Commentary: Measuring what matters: the case for patient generated PROMS

When I started researching amyotrophic lateral sclerosis (ALS) in 2002 I was trained to interview patients and administer a 12 item scale assessing their ability to walk, speak, and breathe. It yielded a score between 48 (healthy) and 0 (incapacitated). This functional rating scale (ALSFRS-R)1 was developed to support clinical trials and correlates with survival and markers of neurodegeneration.2 3 In contrast to the shared notes schemes Nelson and colleagues’ describe,4 we were not allowed to tell patients what their score was. The scale was seen as a research tool to describe groups, not the progress of individuals, so would it help or harm patients to know they scored 23 or 35?

Subsequent validation studies showed the measure was just as reliable if administered by caregivers,5 by telephone,6 or by patients themselves.7 In November 2005 patients were given access to an online self reported version of the scale and visualisations of their progress compared with that of other patients on PatientsLikeMe.com. This website was built by a family affected by ALS who wanted to learn more about the progression of the disease and manage it effectively. Self reported data submitted to the website were validated against clinical measures …