What are Patient-Reported Outcome Measures (PROMS)?

PROMs – patient-reported health outcome measures – are validated tools developed to measure and assess dideases such as systemic mastocytosis.

These questionnaires – usually used as paper version – are used in centers and in research to assess disease activity and progression. For mastocytosis there are three main PROMs: Mastocytosis Activity Score (MAS), Mastocytosis Control Test (MCT) and the Mastocytosis Quality of Life Questionnaire (MC-QoL).
The Mastocytosis Activity Score – MAS – is used to determine disease activity. Continuous recording for at least 7 days is required to calculate the “MAS7” value.  
The Mastocytosis Control Test – MCT – is used to monitor the disease. The calculated value helps to assess the extent to which the disease is under control with the current therapy and whether adjustments to lifestyle or treatment are necessary.
The Mastocytosis Quality of Life Questionnaire – MC-QoL – was developed to assess the impact of the disease on quality of life. 
The questionnaires integrated into the app were developed at the Charité Berlin by a team led by PD Dr. Frank Siebenhaar, PD Dr. Karsten Weller and Prof. Dr. Marcus Maurer and are provided by Moxie GmbH. 

In the MASTHAVE App all three PROMs are integrated to make it easy for patients to complete these questionnaires in their everyday life conveniently on their mobile device. The MAS is delivered every day for a continuous monitoring and self assessment. The MCT and MC-QoL are queried every 4 weeks to give patients a regular overview of how well their mastocytosis is controlled and how this impacts their quality of life.