Background

Early diagnosis and modern treatment have changed everyday life of patients with rheumatoid arthritis (RA). However, symptoms are still pronounced several years after diagnosis. The aim of this study is therefore to synthesise the perception of everyday life in men and women with contemporary treated RA over the course of the first decade after diagnosis. This will be achieved by comparing subjective experiences with quantitative measures of disability and disease activity.

Methods

A longitudinal convergent mixed method was used. Thirty-one patients, clinically diagnosed with RA and ≥ 18 years of age, were recruited from the TIRA-2 project in southeast Sweden. Patients were followed over a decade regarding disease activity (DAS28), grip force (Grippit), pain intensity (VAS mm) and activity limitations (HAQ). Participation in valued life activities (VLA-swe) was assessed 10 years after diagnosis. The patients took part in individual interviews three- and ten-years post-diagnosis. Quantitative data were analysed through descriptive analyses and linear mixed models. The interviews were analysed using directed content analyses. The results from the quantitative and qualitative analyses were integrated in accordance with the chosen design.

Results

Discrepancies between the quantitative and qualitative results were revealed, along with differences between sexes. Women expressed more problems related to disease activity and grip force, which did not coincide with the quantitative results. In fact, women experienced difficulties in activities despite decreased disease activity. Furthermore, their pain score changed quantitatively over time, which was not expressed in the interviews. These disconfirming results were not seen in men. Both women and men displayed confirming results regarding activity limitation. Some issues, such as with basic needs, were more visible quantitatively than through interviews.

Conclusions

Men and women with contemporary treated RA still experience disability a decade after diagnosis. Additionally, patients’ experiences and quantitatively measured outcomes do not always coincide. The qualitative data adds information and thereby complements the quantitative data on disability. Our results confirm the importance of person-centred rehabilitation in optimising patients’ possibilities for participation in everyday life.

Clinical trial number

Not applicable.

Background Support from significant others is important for participation in everyday life for persons with rheumatoid arthritis (RA). Meanwhile, significant others also experience limitations. Aims To explore how support is expressed by persons with RA and significant others, and how support relates to participation in everyday life of persons with RA. Material and methods Sixteen persons with RA and their significant others participated in individual semi-structured interviews. The material was analyzed using dyadic analysis. Results Persons with RA and significant others reported that RA and support had become natural parts of everyday life, especially emotional support. The reciprocal dynamics of support were also expressed as imperative. Also, support from people outside of the dyads and well-functioning communication facilitated everyday life. Conclusions Significant others and the support they give are prominent factors and facilitators in everyday life of persons with RA. Concurrently, the support persons with RA provide is important, along with support from outside of the dyads. Significance The results indicate that the interaction between persons with RA and the social environment is central to gain insight into how support should be provided for optimal participation in everyday life. Significant others can preferably be more involved in the rehabilitation process.

Background

Adults with attention deficit/hyperactivity disorder (ADHD) or autism spectrum disorder (ASD) face multiple challenges in obtaining and maintaining employment.

Aims

To identify and describe how adults with ADHD or ASD experienced their ability to work and what factors affected their ability to find a sustainable work situation over time.

Methods

Individual in-depth interviews were performed with 20 purposively sampled participants with ADHD/ASD. Data were analysed inductively using reflexive thematic analysis.ResultsThree themes were identified, describing (1) one’s own cognitive abilities and challenges, (2) enablement by flexibility and acceptance in the work environment, and (3) accumulated stress that makes the work situation unsustainable over time.

Conclusions

Over time, a lack of continuity and predictability of support measures caused great stress and exhaustion, with severe consequences for working life and in life in general. Adaptations needed to be individually tailored and include nonoccupational factors.

Significance

The study shows that adults with ADHD/ASD need long-term interventions that flexibly adapt to individual needs, as they vary over time. The findings suggest that occupational therapists and other health care providers, employers, employment services and other involved agencies should pay a greater deal of attention to stability and predictability over time.

Background: Persons with chronic pain experience a lack of support after completing rehabilitation and the responsibility for the return-to-work (RTW) process is taken over by the employer. In addition, employers describe not knowing how to support their employees. Smartphone apps have been increasingly used for self-management, but there is a lack of available eHealth apps with evidence-based content providing digital support for persons with chronic pain and their employers when they return to work.

