Objective: The objective was to create a linguistically and culturally validated Swedish version of the Valued Life Activities scale. The aim was also to describe its content and concurrent validity and its internal consistency in persons with rheumatoid arthritis. Methods: The Valued Life Activities scale was translated to Swedish and culturally adapted. In order to describe the content validity, both the Swedish and original Valued Life Activities scale were linked to the International Classification of Functioning, Disability and Health. The concurrent validity and internal consistency were evaluated in 737 patients with rheumatoid arthritis. To establish concurrent validity, the scale was correlated to disease activity, activity limitations, and life satisfaction. Internal consistency was assessed with Cronbach’s alpha. Results: The equivalence of meaning between the Swedish and the original Valued Life Activities scale was ensured by harmonization review. Content validity was high when linked to the International Classification of Functioning, Disability and Health. Concurrent validity showed a strong correlation with the activity limitations (r = 0.87), moderate with life satisfaction (r = –0.61), and weak with disease activity (r = 0.38). Internal consistency was excellent (Cronbach’s alpha = 0.97). Conclusions: The Swedish Valued Life Activities scale has been tested in a large and well-characterized sample and found to be a linguistically valid and culturally adapted self-reported measure of participation. Content validity of the Valued Life Activities scale was excellent, concurrent validity strong, and the internal consistency excellent. Since both individual preferences and International Classification of Functioning, Disability and Health concepts of disability are taken into account, the Swedish Valued Life Activities scale appears to be a promising new scale addressing important aspects of participation.

INTRODUCTION:Interdisciplinary differences regarding understanding the International Classification of Functioning, Disability and Health (ICF) concepts activity/participation may hinder its unifying purpose. In the ICF model, functioning (and disability) is described as a tripartite concept: 1) Body structures/functions, 2) Activities, and 3) Participation. Activities refer to an individual perspective on disability that does not tally with the basic structure of social models.OBJECTIVE:To review how activity and participation are actually used in studies of intellectual disability (ID).CONCLUSION:Based on 16 papers, four different usages of activity/participation were found. 1) Theoretical reference to tripartite ICF concept with attempts to use it. 2) Theoretical reference to tripartite ICF concept without actual use of activities. 3) "Atheoretical" approach with implicit focus on participation. 4) Theoretical reference to bipartite concept with corresponding use of terms. The highlighted studies have in common a focus on participation. However, the usage of the term "activity" differs both within and between studies. Such terminology will probably confuse interdisciplinary communication rather than facilitating it. Also, the use of an explicit underlying theory differs, from references to a tripartite to references to a bipartite concept of disability. This paper is focused on ID, but the discussed principles regarding the ICF and interdisciplinary disability theory are applicable to other diagnostic groups within rehabilitation practices.

Background Rheumatoid arthritis (RA) is related to reduced health related quality of life (HRQL) despite early instituted disease modifying anti rheumatic drugs (DMARD:s) during the 19909s (1). Objectives To analyse differences regarding HRQL in women and men that were diagnosed during the 20009s compared to patients diagnosed ten years earlier before the introduction of biological agents. Methods The 276 patients (69% women) still participating at the three years follow up in the “pre biological” early RA-cohort (TIRA-1, included 1996-1998) constitutes the study group together with the corresponding 373 patients (67% women) in the second cohort (TIRA-2, 2005-2008) included after introduction of biological agents. Disease activity score (DAS 28) and DMARD:s were registered and HRQL was reported in Short Form 36 (SF-36, score 0 to 100) in the subscales Physical Functioning (PF), Role Physical (RP), Bodily Pain (BP), General Health (GH), Vitality (VT), Social Functioning (SF), Role Emotional (RE) and Mental Health (MH) at inclusion (Y0) and after one year (Y1), 2 (Y2), and 3 years (Y3). The study protocol was approved by the local ethics committee in Linköping, Sweden. The cohorts showed no significant differences (P≤0,001) in DAS28 at inclusion but more patients were prescribed DMARD:s, including biological agents, in TIRA2 at all occasions. DAS did not differ between sexes in TIRA-1, but men had lower DAS than women at all occasions in TIRA-2. Results Differences between cohorts: for both sexes there were no differences in SF-36 at inclusion between cohorts, but at the follow-ups most scales showed higher HRQL in women and men in TIRA-2 (T1) compared to in TIRA-1 (T1) except for MH and SF which did not differ between cohorts. The mean scores at Y3 for women in T1/T2 were; PF 58/69; RP 52/62; BP 52/62; GH 51/63; VT 52/57; SF 79/81; RE 69/7; MH 74/76 and the corresponding for men were PF 66/75; RP 53/64; BP 52/69; GH 55/63; VT 58/66; SF 84/91; RE75/80; MH 79/84. Differences within cohorts: men had higher HRQL than women at some occasions in TIRA-1 (T1) (Y0 =MH; Y1=GH, MH, SF; Y3=MH, PF) and in some occasions in TIRA-2 (T1) (Y0=PF; Y1=BP, PF, VT; Y2=BP, MH, PF, VT; Y3=BP, MH, PF, SF, VT). Course: from Y0 to the follow ups, HRQL increased in all scales in both cohorts in both sexes except for GH in TIRA 2 that was stable over time. Conclusions More DMARD:s is prescribed and HRQL has increased in today9s patients compared to 10 years earlier, most evident for physical aspects. Our results indicate continuing needs for multi professional interventions, especially for women, in addition to DMARD:s. References Thyberg I, Skogh T, Hass UA, Gerdle B. J Rehabil Med. Recent-onset rheumatoid arthritis: a 1-year observational study of correlations between health-related quality of life and clinical/laboratory data. J Rehabil Med. 2005;37:159-65 Disclosure of Interest None declared

