Published: 23-11-2016

The PRO instrument ontology within heoro.com has been developed from the literature, with new tools added to the ontology when they are cited by papers. An analysis of the initial database content of over 100,000 abstracts that were indexed in PubMed since 2005 identified a surprisingly large number of different instruments - 4,272 in total.

We undertook an anlysis of these instruments to determine which diseases, symptoms or problems and populations they related to, and published some of our findings as posters at the recent ISPOR congress in Vienna. In this blog, we present an overview of what we discovered, but if you prefer you can download the poster here.

Of the 4,272 instruments we identified, most (2,648) were disease-specific. We categorised the others as being relevant to non-disease-specific treatments (309 instruments), or to non-disease-specific symptoms (246 instruments). Others were for use in specific populations such as children (243 instruments), for caregivers or family members (117 instruments), for the elderly (70 instruments) and 13 were designed solely for use by clinicians or researchers. Utility values were assessed by 38 instruments.

Of the disease-specific instruments, mental disorders had the largest number of different tools (434), followed by musculoskeletal diseases (344 tools), neurological disorders(292), cancers (243), gastrointestinal diseases (231), respiratory diseases (204) and urogenital disorders (172).

Treatment-related instruments generally assessed adverse events (100) or satisfaction or effectiveness (92 tools each).

Symptom-related instruments most commonly assessed pain (122 tools), urinary incontinence (62), sleep disorders (61) or fatigue (49).

In many ways these findings are what we would have expected. More PRO instruments have been developed for diseases and symptoms that are best assessed by patient-reported outcomes rather than more objective laboratory or clinically documented measures. What is surprising though is the vast numbers of instruments that have been developed, especially as our list does not separately index versions that have been adapted for different populations or languages. This could be because many of the tools are not freely accessible, or fail to measure impacts of specific treatments in a particular disease.

What is clear, however, is that it is very difficult and time-consuming to keep on top of the different PRO tools that have been used for a disease, problem or population, and to identify researchers who might be able to help others access the tool. Helping those working within the pharmaceutical sector to quickly assimilate such information is one of the reasons we developed heoro.com. We hope you find it useful!