ALS Patients Reporting Their Health Status over the Internet Just as Reliable as a Clinician in a Hospital

At PatientsLikeMe we’ve been collecting self-reported data about patients with ALS (PALS) since 2006 – over 5,000 PALS to be exact! ALS is a disease that causes muscle wasting in the arms, legs, head and chest, which leads to problems walking, eating, and even communicating. However, unlike a disease like diabetes where there’s a blood test to tell you exactly how patients are doing, the main outcome measure used to record how PALS are doing is an instrument called the ALS Functional Rating Scale – Revised (ALSFRS-R).

A Section of the ALSFRS-R Questionnaire Pertaining to Speech Impairment

It’s a short, 12-item questionnaire that is the “gold standard” tool for clinical trials, but it has one important caveat: it’s normally only completed by clinicians (doctors, nurses, research assistants, etc.). When PALS take part in clinical research studies the questions are read out loud to them and patients are not normally allowed to see their ALSFRS-R scores. When we launched PatientsLikeMe, the concept that we would give patients their very own copy of the ALSFRS-R scale and let PALS see their scores was controversial, and although we’ve gone on to publish a number of studies using the ALSFRS-R and even expanded it for highly impaired patients, the question has always remained: is a patient’s self report of their own ALSFRS-R scores “valid”? In other words, if a patient scored her walking as “3 out of 4” on the scale, would her clinician rate it the same?

Fortunately, our research partners at the Charité Hospital in Berlin, Germany, wanted to know the answer to this too! They’ve been piloting an exciting new project to encourage patients to share progress reports on their ALS with their doctors electronically, using the Internet and other tools including the ALSFRS-R. To support this, they conducted a study where 127 ALS patients were invited to rate their severity of illness over the web, and then were invited to clinic to have their ALSFRS-R score rated in the traditional way by a trained nurse.

A Chart of the Remarkable Similarity Between ALSFRS-R Scores as Reported by ALS Patients (Bottom Axis) and Their Clinicians (Left Axis)

As the chart above shows, the results were unequivocal: “Agreement between both data-capture methods was very high…there was no systematic directional bias to any differences…more than 95% of all pairs of measurement were within the limits of agreement.” Even better, 95% of patients found there was no significant time burden, nor physical or emotional strain from completing such reports over time.

So far this all might seem rather academic, so why is this important? As the authors go on to say, “Completing patient-reported outcomes online could be a way to complement face-to-face visits and manage care in a more personalized and needs-based way, rather than relying upon regular time-intervals such as three- or six-month follow-up appointments. Online patient-reported outcomes could also be used to improve the convenience and thereby participation in clinical trials that use the ALSFRS-R as an endpoint.”

The published study is now available open-access and so is free for all to read in its entirety. We’ll also have an interview with lead study author Dr. Thomas Meyer soon, so stay tuned.

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2 thoughts on “ALS Patients Reporting Their Health Status over the Internet Just as Reliable as a Clinician in a Hospital”

  1. I saw the link for this through the Patients Like Me site, for RA. I am now being tested for ALS. Is there a link between having RA and getting ALS? I know very little about ALS and what I know scares me a lot. So far, I am having muscle and strength loss in my left hand and arm. Is there a link to people who have ALS like there is the link to people who have RA?

  2. Interesting question, Pat. We’re not medical professionals and haven’t looked into this as a research question, so the answer is ‘We don’t know’.

    But it would be a great topic for the ALS forum at Just today, another conversation was started about ALS and Alzheimer’s. You can also reach out to these two patients who report both RA and ALS on their profile to learn about their experience

    I hope you find out the cause of your muscle loss, it sounds scary to not be sure. Please let me know if there’s anything else I can do to help.

    Best wishes,
    Liz Morgan, PatientsLikeMe Community Manager

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