Abstract Purpose: To explore the experiences of today's patients with early rheumatoid arthritis (RA) with respect to dilemmas of everyday life, especially regarding patterns of participation restrictions in valued life activities. Methods: A total of 48 patients, aged 20–63, three years post-RA diagnosis were interviewed using the Critical Incident Technique. Transcribed interviews were condensed into meaningful units describing actions/situations. These descriptions were linked to ICF participation codes according to the International Classification of Functioning, Disability and Health (ICF) linking rules. Results: Dilemmas in everyday life were experienced in domestic life, interpersonal interactions and relationships, community, social and civic life. Most dilemmas were experienced in domestic life, including participation restrictions in, e.g. gardening, repairing houses, shovelling snow, watering pot plants, sewing or walking the dog. Also many dilemmas were experienced related to recreation and leisure within the domain community, social and civic life. The different dilemmas were often related to each other. For instance, dilemmas related to community life were combined with dilemmas within mobility, such as lifting and carrying objects. Conclusions: Participation restrictions in today’s RA patients are complex. Our results underline that the health care needs to be aware of the patients’ own preferences and goals to support the early multi-professional interventions in clinical practice. Implications of Rehabilitation Today’s rheumatoid arthritis (RA) patients experience participation restrictions in activities not included in International Classification of Functioning, Disability and Health (ICF) core set for RA or in traditionally questionnaires with predefined activities. The health care need to be aware of the patients’ own preferences and goals to meet the individual needs and optimize the rehabilitation in early RA in clinical practice.

Background In spite of early interventions and advancements in medication disability and restricted work capacity is closely related to rheumatoid arthritis (RA). Around 1/3 of diagnosed patients are men, however few studies describe men9s need and experiences of living with RA [1]. Objectives To explore male strategies of handling participating restriction in everyday life. Methods In this study 25 men with early RA from the TIRA2 cohort [2], age 20 – 63, were interviewed about participation restrictions with Critical Incident Technique [3]. Transcribed interviews were synthesized into dilemmas and linked to ICF participation [4] codes and the strategies in handling these dilemmas were analyzed and categorized using content analysis [5]. Results The men described four types of strategies of handling participating restriction in everyday life. Resilience strategies; to find enjoyments, develop self-trust, and a new body-knowledge. Daily routine strategies; use more time on each task and rest in between activities, adjust medication to activity, adjust movements finding new ways to conduct work tasks and physical training. Avoidance strategies; avoid alcohol, social contacts after work, inform of RA and sometimes medicine. Action strategies; continue activities, attend activities as a spectator instead of being an active participant, go home if needed, say no, ask for help, and talk about RA. Acceptance strategies; accept pain, accept less work pace, accept less endurance and fewer activities. Conclusions Men described dilemmas in everyday life due to RA, but not all experienced being restricted in life they rather expressed reorganizing their everyday lives. References Shuttleworth RP (2004). Disabled masculinity; Expanding the masculine repertoire. In Smith BG, Hutchinson B (Eds). Gendering disability, New Brunswick, NJ; Rutgers University Press. Björk M, Thyberg I, Rikner K, Balogh I, Gerdle B. Sick leave before and after diagnosis of rheumatoid arthritis: a report from the Swedish TIRA project. J Rheumatol 2009;36:1170-1179. Flanagan, C (1954). The critical incident technique. Psychological Bulletin, 51: p. 327-358. Cieza A, Geyh S, Chatterji S, Kostanjsek N, Ustun B, Stucki G ICF linking rules: an update based on lessons learned. J Rehabil Med. 2005;37:212-8. Sverker A, Thyberg I, Östlund G, Valtersson E, Thyberg M. (2013). Participation in work in early rheumatoid arthritis: A qualitative interview study interpreted in terms of the ICF. Disability & Rehabilitation May (3); ISSN1464-5165 Disclosure of Interest None declared DOI 10.1136/annrheumdis-2014-eular.3717

