A new paper highlights trends from 15 years of patient-reported outcome (PRO) data.

The paper highlights trends with respect to patient inclusion, the methods for collection of PRO data, the processing of the data, and the actual applications and use of the PRO measurements.

Since 2004, the authors have collected data from several Danish patient populations for use at the group and patient levels.

During the 15-year period, 78,980 patients within 28 different groups of chronic and malignant illnesses have answered 260,433 questionnaires containing a total of 13,538,760 responses.

Researchers found several marked changes had taken place during that time.

The creation of cohorts for clinical epidemiological research purposes has shifted towards cohorts defined by clinical use of PRO data at the patient level.

The development of AmbuFlex, where PRO data is used as the entire basis for outpatient follow-up instead of fixed appointments, has undergone exponential growth and the system is currently in use in 47 International Statistical Classification of Diseases and Related Health Problems groups.

Response rates (up to 92%) and low attrition rates have been reached in group level projects, and there are even higher response rates in AmbuFlex where the patients are individually referred.

The answering method has shifted. In 2005, 66.5% of questionnaires were paper based, compared to 4.3% in 2019.

Approach methods for questionnaires and reminders have changed dramatically from letter, emails, and short message service text messaging to a national, secure electronic mail system through which 93.2% of the communication to patients took place in 2019.

Authors concluded the demand for clinical use of PRO measurements has increased, driven by a wish among patients and clinicians to use PRO to promote better symptom assessment, more patient-centred care, and more efficient use of resources.

Important technological changes have occurred, creating new opportunities, and making PRO collection and use cheaper and more feasible.

However, they warn several legal changes may constitute a barrier for further development as well as a barrier for better utilisation of patients’ questionnaire data.

The current legal restrictions on the joint use of health data imposed by the European Union’s General Data Protection Regulation makes no distinction between use and misuse. Researchers argue steps should be taken to alleviate these restrictions on the joint use of PRO data.


Hjollund NHI, Fifteen Years’ Use of Patient-Reported Outcome Measures at the Group and Patient Levels: Trend Analysis, J Med Internet Res 2019;21(9):e15856, DOI: 10.2196/15856, PMID: 31573943