PRO-based follow-up as a means of self-management support – an interpretive description of the patient perspective

BACKGROUND: There is an increasing focus on the use of patient-reported outcome (PRO) measures to improve the quality and effectiveness of health care. PRO-based follow-up is a new model of service delivery, where the patient’s PRO measures are used as the very basis for outpatient follow-up. OBJECTIVES: This study aimed to explore how patients with epilepsy experience the use of PRO-based follow-up in three outpatient clinics in the Central Denmark Region. We also sought to explain how these experiences relate to self-management. METHODS: Interpretive description was the methodological approach. We conducted in-depth individual interviews with 29 patients referred to PRO-based follow-up, each of whom had completed at least two PRO questionnaires. Participants were sampled based on purposive and theoretical sampling. RESULTS: PRO-based follow-up may support patients’ self-management by a) increasing awareness of psychosocial problems, b) improving communication, c) increasing understanding of symptoms, d) facilitating change in health behavior and e) strengthening autonomy. Inhibitors for PRO measures as a means of self-management support were identified as a) feelings of rejection and disconnection, b) incomprehension of purpose of PRO-based follow-up, c) PRO measures being too standardized and negative and d) lack of confidence in own ability to assess PRO questionnaires. CONCLUSION: The findings demonstrate broad variation in the influences of PRO measures on patient’s self-management in life with epilepsy. Sense of ownership may explain this variation. We suggest supplementary clinical initiatives in order to enhance the benefits from PRO-based follow-up, particularly on how patients are allocated to this health care service. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (10.1186/s41687-018-0067-0) contains supplementary material, which is available to authorized users.