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.

OBJECTIVES: To study differences regarding pain and activity limitations during the 3 years following diagnosis in women and men with contemporary treated early RA compared with their counterparts who were diagnosed 10 years earlier.

METHOD: This study was based on patients recruited to the Early Intervention in RA (TIRA) project. In the first cohort (TIRA-1) 320 patients were included in time for diagnosis during 1996-1998 and 463 patients were included in the second cohort (TIRA-2) during 2006-2009. Disease activity, pain intensity (Visual Analogue Scale, VAS), bodily pain (BP) in the 36-item Short Form Health Survey (SF-36), activity limitations (Health Assessment Questionnaire, HAQ), and medication were reported at inclusion and at follow-up after 1, 2, and 3 years.

RESULTS: Disease activity, pain, and activity limitations were pronounced at inclusion across both genders and in both cohorts, with some improvement observed during the first year after diagnosis. Disease activity did not differ between cohorts at inclusion but was significantly lower at the follow-ups in the TIRA-2 cohort, in which the patients were prescribed traditional disease-modifying anti-rheumatic drugs (DMARDs) and biological agents more frequently. In TIRA-2, patients reported significantly lower pain and activity limitations at all follow-ups, with men reporting lower pain than women. Women reported significantly higher activity limitations at all time points in TIRA-2.

CONCLUSIONS: Pain and activity limitations were still pronounced in the contemporary treated early RA cohort compared with their counterparts diagnosed 10 years earlier and both of these factors need to be addressed in clinical settings.

This study aimed to examine the difficulties with performing valued life activities in relation to pain intensity in women and men with rheumatoid arthritis (RA). In total, 737 persons with RA (73 % women) from three rheumatology units in Sweden responded to a questionnaire measuring performance of 33 valued life activities and self-rated pain. The relationships between performance of valued life activities (VLAs) and pain (measured by visual analogue scale (VAS)) were analysed based on gender. Multiple linear regression analyses were conducted with the total VLA score as dependent variable. Women reported more pain and difficulties in performing valued life activities than men. Across genders, 85 % reported at least one valued life activity affected by RA. Significantly more women than men encountered difficulties in performing some activities such as cooking, gardening and meeting new people. Women reported higher pain intensity (35 mm) than men (31 mm). Almost all 33 difficulty ratings for valued life activities were higher among persons with high pain (>40 mm) than persons with lower pain. Difficulty ratings for valued life activities correlated positively with pain in persons with lower pain, but not among those with high pain. The results highlight the importance of addressing pain, especially among women with RA, as they reported pain to impact on their valued life activities. Interestingly, this was evident also in women with lower levels of pain.

Psychological distress is a well-known complication in rheumatoid arthritis (RA), but knowledge regarding emotions and their relationship to participation restrictions is scarce. The objective of the study was to explore emotions related to participation restrictions by patients with early RA. In this study, 48 patients with early RA, aged 20-63 years, were interviewed about participation restrictions using the critical incident technique. Information from transcribed interviews was converted into dilemmas and linked to International Classification of Functioning, Disability, and Health (ICF) participation codes. The emotions described were condensed and categorized. Hopelessness and sadness were described when trying to perform daily activities such as getting up in the mornings and getting dressed, or not being able to perform duties at work. Sadness was experienced in relation to not being able to continue leisure activities or care for children. Examples of fear descriptions were found in relation to deteriorating health and fumble fear, which made the individual withdraw from activities as a result of mistrusting the body. Anger and irritation were described in relation to domestic and employed work but also in social relations where the individual felt unable to continue valued activities. Shame or embarrassment was described when participation restrictions became visible in public. Feelings of grief, aggressiveness, fear, and shame are emotions closely related to participation restrictions in everyday life in early RA. Emotions related to disability need to be addressed both in clinical settings in order to optimize rehabilitative multi-professional interventions and in research to achieve further knowledge.

Background: Over the last decades the RA-treatment strategies have changed considerably. Routines for early RA diagnosis and instituted disease modifying anti rheumatic drugs (DMARDs) have been established. In the early 2000s biologic agents also became available for treatment purposes. Despite these altered and improved strategies RA patients continue to report pain and activity limitations; women more so than men.

Objectives: To study differences regarding pain and activity limitations during the first three years after diagnosis of RA in today's patients compared with patients diagnosed 10 years earlier from a gender perspective.

Methods: This study was based on patients recruited to the project “early interventions in RA” (TIRA). In the first cohort (TIRA-1) 320 patients were included during 1996-1998. In the second cohort (TIRA-2) 463 patients were included during 2006-2008. Disease activity score 28 joint count (DAS-28) and medication were registered. Pain intensity (VAS), bodily pain (BP) in Short Form36 (SF-36) and activity limitation (Health Assessment Questionnaire, HAQ) were reported at inclusion and at follow-ups after one, two and three years.

