A Core Outcome Set for the Evaluation of New Healthcare Programs in Sweden

OBJECTIVES: Evaluation of healthcare programmes focusing on participation and shared decision-making, such as person-centred care (PCC), generally report beneficial results on symptom burden and self-efficacy. However, traditional outcomes for economic evaluations are less sensitive to these changes, limiting the availability of information for decision making and prioritisation. The aim of this study is to develop a core outcome set for the evaluation of such programmes, including economic evaluations.

METHODS: A Delphi study was conducted with participants representing 4 stakeholder groups; patients, healthcare workers, researchers, and managers/leaders. A questionnaire was developed using outcomes retrieved from a systematic review on the cost-effectiveness of PCC, thereafter, complemented based on recommendations during pilot interviews. The study consisted of 2 rounds where outcomes were scored from 1-9 based on their perceived importance for the decision-making process. Participants could suggest new outcomes during the 1^st round that were included in round 2. After 2 rounds, an outcome was deemed critical to the core outcome set if scored between 7-9 by at least 70% of the participants. These results will be discussed in a consensus meeting (autumn 2023) with two representatives for each stakeholder group, to generate the final core outcome set.

RESULTS: Outcomes were grouped into; health and quality of life, capabilities and prerequisites, process measures related to care implementation or digitalization, and health economics. At the end of round 1, 58 participants (patients n=14; healthcare workers n=16; researchers n=17; managers/leaders n=10) had scored 52 outcomes and recommended a further 13 for inclusion in round 2 after removing duplicates. In round 2, 46 participants had re-scored the outcomes (missing n=12), with scores being changed between scoring thresholds on 168 separate occasions.

CONCLUSIONS: The preliminary core outcome set after the completion of round 2 highlights stakeholder preferences towards outcomes corresponding to capabilities and prerequisites, and process measures related to care implementation.