PURPOSE:To argue for and propose bipartite concepts of functioning and disability, to tally with the structure of the ICF classification list, concepts of social models and clinical needs.METHOD:The ICF concepts are discussed in relation to the history of ideas regarding disability concepts and the needs for such concepts in interdisciplinary rehabilitation.RESULTS:Bipartite concepts are presented; they refer to actual functioning, simply body functions/structures and participation, including functioning in standardized environments. Participation refers to actually performed "activities", with "activities" simply denoting things that people may do. Bipartite concepts are congruent with the ICF classification and the structure of social models of disability, suitable for clinical and interdisciplinary use and easy to understand. The issue of standardized environments represents a methodological issue rather than the conceptual issue of defining functioning and disability. An individual perspective on activity and activity limitations, i.e. the middle part of the tripartite ICF concept, is somewhat similar to concepts of traditional language that were regarded as too generalizing already in 1912, when the interactional concept of "disability in a social sense" was introduced in rehabilitation practices.CONCLUSION:Bipartite concepts of functioning and disability are recommended for interdisciplinary use of the ICF.IMPLICATIONS FOR REHABILITATION:The ICF classification is useful, but the ICF concept of activities in an individual perspective is confusing. We suggest a use of the term "activities" simply to denote things that people may do and "participation" to denote actually performed activities. Estimations of ability should be explicit about how they are related to environmental factors.

Dilemmas of participation in everyday life in early rheumatoid arthritis (RA) : A qualitative interview study (the Swedish TIRA study)

Purpose: To explore what work-related dilemmas are experienced by patients with early rheumatoid arthritis (RA), according to their own descriptions, and to interpret this in terms of participation categories of the International Classification of Functioning, Disability and Health (ICF). Method: In 48 patients with early RA, qualitative interviews were analyzed, followed by linking of concepts to the activity/participation component of the ICF and interpretation of general themes. Results: Work-related dilemmas represented different societal perspectives on work related to acquiring, keeping and terminating a job, self-employment, part-time, fulltime and non-remunerative employment. Dilemmas also represented participation priorities in economic self-sufficiency, self-care such as health care, and avoiding social relationships and recreation in favor of work. Leisure time was influenced because efforts of working took energy and time of day-to-day procedures. Embedded actions in work-related dilemmas were carrying out daily routine, mobility including using transportation, self-care, domestic life and social interaction. Conclusion: The general themes societal perspectives, participation priorities and embedded actions, with the included ICF categories that are described in detail according to the experiences of the patients, can support clinical reasoning and research on quantitative relations to disease activity, body functions, ability and contextual factors.

Background Disability is an important outcome in rheumatoid arthritis (RA). The Valued Life Activity scale (VLA) comprises a wide range of life activities deemed to be important by the individual, ranging from self-care to leisure activities. Thereby VLA takes the patients´ priorities into account and includes activities in which disability may occur early. Objectives Translation, cultural adaptation including linkage to the International Classification of Functioning, Disability and Health (ICF) and psychometric testing of the VLA scale in Swedish patients with RA. Methods The VLA, developed by Katz et al (1) was translated and culturally adapted to a Swedish version, the VLA-swe. As a part of this, both the VLA and VLA-swe were linked to the ICF according to linking rules (2). 737 RA patients(73% women)aged 18 - 80 (mean age 62 years) were recruited from the Swedish Rheumatology Quality Registry (SRQ). The average disease duration was 16 years. Data for disease activity (DAS28), activity limitations (HAQ) and life satisfaction (LiSat11) were registered and patients completed the VLA-swe. Internal consistency was assessed with Cronbach’s alpha and item statistics. To establish construct validity VLA-swe was correlated to DAS28, HAQ and LiSat11. Results The conceptual similarity between the VLA-swe and the original VLA was high when linked to the ICF: in 29 of the 33 items the ICF codes tallied exactly with each other and the remaining differed only slightly. Each of the 9 ICF activity/participation domains was represented in one or more items. The internal consistency was excellent for the VLA-swe (0.97) and alpha coefficients did not improve after omitting any of the 33 items. The correlations between the single items and the total VLA-swe score varied between r=0.57 and r=0.84. Scores of the VLA-swe correlated strongly with the HAQ (r=0.87), moderately with the LiSat11 (r=-0.61) and weakly with the DAS28 (r=0.38), as expected. Conclusions The VLA-swe is culturally adapted and validated, and addresses a broad range of ICF activity/participation domains. Since both the patients´ preferences and ICF concepts of disability are taken into account, it is a useful complement to traditional measures, such as the HAQ, which measure activity limitations only. References Katz P, Morris A, Yelin E. Prevalence and predictors of disability in valued life activities among individuals with rheumatoid arthritis. Ann Rheum Dis 2006;65:763e9. Cieza A, Geyh S, Chatterji S, Kostanjsek N, Ustun B, Stucki G. ICF linking rules: an update based on lessons learned. J Rehabil Med 2005;37:212-218. Disclosure of Interest None Declared