Objective: This study aims to describe the development of a digital support application with evidence-based content that includes a biopsychosocial perspective on chronic pain for sustainable RTW for persons with chronic pain and their employers (SWEPPE [Sustainable Worker Digital Support for Persons With Chronic Pain and Their Employers]).

Methods: A user-centered agile design approach was applied. The multidisciplinary project team consisted of health care researchers, a user representative, and a software team. A total of 2 reference groups of 7 persons with chronic pain and 4 employers participated in the development process and usability testing. Mixed methods were used for data collection. The design was revised using feedback from the reference groups. The content of SWEPPE was developed based on existing evidence and input from the reference groups.

Results: The reference groups identified the following as important characteristics to include in SWEPPE: keeping users motivated, tracking health status and work situation, and following progress. SWEPPE was developed as a smartphone app for the persons with chronic pain and as a web application for their employers. SWEPPE consists of six modules: the action plan, daily self-rating, self-monitoring graphs, the coach, the library, and shared information with the employer. The employers found the following functions in SWEPPE to be the most useful: employees' goals related to RTW, barriers to RTW, support wanted from the employer, and the ability to follow employees' progress. The persons with chronic pain found the following functions in SWEPPE to be the most useful: setting a goal related to RTW, identifying barriers and strategies, and self-monitoring. Usability testing revealed that SWEPPE was safe, useful (ie, provided relevant information), logical, and easy to use with an appealing interface.

Conclusions: This study reports the development of a digital support application for persons with chronic pain and their employers. SWEPPE fulfilled the need of support after an interdisciplinary pain rehabilitation program with useful functions such as setting a goal related to RTW, identification of barriers and strategies for RTW, self-monitoring, and sharing information between the employee and the employer. The user-centered agile design approach contributed to creating SWEPPE as a relevant and easy-to-use eHealth intervention. Further studies are needed to examine the effectiveness of SWEPPE in a clinical setting.

Background and purpose:To reduce the individual, societal, and economic burden of the high sick leave rates due to chronic pain, it is essential to find effective strategies for increasing return to work (RTW). Although multimodal rehabilitation programs (MMRPs) may have positive effects on RTW, the results are inconsistent. This study explores the factors that contribute to decreasing sick leave and increasing RTW in patients with chronic pain who completed a MMRP. Method:Four focus groups and three individual interviews were conducted. In total, 18 patients were interviewed. All patients had chronic pain and had completed a MMRP. They were either employed or unemployed, either working to some degree or fully on sick leave. The data were analysed using qualitative content analysis. Results:Three main categories were identified: Knowledge and understanding-prerequisites for tailored solutions; Individual adaptations-necessary but difficult to implement; and Stakeholder collaboration-needs improvement. Conclusion:The participants described a variety of facilitating and limiting factors that created complex prerequisites for RTW. This finding makes it clear that these patients need tailored interventions and strong collaboration among all stakeholders throughout the rehabilitation process. Tailored interventions and collaborations could improve the effectiveness of MMRPs.

Background and purpose Chronic pain is a major reason for sick leave worldwide. Interdisciplinary pain rehabilitation programs (IPRPs), workplace interventions, and stakeholder collaboration may support patients in their return to work (RTW). Few studies have examined stakeholders experiences of important components in the RTW rehabilitation process for patients with chronic pain, especially in the context of IPRP. This study explores and describes stakeholders experiences with stakeholder collaboration and factors related to RTW for patients with chronic pain who have participated in IPRP. Methods Six focus groups, three pair and four individual interviews were conducted with a total of 28 stakeholder representatives from three societal and three health care stakeholders. Data were analyzed using qualitative content analysis. Results The participants revealed that stakeholder collaboration and a tailored RTW rehabilitation plan were important strategies although they noted that these strategies were not working sufficiently efficient as presently implemented. The different stakeholders paradigms and organizational prerequisites were described as hindrances of such strategies and that the degree of tailoring depended on individual attitudes. Conclusions More knowledge transfer and flexibility, clearer responsibilities, and better coordination throughout the RTW rehabilitation process may increase the efficiency of stakeholder collaboration and support for patients.

BACKGROUND: Clinical studies with work participation (WP) as an outcome domain pose particular methodological challenges that hamper interpretation, comparison between studies and meta-analyses.

OBJECTIVES: To develop Points to Consider (PtC) for design, analysis and reporting of studies of patients with inflammatory arthritis that include WP as a primary or secondary outcome domain.

