ISQUA18-1696Co-Creating a Set of Patient Reported Outcome Measures within Two National Psychiatric Registries in Denmark

Abstract

Objectives: A need to supplement the current data collection with Patient Reported Outcome Measures (PROM) for two national Danish clinical psychiatric registries has arisen. The purpose of using patient reported outcomes is to support the clinical dialogue at the individual level underlining patient centered care and indicator monitoring at the aggregated patient level. PRO-Psychiatry was established in 2016 aiming to select and conceptualize a set of PROM for use with patients aged 18 years or older diagnosed with depression or schizophrenia. Method(s): PRO-Psychiatry is organized with a multi professional, cross-sectional steering group (SG) including patient representatives; a patient peer board (PPB) representing both disease areas; a project leader and a project assistant with user background. A dynamic developmental process was initiated. It included a literature search, framework decisions by the SG, and preconditions set by the national clinical databases, and an adapted co-creating process between the SG and PPB. The PPB discussed and selected during 3 workshops: PROM topics and the items most relevant to patients. They further highlighted challenges and advantages in regard to mode of data collection and the use of PROM, as well as graphical format of the online data collection site and data feedback to the patients. Finally, the patients' "need to know and nice to know" information requirements for using the PROM were discussed. Based upon input from the PPB the SG discussed and decided the PROM and the concept for application by consensus. Result(s): Originally, the SG decided to select 10-20 PROM items covering; symptom burden, functioning, goal and goal attainment, and quality of life. Measurements validated in Danish were prioritized. Data should be collected prior to any out-patient contact for both patient groups (depression or schizophrenia), and at admission and discharge for patients with depression. The literature search revealed more than 35 possible questionnaires, which were reviewed for relevance, and 38 items covering 9 scales were pre-selected. The PPB assessed these items, suggested alternative wording and answer categories, new topics and prioritized 20 items. These 20 items were supplemented by 4 items to cover 5 full scales. A pilot test was performed (N= 19) and 18 PROM items covering the topics: well-being, functioning, global health, cognitive functioning, suicide ideation and self-harm were selected for clinical testing. The patients emphasized the need to offer multiple mode data collection options via the web and on-site, a simple unambiguous, easy understandable graphical set up of the PROM, a read aloud function, and display of results in the electronic patient file per item. Further, the patients stressed the need to use the results for self-management and emphasized display of the results at the webbased individual patient portal, which is accessible with the unique patient identifier. "Need to know information" in regard to filling out the PROM should be minimalistic, but definitely state that data were protected by Danish law. Extensive "Nice to know information" should be available for patients via a link from the PROM-portal. Conclusion(s): The adapted process based upon a high degree of patient involvement resulted in a set of 18 PROM items and a concept for application of the PROM. Clinical test is planned for spring 2018.