of mountains of data, establishing standards for normal and disease, and more. I saw the technology first hand and it’s impressive. This technology is currently focused only on neurodegenerative diseases but might be applied to Dupuytren in the future. It’s particularly appealing because it’s sensitive enough to show responses in real time rather than after months or years. New ideas blossom every day; we need to keep searching for opportunities for cross-pollination. This might be one.
Charles Eaton MD