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Project measuring participation

Improving the measurement of societal participation by extending the PROMIS item bank

Patients, healthcare providers, and the society at large value societal activity and participation as an important health outcome while at the same time, it is considered a determinant of health. For all of us it contributes, for example, to general health and mental health, and recovery after disease. However, societal activity and participation is difficult to measure as it involves a diversity of domains, which may not be applicable to everyone. To illustrate, for some it encompasses participation in paid work combined with providing informal care, while for others it encompasses taking care of their family in combination with active engagement in voluntary work (e.g. school, sports). Moreover, the relative importance of different domains may change throughout people’s lives. Participation in paid work, for example, may become less relevant when reaching the retirement age or when diagnosed with a life-threatening disease.

Therefore, a flexible but standardized measurement of societal activity and participation is needed, which can be applied to a broad range of people, settings, and conditions. The National Institutes of Health (NIH) funded the development of the Patient-Reported Outcomes Measurement Information System (PROMIS), consisting of item banks that are universally relevant, rather than disease specific. The item banks allow for application of a selection of items that are specifically relevant to an individual. This allows for comparing people who participate on different subdomains of activity and participation with each other.

The conceptual model of PROMIS was developed based on the World Health Organisation (WHO) tripartite model of health. As part of social health several domains of societal participation and activities are included in the PROMIS item bank ‘Ability to Participate in Social Roles and Activities’. Based on the scientific literature and semi-structured interviews among 46 adults with and without health problems we are of the opinion that certain domains relevant to people are currently missing  in the aforementioned PROMIS item bank, for example, voluntary work and informal care.

Therefore, the objective of this project is to add new items that cover missing participation domains to the PROMIS item bank ‘Ability to Participate in Social Roles and Activities’.

Partners

Prof. dr. Allard van der Beek & Prof. dr. Monique Frings-Dresen, program leaders APH program Societal Participation & Health from VUmc and AMC, respectively

Dr. Caroline Terwee, VUmc Department of Epidemiology and Biostatistics, Dutch-Flemish PROMIS group

Contact details

Dr. Astrid de Wind, VUmc Department of Public and Occupational health.

Dr. Sietske Tamminga, AMC Department of Coronel Institute of Occupational Health.