AB1337-HPR PATIENTS’ EXPERIENCE OF INVOLVEMENT IN A RHEUMATOLOGY OUTPATIENT CLINIC
Authors: P. Toftegaard
Journal: Annals of the Rheumatic Diseases (2020)

Background: Involvement in own treatment and care is a wish from patients and a vision from politicians in Denmark. (1,2) In outpatient rheumatology patient involvement also leads to increased patient satisfaction, better quality of treatment and better utilization of resources in health care. (3,4,5) On the basis of this we ought to involve our patients at our Outpatient Clinic in Svendborg, but are we? Objectives: To gain knowledge about how patients with rheumatoid arthritis experience involvement in treatment and care in the Rheumatology Outpatient Clinic, Svendborg. Methods: An interview study of six patients with subsequent analysis based on Ricoeur. (6) Patient inclusion: patients with rheumatoid arthritis in remission by DAS28 for more than 2 years. The participants elected were 3 males and 3 female at the age of 30 – 78 visiting the clinic during Marts and April 2019. They were asked about their experience of involvement from time of diagnosis until present time. Results: The study provided knowledge that patient involvement was new to the participants. This is also found in other literature about patient involvement. (7,8) All participants in this study felt involved in own care and treatment. The involvement was based on being seen and heard as persons with individual needs and not just as patients with arthritis. The way the participants experienced involvement showed that there are individual differences in how to provide the experience. In order to clarify what involvement meant for each patient, relationship with the health professional was necessary, as other studies also shows. (7,8) The relationship was conditioned by continuity, trust, care and mutual respect. For all the participants informed consent was equal to involvement. Disease activity or fear of this was the main reason for feeling involved this way. Literature describes the same: amongst other factors, the severity of the disease is significant for the patients desire to be involved. (7,8) Conclusion: The participants experienced involvement in own care and treatment. The relation to the health professional was important providing this experience. All defined involvement as informed consent as it also is to many healthcare professionals. (9) All participants needed time to reflect on what involvement meant as none of them had heard of it before. Patient involvement needs education of both patients and healthcare professionals to be taken further than informed consent. References: [1]Ministeriet for Sundhed og Forebyggelse. Dialogpapir om øget inddragelse af patienter og pårørende: Ministeriet for Sundhed og Forebyggelse; 2014. [2]Kompetencecenter for patientoplevelser. Den landsdækkende undersøgelse af patientoplevelser 2016. 2016 [3]Hewlett S, Mitchell K, Haynes J, Paine T, Korendowych E, Kirwan J. Patient-initiated hospital follow-up for rheumatoid arthritis. Rheumatology 2000;39(9):990-997. [4]Schougaard LMV, Larsen LP, Jessen A, Sidenius P, Dorflinger L, de Thurah A, et al. AmbuFlex: tele-patient-reported outcomes (telePRO) as the basis for follow-up in chronic and malignant diseases. Quality of Life Research 2016;25(3):525-534. [5]Hvidbog: national handlingsplan for leddegigt. S.l.: Vision Leddegigt 2020; 2016. [6]Lindseth A, Norberg A. A phenomenological hermeneutical method for researching lived experience. Scand J Caring Sci 2004;18(2):145-153. [7]Nota I, Drossaert CH, Taal E, van de Laar, Mart AFJ. Arthritis patients’ motives for (not) wanting to be involved in medical decision-making and the factors that hinder or promote patient involvement. Clin Rheumatol 2016;35(5):1225-1235. [8]Joseph-Williams N, Elwyn G, Edwards A. Knowledge is not power for patients: A systematic review and thematic synthesis of patient-reported barriers and facilitators to shared decision making. Patient Education and Counselling 2013;94(3):291-309. [9]VIBIS. Læger og sygeplejerskers forståelse af patientinddragelse. 2014 Disclosure of Interests: None declared