Person-centered care in nurse-led outpatient rheumatology clinics. From experience to measurement

Sammanfattning: AbstractAim: To describe and understand patients’ experiences as a means to conceptualize and evaluate outpatient person-centered care (PCC) in nurse-led rheumatoid arthritis (RA) clinics.Methods: Persons with RA were interviewed about how they experienced their nurse-led outpatient care and about the meaning of living with persistent RA. Interviews were analyzed by qualitative content analysis and hermeneuticphenomenology. Based on these results, existing PCC frameworks and hypothetical logical reasoning, a conceptual framework for nurse-led outpatient PCC was developed and used to operationalize a PCC instrument for outpatientcare in rheumatology (PCCoc/rheum). Acceptability and content validity of the PCCoc/rheum were evaluated, and its measurement properties were tested according to Rasch measurement theory (RMT).Results: The experience of nurse-led outpatient care was expressed as social environment, professional approach and value-adding measures, all relating to the degree of PCC. Living with persistent RA was revealed as an existence dominated by painful symptoms and treatment, radical changes and limitations in life, a continual struggle to cope with life and to master the illness, and a dependency on those who are close by and the world around. Results also pointed to the need for a stronger PCC approach. An outpatient framework was conceptualized with five related domains, and was used to develop the PCCoc/rheum, which showed good acceptability and contentvalidity. RMT supported the accordance between the PCCoc/rheum and the conceptual framework, and its measurement properties were generally supported.Conclusions: Experiences of persons with RA support a central role for PCC. The conceptual framework and the PCCoc/rheum have potentials to improve implementation and evaluation of outpatient PCC and contribute to qualityof care from a PCC perspective in nurse-led rheumatoid arthritis clinics.