Person-centred care and preferred outcomes in early rheumatoid arthritis — the patients’ perspective

Sammanfattning: Rheumatoid arthritis (RA) is a chronic, systemic, inflammatory joint disease that affects all aspects of life. Rheumatology care strives to achieve optimal health based on person-centred care (PCC). Effective treatment is available, but patients still experience unmet needs.Aims: The overall aim of this thesis was to explore patients' perspectives of PCC and preferred outcomes in early RA. Specific aims: to explore patients’ perceptions of PCC (I), to describe the understanding of health among patients (II), to explore patients’ preferred treatment outcomes during their first two years with RA, in a Swedish context (III), and to explore preferred treatment outcomes and how these preferences change throughout the early disease stage across three European countries (IV).Methods: Individual interviews were performed and analysed using abductive qualitative content analysis (I) and a phenomenographic approach (II). In papers III-IV, a longitudinal, multicentre study including individual and focus group interviews was performed and analyzed using Qualitative Analysis Guide of Leuven (QUAGOL) (III). The meta-synthesis was inspired by meta-ethnography and QUAGOL (IV).Results: PCC includes to meet professional competence, access to care, support and involvement in care, and to be satisfied and achieve optimal health (I). Health was understood as belonging, happiness, freedom, and empowerment (II). The core preferred treatment outcome were “mastering a new life situation” through disease control, autonomy, regained identity, and joy (III). From a European perspective, it was to “live a normal life” through disease control, physical performance, self-accomplishment, and well-being (IV).Conclusions: PCC includes meeting supportive, dedicated, and professional healthcare professionals, easy access to care, and the ability to be involved in decision-making. Three key aspects were highlighted regarding preferred outcomes: independence, empowerment and well-being. Independence implies a meaningful life and a sense of freedom, empowerment reflects patient's ability to engage in selfmanagement, and well-being encompasses the broader spectrum of physical, mental and social health; which ultimately captures the holistic benefits of a person-centred approach.