Development of a complex Interdisciplinary Nurse-coordinated SELf-MAnagement (INSELMA) intervention for patients with inflammatory arthritis.

BACKGROUND: Apart from a consistent focus on treating inflammation, patients with inflammatory arthritis (IA) report a range of unmet needs. Many experience not only residual symptoms but also various other physical, psychological, and social effects. Therefore, this study aimed to develop a complex Interdisciplinary Nurse-coordinated self-management (INSELMA) intervention for patients with IA, as an add-on treatment to usual outpatient care for those with substantial disease impact. METHODS: This study followed the British Medical Research Council's updated framework for developing complex interventions. The process encompassed the following steps: (1) The evidence base was identified; (2) workshops were held, involving 38 relevant stakeholders (managers, physicians, nurses, physiotherapists, occupational therapists, social workers, psychologists from hospitals and municipalities, and two patient research partners), to discuss and further develop the preliminary ideas; (3) relevant theories were identified (i.e., self-efficacy, acceptance and commitment therapy, and health literacy); (4) the intervention was modeled and remodeled and (5) the results, describing the final INSELMA intervention and outcomes. RESULTS: The INSELMA intervention encompasses an initial biopsychosocial assessment, which is performed by a rheumatology nurse. Then, activities that the participant wishes to improve are identified and goals are set. The nurse refers the participant to a multidisciplinary team and coordinates their support and relevant services in the participant's municipality. In addition, the health professionals have the opportunity to hold two interdisciplinary conferences during the intervention period. The participant and the health professionals work to achieve the set goals during a 6-month period, which ends with a status assessment and a discussion of further needs. The INSELMA intervention aims to increase self-management, reduce the impact of IA (e.g., pain, fatigue, sleep problems, and absenteeism), and increase self-efficacy, quality of life, mental well-being, work ability, and physical activity. CONCLUSIONS: The development of the INSELMA intervention involved stakeholders from two Danish rheumatology outpatient clinics, patient research partners and municipalities. We believe that we have identified important mechanisms to increase the self-management and quality of life of people with IA and to decrease the disease impact in those who are substantially affected. The health professionals involved have developed competences in delivering the intervention and it is ready to be tested in a feasibility study.

Self-management support needs of patients with inflammatory arthritis and the content of self-management interventions: a scoping review.

BACKGROUND: Self-management skills can empower a person to manage the physical, psychological, and social impact of a health condition. However, the components of self-management interventions differ widely between studies and interventions. By performing a scoping review, we aimed to describe patients' self-management needs and how health professionals (HPs) can provide effective self-management support to patients with inflammatory arthritis (IA). OBJECTIVES: 1) to identify the evidence for self-management support needs of patients with IA, and 2) to identify the content (theory/theoretical approach, mode of delivery, duration and frequency) of self-management interventions that target patients with IA. METHODS: In May 2021, we performed a systematic literature search (from 2000 onward) in five databases (CINAHL (Ebsco), Cochrane Library, Embase (Ovid), Medline (Ovid) and PsycINFO (Ovid)) regarding self-management in patients with IA. RESULTS: Out of 11,748 records identified, we included 31 articles describing patients' support needs and 33 articles describing the content of self-management interventions. Patients' support needs were sorted into six topics: 1) disease impact and the pharmacological treatment, 2) care continuity and relations with HPs, 3) the importance of non-pharmacological treatment, 4) the need for support from family and friends, 5) support needs related to work issues, and 6) contextual preferences for self-management support. The theory/theoretical approach, mode of delivery, duration and frequency varied widely and were often unclearly or insufficiently described. In addition, the self-management concept was scarcely - or not - defined in the included articles. The identified topics for support needs were compared with the described content in the included articles. Only a few self-management interventions focused on patients' need for support in relation to work, and to family and friends. CONCLUSION: HPs provided self-management support to patients with IA in various ways, but there were gaps between the patients' support needs and the identified interventions. In developing self-management interventions, the self-management concept needs to be defined and a clear theory is required to support the development of the intervention. Future studies should seek to investigate various modes of delivery, frequency and duration, to develop effective interventions that meet patients' support needs.

Experiences of group-based cognitive behavioural therapy for insomnia among patients with rheumatoid arthritis: a qualitative study.

OBJECTIVE: Rheumatoid arthritis (RA) is a chronic autoimmune disease, with a prevalence of insomnia disorders in up to 70%. Patients' experiences of participating in group-based cognitive behavioural therapy for insomnia (CBT-I) are sparsely explored, and CBT-I has not been evaluated in patients with RA until now. Therefore, the aim was to explore patients' experiences of CBT-I and how the components of CBT-I were incorporated in sleep management. DESIGN: We conducted a qualitative study with semi-structured interviews. The interview guide was developed based on CBT-I, with questions that explicitly explored the participants' experiences of sleep education and the behavioural components of CBT-I. SETTING: Interviews were conducted one-to-one at Center for Rheumatology and Spine Diseases, Copenhagen. PARTICIPANTS: Patients with RA who had received CBT-I as intervention in a randomised controlled trial (N=11). The analysis was based on a reflexive thematic method. RESULTS: Five themes were identified (1) When knowledge contributes to an altered perception of sleep, referring to the reduced misperception and increased motivation that followed sleep education, (2) Overcoming habits and perceptions to accelerate sleep onset, referring to barriers related to sleep behaviour and how stimulus control enabled them to find meaningful behaviour, (3) The sleep window of challenges in learning how to sleep right referring to that payoff from sleep restriction did not come easily or by magic, and commitment gave them confidence to continue, (4) Relaxation becomes a behavioural habit and goes beyond sleep, referring to a means to achieve a relaxed body and mind and how they thereby coped better with RA-related symptoms and (5) Break the cycle and regain control referring to how trust in one's own accomplishment was crucial to reducing worrying. CONCLUSION: The process towards eliminating insomnia was a bodily experience and involved a changed mindset that resulted in an alteration of behaviour and cognitions.