Stressfractuur.nl providing follow-up and feed-back of stress fractures
Especially in rare conditions, aggregating vital Patient Reported Outcome Measures (PROM) data is challenging for clinicians, due to their low incidence per clinic. The PROMising project pioneers in setting up a national database where patients’ participation will not be limited by the borders of their hospital. This collaboration of the AUMC with Ilumy will improve the validity of research substantially.
Stress fractures are severe injuries, though rare, which hampers the roll-out of prospective research with large numbers of patients. Treatment of these fractures has mostly been described in small retrospective case-series and therefore no accurate data on union-rate, return to sports, patient related outcomes and complication-rate is known.
With this PROMising platform, data collection is performed via safe online methods. Via stressfractuur.nl validated PROMs will be sent to patients automatically. This ensures the prospective collection of data in the course of the disease. Furthermore, patient and physician can get direct feedback on treatment and disease progression via a personalised dashboard, enabling direct clinical implementation.
After initial inclusion, the treating physicians will have no further administrative burden and the patient receives follow-up PROM-questionnaires via e-mail. Follow-up will be one year, measuring at 4 time points (baseline, 3-6-12 months). The patient can find information on stress fractures on the platform and on demand also visual feedback, progress indicators and personal dashboards. PROMs will be combined with patient satisfaction; improving the overall patient experience and compliance.
Research and development will be aimed at finding methods to minimize the mental and time burden of both patients and treating physicians. It will be explored how minimizing this burden can lower the current risk of selection and information bias in clinical cohorts, resulting in higher external validity but also in higher compliance of the patients. By minimizing work for researcher and physician to include and follow-up patients, it is expected to allow for exceptionally representative prospective clinical cohort.