Adaptation of the US-American pediatric Patient-Reported Outcome Measurement Information System (PROMIS) for the German speaking area

• Applicant: Professorin Dr. Ulrike Ravens-Sieberer, since 9/2015
• Subject Area: Public Health, Healthcare Research, Social and Occupational Medicine
• Term: from 2015 to 2016
• Project identifier: Deutsche Forschungsgemeinschaft (DFG) - Project number 271504683

Over the past years, the assessment of the patient`s own subjective perspective has gained increasing importance in medicine and health research. These so called patient-oriented outcomes (PROs) are not only an important outcome in the clinical field and in various research contexts, but they can be used as indicators for health care research and health care utilization. To address the growing need for PROs, the PROMIS (Patient Reported Outcome Measurement Information System) network was established in the USA in 2004. PROMIS aims to develop standardized, reliable and valid questionnaires for the assessment of health in children and adults, and to implement these in routine care. For this purpose, internationally comparable item banks are developed, which can be used to integrate static paper-and-pencil questionnaires as well as dynamic computer-adaptive tests (CATs) into routine care in the long run. The objective of the present research proposal is the translation and linguistic validation of six pediatric US-American PROMIS item banks into a universal German version. The translation follows the universal approach with the goal to obtain a universal German version which is applicable in the German speaking area. The forward translation of 82 items occurs into three language versions. After the reconciliation of the forward translations, a first universal German version is produced which is then back-translated into English. Findings from this back-translation feed back to the first universal German version. This modified version is then tested on 60 children and adolescents to ensure that the items are understood correctly and to identify any comprehension difficulties. Focus group interviews are performed with the parents of the children to test the proxy-version. Collaboration with the US-American PROMIS project assures not only a standardized approach and comparison, but also opens diverse opportunities for the implementation of German item banks, e.g. as the basis for the programming of CATs. CATs not only enable a better and more precise assessment of the individual health status, but can furthermore contribute towards a more reliable estimate of the health provision and treatment needs of children and adolescents. In the long run, this can also strengthen the participation and emancipation of children and their families, which in turn can improve the patient-physician communication and even patient compliance. The effectiveness of CATs in routine care will be tested in a multicenter evaluation study on children and adolescents in outpatient, semi- and fully-inpatient care. It is to be expected that ultimately this approach will improve the assessment of disease burden in children and adolescents.

• DFG Programme: Research Grants
• International Connection: Switzerland, USA
• Cooperation Partners: Professor Dr. David Cella; Professor Dr. Holger Schmid
• Ehemalige Antragstellerin: Dr. Veronika Ottova-Jordan, until 8/2015