PURPOSE:This study explored a possibility to assess the concepts of participation and participation restrictions in the International Classification of Functioning, Disability and Health (ICF) by combining self-ratings of the perceived importance with the actual performance of different everyday activities in people with a mild intellectual disability. METHOD:Structured interviews regarding 68 items from the ICF activity/participation domain were conducted (n = 69). The items were ranked by perceived importance, performance and by combined measures. Furthermore, the measures were related to a single question about subjective general well-being. RESULTS:Rankings of performance highlighted about the same items as "important participation", while rankings of low performance addressed quite different items compared with "important participation restriction". Significant correlations were found between subjective general well-being and high performance (r = 0.56), high performance/high importance (important participation) (r = 0.56), low performance (r = -0.56) and low performance/high importance (important participation restriction; r = -0.55). CONCLUSIONS:The results support the clinical relevance of the ICF and the studied selection of 68 items. Although performance only may sometimes be a relevant aspect, knowledge about the relationship between the perceived importance and the actual performance is essential for clinical interventions and for research aiming to understand specific needs regarding participation. IMPLICATIONS FOR REHABILITATION:The concepts of participation and participation restriction are highly relevant in people with a mild intellectual disability. Self-rated performance might be sufficient to assess participation at a group level. In clinical practices, the relationship between the perceived importance and the actual performance of an activity is essential to assess.

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.

Objective: To explore internal consistency and correlations between perceived ability, performance and perceived importance in a preliminary selection of self-reported items representing the activity/participation component of the International Classification of Functioning, Disability and Health (ICF).Design: Structured interview study.Subjects: Fifty-five Swedish adolescents and adults with a mild intellectual disability.Methods: Questions about perceived ability, performance and perceived importance were asked on the basis of a 3-grade Likert-scale regarding each of 68 items representing the 9 ICF domains of activity/participation.Results: Internal consistency for perceived ability (Cronbach's alpha for all 68 items): 0.95 (values for each domain varied between 0.57 and 0.85), for performance: 0.86 (between 0.27 and 0.66), for perceived importance: 0.84 (between 0.27 and 0.68).Seventy-two percent of the items showed correlations > 0.5 (mean = 0.59) for performance vs perceived importance, 41% > 0.5 (mean = 0.47) for perceived ability vs performance and 12% > 0.5 (mean = 0.28) for perceived ability vs perceived importance.Conclusion: Measures of performance and perceived importance may have to be based primarily on their estimated clinical relevance for describing aspects of the ICF participation concept.With a clinimetric approach, parts of the studied items and domains may be used to investigate factors related to different patterns and levels of participation, and outcomes of rehabilitation.

This study explores the potential of the health assessment questionnaire (HAQ) score as a clinical indicator that can be used to suggest comprehensive multidisciplinary assessments, by relating it to more general aspects of disability. In a cohort of 132 patients with early RA (mean age 55, 68% women), 28 joint count Disease Activity Scores (DAS-28), HAQ, and Short Form 36 (SF-36) scores were registered at annual follow-up visits 8 years after diagnosis. The patients were tentatively sub-grouped into a high-HAQ group (HAQ ≥ 1 at the 8-year follow-up) and a low-HAQ group. The high-HAQ group, comprising 36% of the cohort, had a higher mean HAQ score at inclusion and beyond at all visits compared to the low-HAQ group, and 24% of all individual patients in the high-HAQ group had a HAQ score ≥ 1 at inclusion. Although the DAS-28 improved in both groups, patients in the high-HAQ group also had significantly more persistent disability according to the SF-36: five scales at each follow-up visit and all eight scales at the majority of the visits. Individual RA patients with HAQ ≥ 1 probably have considerable persistent disabilities according to the SF-36. The HAQ score could be used as a clinical indicator suggesting comprehensive multidisciplinary assessments of the components of disability and corresponding interventions, in addition to the established use of HAQ at group levels and in parallel with the medication strategy based on DAS-28.

Background: Early instituted disease modifying anti rheumatic drugs (DMARD:s) leads to reduced disease activity. Critical levels of disease activity measured with Disease Activity Score 28 joint co ...

This article suggests that definitions of disability exphasizing individuals and social context existed much earlier than is most often claimed