Results: Disease activity did not differ between cohorts at inclusion, but was significant lower at the follow ups in the TIRA-2 cohort compared with the TIRA-1 cohort. Patients in TIRA2 were prescribed traditional DMARD:s and biologic agents more frequent than in TIRA-1. The TIRA-2 patients reported significantly higher pain intensity and activity limitations at inclusion but lower pain intensity and activity limitations at all follow-ups than TIRA-1 patients. There were no significant differences between cohorts regarding bodily pain at inclusion, but thereafter the TIRA-2 patients showed significant lower bodily pain than the TIRA-1 patients. Men reported lower activity limitation than women in TIRA-1; otherwise there were no gender differences in TIRA-1. In TIRA-2, there were no significant gender differences regarding pain at inclusion. However, men reported lower pain than women at all follow-ups. Women, in turn, reported significantly higher activity limitations at all time points in TIRA-2. Pain and activity limitations were significantly reduced from inclusion to the one year follow-up but remained stable thereafter.

Conclusions: Both women and men in today's early RA patient cohort report lower pain and less activity limitations at the follow ups after diagnosis of RA compared to 10 years earlier. However, both activity limitations and bodily pain are still pronounced.

BACKGROUND: The aim was to identify differences in self-reported symptoms among working (W) and non-working (NW)women, and to determine the most important biopsychosocial variables in differentiating one group from the other.

METHOD: A questionnaire was mailed to 524 members of a local chapter of the Swedish Rheumatology Association. A total of 362 persons responded (69%); 96% of which were women. Women older than 64 years and all men were excluded. The final study group consisted of 95 W, and 227 NW women. The questionnaire included data on demographics, employment, support, exercise, daily activities and symptoms. Data were analysed using univariate statistics and a partial least squares discriminant analysis (PLS-DA).

RESULTS: The results showed that 41% of the W and 42% of the NW women were/had been employed in service,care or business. The NW women reported a significantly higher severity of symptoms compared with the W women. The most important variable when differentiating the W from the NW women wassocial support from colleagues and employers.

CONCLUSION: To change prevailing attitudes and values towards persons with a work disability, a process of active intervention involving staff is needed. Educating employers as to how a disability may influence a work situation, and the importance of social support, can be improved.

Objective: Employment rates are significantly lower among individuals with arthritis compared to a general population. There is, however, limited research about how men with arthritis perceive their ability to maintain working. The aim of this study was thus to explore their perception of this.

Participants: Nine employed men with arthritis were purposively sampled.

Methods: Interviews were performed and were informed by the central concepts of the Model of Human Occupation. The Empirical Phenomenological Psychological method was modified and used to analyze and interpret collected data.

Results: The findings showed that men with arthritis perceived a desire to work, adjusted their activity pattern, were aware of their own capabilities, had good work conditions, had environmental support and used effective medication to maintain their ability to work.

Conclusions: The findings suggest that health care professionals can help men with arthritis to find strategies and a balance between recreation and work. Ultimately, this knowledge could guide health care professionals to target men needing interventions to prevent sick leave.

The aim of this study was to describe how persons with rheumatoid arthritis (RA) of working age experience and handle their fatigue in everyday life. Six focus group discussions were conducted focusing on experiences of fatigue in 25 persons with RA (19 women, 6 men), aged 20–60 years. The discussions were recorded, transcribed verbatim, and analyzed according to qualitative content analysis. The analyses resulted in four categories. (1) Perception of fatigue: Fatigue was experienced different from normal tiredness, unpredictable, and overwhelming. It was associated with negative emotions, changed self-image, and fears. Feelings of frustration and shame were central when the persons were forced to omit valued life activities. (2) Consequences due to fatigue: The fatigue caused changes in cognitive ability, ability to act, and overall activity pattern where the increased need for rest and sleep caused an imbalance in daily life. The participants struggled not to let the fatigue interfere with work. The fatigue also brought negative consequences for their significant others. (3) Communicating fatigue: Fatigue was difficult to gain understanding for, and the participants adjusted their communication accordingly; it was important to keep up appearances. During medical consultation, fatigue was perceived as a factor not given much consideration, and the participants expressed taking responsibility for managing their fatigue symptoms themselves. (4) Strategies to handle fatigue: Strategies comprised conscious self-care, mental strategies, planning, and prioritizing. Fatigue caused considerable health problems for persons with RA of working age: negative emotions, imbalance in daily life due to increased need for rest, and difficulties gaining understanding. This draws attention to the importance of developing new modes of care to address fatigue in RA. Person-centered care to improve balance in life may be one approach needing further investigations.