Patient-controlled outpatient follow-up on demand for patients with rheumatoid arthritis: a 2-year randomized controlled trial.

INTRODUCTION: Scheduled routine visits in patients with rheumatoid arthritis (RA) may be in a stable period without active disease. Consequently, there is a demand for developing outpatient control procedures which cater to the needs of the individual patient. OBJECTIVE: This study aims to compare a patient-controlled outpatient follow-up system, Open Outpatient Clinic Programme (OOCP), with traditional scheduled routine follow-up (TSRF) regarding patient satisfaction and disease activity markers in RA patients. METHOD: In a 2-year randomized controlled trial, RA patients were allocated to OOCP or TSRF. OOCP patients had no scheduled appointments but were allowed acute appointments with their rheumatologist and had access to nurse-led consultations and a telephone helpline. Appointments for the TSRF group were scheduled according to routine procedures (clinical parameters: DAS-28, C-reactive protein, VAS pain, tender and swollen joint count, HAQ-DI and radiographs; psychological parameters: VAS patient satisfaction and EQ-5D). RESULTS: Of 282 patients, 239 completed the study (OOCP/TSRF characteristics: age 61.4 ± 10.5/60.9 ± 12.2 years, females 77/74%, ACPA positive 66/65%). At years 1 and 2, OCCP had fewer visits (year 2: 2.6 ± 1.6 vs. 3.5 ± 2; p < 0.0005) but more phone calls (year 2: 0.7 ± 1.4 vs. 0.1 ± 0.3; p < 0.0005) compared to TSRF. OOCP was comparable to TSRF regarding clinical and psychological outcome measures, and no radiographic progression was observed. CONCLUSIONS: OOCP was associated with significantly fewer visits but with more phone calls to the nurse and was comparable with TSGentofte University HospitalRF regarding clinical, psychological and radiographic outcomes. Thus, the organization of outpatient care according to OOCP may be applied to strengthen patient-centred care in patients with RA. ClinicalTrials.gov Identifier (July 20, 2020): NCT04476875 Key points • In a patient-controlled outpatient follow-up system, RA patients had significantly fewer visits compared to traditional follow-up. • The patient-controlled follow-up system was comparable with traditional follow-up regarding clinical, psychological and radiographic outcomes. • Organization of outpatient care according to a patient-controlled follow-up system may be applied to strengthen patient-centred care in patients with RA.

How do women with lupus manage fatigue? A focus group study.

OBJECTIVE: Half of patients with systemic lupus erythematosus (SLE) consider fatigue to be the most disabling disease symptom. To develop and promote strategies to prevent and control fatigue, this study aimed to describe how women with SLE manage the experience of fatigue. METHODS: Four focus groups were conducted with 27 women with SLE, and data were analyzed by means of framework analysis. Two patient representatives with SLE were part of the investigator team. RESULTS: The analysis revealed three main themes (i.e., learning how to be open about fatigue, learning to listen to the body, and learning to accept fatigue) and six sub-themes (i.e., the search for recognition, legitimization, planning and prioritizing, the body's limits and self-indulgence, adjusting life to comply with resources, and acceptance of dependence). CONCLUSION: Fatigue is the controlling element in everyday life of women with SLE. Patients try to integrate fatigue into their everyday lives by attempting to control it and meet the challenges of structure and planning. This study indicates a need for clinicians to acknowledge patients' fatigue, including supporting patients' own resources, offering information, and conversation about fatigue, as well as involving patients' relatives.

Impact of healthcare design on patients' perception of a rheumatology outpatient infusion room: an interventional pilot study.

Evidence-based healthcare design is a concept aimed at reducing stress factors in the physical environment for the benefit of patients and the medical staff. The objective of this study was to examine the impact of room modifications on patients' perception of an outpatient infusion room used for treating rheumatologic diseases. Patient and nurse interviews, a staff workshop and field observations were performed to identify environmental room factors important for the patients, and the room was modified accordingly. The changes included the colours, atmosphere and functionality of the room. Artificial plants and a water bubble wall were added to the room. Forty-four patients receiving intravenous biologic therapy for inflammatory arthritis completed a questionnaire before and after the intervention. The agreement with 25 statements regarding the environmental room factors was scored (range 0-4). A total score was calculated as the sum of all 25 scores (range 0-100). The median (range) age was 55 (28-78) years. Seventeen out of 25 scores improved significantly (p < 0.000-0.050), none deteriorated. The amount of decorating and room colours, for example, was scored significantly higher after the intervention (p < 0.000), and the atmosphere was considered significantly more comfortable and "safe" (p < 0.005). The total score increased from 63.0 (34-88) to 81.0 (48-100) (p < 0.000). The study suggests that room modifications according to the principles of evidence-based healthcare design may have the potential to improve patients' perception of outpatient infusion rooms used for treating rheumatologic diseases.