METHODS: The EULAR Standardised Operating Procedures were followed. A multidisciplinary taskforce with 22 experts including patients with rheumatic diseases, from 10 EULAR countries and Canada, identified methodologic areas of concern. Two systematic literature reviews (SLR) appraised the methodology across these areas. In parallel, two surveys among professional societies and experts outside the taskforce sought for additional methodological areas or existing conducting/reporting recommendations. The taskforce formulated the PtC after presentation of the SLRs and survey results, and discussion. Consensus was obtained through informal voting, with levels of agreement obtained anonymously.

RESULTS: Two overarching principles and nine PtC were formulated. The taskforce recommends to align the work-related study objective to the design, duration, and outcome domains/measurement instruments of the study (PtC: 1-3); to identify contextual factors upfront and account for them in analyses (PtC: 4); to account for interdependence of different work outcome domains and for changes in work status over time (PtC: 5-7); to present results as means as well as proportions of patients reaching predefined meaningful categories (PtC: 8) and to explicitly report volumes of productivity loss when costs are an outcome (PtC:9).

CONCLUSION: Adherence to these EULAR PtC will improve the methodological quality of studies evaluating WP.

Chronic pain-related sickness absence is an enormous socioeconomic burden globally. Optimized interventions are reliant on a lucid understanding of the distribution of social insurance benefits and their predictors. This register-based observational study analyzed data for a 7-year period from a population-based sample of 44,241 chronic pain patients eligible for interdisciplinary treatment (IDT) at specialist clinics. Sequence analysis was used to describe the sickness absence over the complete period and to separate the patients into subgroups based on their social insurance benefits over the final 2 years. The predictive performance of features from various domains was then explored with machine learning-based modeling in a nested cross-validation procedure. Our results showed that patients on sickness absence increased from 17% 5 years before to 48% at the time of the IDT assessment, and then decreased to 38% at the end of follow-up. Patients were divided into 3 classes characterized by low sickness absence, sick leave, and disability pension, with eight predictors of class membership being identified. Sickness absence history was the strongest predictor of future sickness absence, while other predictors included a 2008 policy, age, confidence in recovery, and geographical location. Information on these features could guide personalized intervention in the specialized healthcare. PERSPECTIVE: This study describes sickness absence in patients who visited a Swedish pain specialist interdisciplinary treatment clinic during the period 2005 to 2016. Predictors of future sickness absence are also identified that should be considered when adapting IDT programs to the patient's needs.

Background: Sexual health needs are insufficiently met for persons living with rheumatological diseases and it is necessary to create better ways to meet these needs.Objective: To co-create a working model to improve sexual health for persons living with rheumatological diseases, that can be used by rheumatological teams in regular rheumatology practice.Design: This study applied a co-creation design with three key features: 1) it took a systems perspective with emergent multiple interactive entities; 2) the research process was viewed as a creative endeavour with strong links to design, while human imagination and the individual experience of patient and staff were at the core of the creative design effort; 3) the process of the co-creative efforts was as important as the generated product.Results: A model defining the role of the patient, the professionals, and the team in optimizing sexual health for persons living with rheumatological diseases was co-created. The model can be seen as a practice guideline, which includes the support needed from and to each participant in the process of promoting sexual health, while being within the professional scope of the professionals’ knowledge and capacity, and in line with the needs of the persons living with rheumatological diseases.Discussion and Conclusions: The co-creative work process identified crucial factors in promoting sexual health, resulting in a useful model for patients, professionals and teams. Co-creation was experienced to be a useful research design to improve rheumatological care, through valuing and using the competence of all research members equally.

Improving work participation for individuals with rheumatic and musculoskeletal diseases (RMDs), has gained increasing interest over the last 10 years. New approaches are based upon increasing adoption of a biopsychosocial approach to improving work participation, incorporating evidence that health professionals within multidisciplinary teams have a key and critical role. In particular, interaction between health professionals and employers, and rehabilitation services that are linked to the workplace are key elements for improving work participation for people with RMDs. This review outlines recent research that underpins approaches for health professionals to develop their role in improving work participation for people with RMDs based on recent research; it outlines how to measure work-related outcomes in clinical practice, models of work participation, and approaches for health professionals to improve work participation outcomes. The potential for developing the role of health professionals in future years is also outlined.