Does PRO mean being PROfessional in one's illness? : A study of how Patient Reported Outcomes becomes meaningful for both patients and healthcare professionals
Published 2023-12-07
How to Cite
Abstract
Using Patient Reported Outcomes (PRO) in meetings between patients and healthcare professionals (HCPs) can strengthen patient involvement and improve quality of care. The purpose of this study was to investigate how PRO-data becomes meaningful to use for both people with Multiple Sclerosis (PwMS) and HCPs.
The study consisted of 1) a systematic literature study, where existing PRO questionnaires within the MS area and whether patients have been involved in the development of them were mapped, 2) an interview study, where PwMS’ perspective on PRO was investigated, 3) a workshop where HCPs perspective on PRO was investigated.
There is an increased need to involve PwMS in developing PRO if PRO should be relevant for PwMS. For PRO questionnaires to be meaningful for both PwMS and HCPs, it should be possible to individualize the use of PRO as the disease, and symptom profile of MS can vary greatly. It should also be considered whether all patients benefit from PRO. To hold what is relevant for PwMS to discuss with HCPs, PRO questionnaires should include neurological symptoms, cognitive impairments, mental health and well-being, self-care, and social challenges related to MS. However, it is important to be aware that the HCP should have the competencies to handle these areas of MS. This is so that the HCPs can give evident advice about symptoms and treatment, but also, for the patient to receive the best possible treatment and guidance. Furthermore, it must not be time-consuming for the HCPs to use nor for the patients to complete PROs. However, whether the Danish healthcare system is prepared to incorporate an initiative as PRO, reflecting both patients’ and HCPs’ wishes and needs, can be discussed.
References
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