Linguistic validation and cultural adaptation of an English version of the Evaluation of Daily Activity Questionnaire in rheumatoid arthritis

Background: To linguistically validate and culturally adapt the Evaluation of Daily Activity Questionnaire (EDAQ) for use in rheumatoid arthritis (RA) from Swedish to British English. The EDAQ is a patient reported outcome measure of daily activity ability. It includes 11 activity domains (Eating and Drinking; Personal Care; Dressing; Bathing; Cooking; Moving Indoors; House Cleaning; Laundry; Moving and Transfers; Communication; Moving Outdoors) and was developed for use in rheumatoid arthritis (RA). Methods: The EDAQ was translated from Swedish to English using standard methods. Activity diaries, cognitive debriefing interviews and focus groups were completed with people with RA to: generate new culturally applicable items; identify important items in the Swedish version to retain in the English version; and develop the English EDAQ based on their views of content and layout. Content validity was established by linking the EDAQ to the International Classification of Functioning RA Core Set. Results: The English EDAQ translation was harmonised with the Swedish version to ensure equivalence of meaning. Sixty-one people with RA participated. 156 activities were identified from 31 activity diaries and included in a draft English EDAQ. Following interviews (n=20) and four focus groups, 138 activities were retained and three additional domains added (Gardening/Household Maintenance; Caring; and Leisure/ Social Activities). Most ICF RA Core Set activities are in the EDAQ. Conclusions: The English EDAQ is a detailed self-report measure of ability in RA. with good content validity

Disease and disability in early rheumatoid arthritis : A 3-year follow-up of women and men in the Swedish TIRA project

Rheumatoid arthritis (RA) is a chronic inflammatory disease, which often leads to disability. This study is based on three years’ follow-up data generated by patients included during 27 months 1996-1998 in a Swedish multi-centre project named ‘early interventions in rheumatoid arthritis’ (TIRA). Disease activity, disability and health-related quality of life (HRQL) were assessed by clinical and laboratory analyses, and self-reported estimations. The course during three years and relations between clinical/laboratory assessments versus HRQL were studied separately in women and men. The relation between grip force and self-reported activity limitations was analysed, and finally the use and effects of assistive devices were evaluated separately for women and men. Clinical/laboratory assessments and self-reported HRQL were substantially affected at the time for diagnosis, but the relations between clinical/laboratory assessments and self-reported HRQL were weak. Among the studied clinical/laboratory variables used here grip force, walking speed, and possibly physician’s global assessment of disease activity showed most stable relationships with the HRQL. However, the time course of clinical/laboratory and selfreported HRQL measurements followed similar patterns. Thus, most variables had improved considerably at the 3- and 6-months’ follow-ups and then remained stable but still affected over three years. An exception was the SF-36 scale ‘general health’, which was reduced to the same extent during the whole study period. As judged by the ‘Health Assessment Questionnaire’ (HAQ) and ‘Evaluation of Daily Activities Questionnaire’ (EDAQ), activity limitations were more pronounced in women than in men. By contrast, as reflected by ‘Signals of Functional Impairment’ (SOFI), men had slightly more affected function of the hands and upper extremities. Women with RA had about half of the grip force compared to male patients, which is in accordance with the differences between healthy women and men. At diagnosis, the grip force was reduced to about 30% in RA patients compared to healthy referents of the same sex. Already three months later, it improved but was still reduced to about 50% of healthy referents. Further analyses revealed that HAQ and EDAQ were strongly related to grip force independently of sex. Grip force below 114 N was found to be associated with substantial activity limitation in women as well as in men. Assistive devices (ADs) were more frequently used by women (78%) than men (54%), and were found to reduce activity limitations. The subgroups of women and men using ADs were comparable regarding disease activity and disability, and were generally more affected regarding activity limitations, compared to the subgroups that did not use ADs. Within the subgroups of patients using ADs, women and men had equivalent HAQ status and ADs were reported to reduce activity limitations in both women and men with recent-onset RA. The weak relation between clinical/laboratory assessments and self-reported HRQL supports the results by others. By means of HAQ, more pronounced activity limitations have been reported previously in women with RA, compared to male patients. In the present study, similar differences were recorded by EDAQ. Further analyses showed that reduced grip force was closely related to activity limitations independently of sex. This offers a new explanation to poor female outcome recorded by HAQ

Disease and disability

in early rheumatoid arthritis A 3-year follow-up of women and men in the Swedish TIRA projec

International Classification of Functioning, Disability and Health categories explored for self-rated participation in Swedish adolescents and adults with a mild intellectual disability

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

Dilemmas of participation in everyday life in early rheumatoid arthritis : a qualitative interview study (The Swedish TIRA Project)

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

Emotions related to participation restrictions as experienced by patients with early rheumatoid arthritis : a qualitative interview study (the Swedish TIRA project)

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.Funding Agencies|County Council of Ostergotland Research Foundations; Medical Research Council of South-East Sweden (FORSS); Norrbacka-Eugenia Foundation; Swedish Rheumatism Association</p

The role of support from significant others in the association between disease-related factors and sickness absence in early rheumatoid arthritis : a longitudinal study

Objective: The aim of this study was to analyse how support from significant others affects the associations between disease-related variables and sickness absence during the first 2 years after rheumatoid arthritis (RA) diagnosis. Method: Data from 274 people with RA (73% women) of working age (18-63 years) were retrieved from the Swedish early RA cohort TIRA-2. These data concerned disease-related variables (disease activity, activity limitations, pain intensity, and grip force), sickness absence, and perceived support from significant others. Associations of disease-related variables with sickness absence and how these associations were moderated by support from significant others were analysed using zero-inflated negative binomial regression. Results: During the 2 years after diagnosis, higher disease activity was significantly associated with increased odds of sickness absence, a connection strengthened by perceived support from family during the first year. More perceived support was also directly and significantly associated with increased odds of sickness absence during the first year. Conclusions: Support from significant others is related to sickness absence in RA, specifically during the first year after diagnosis. Although patients report high levels of support from significant others, this does not necessarily lead to more positive work outcomes. Therefore, it is important to consider other aspects of support that might influence work outcomes, e.g. type and quality of support. Future research should investigate these forms of support, and when significant others should be encouraged to support in the rehabilitation process to increase the chances of people with RA having a well-functioning and sustainable work life

Hand pains in women and men in early rheumatoid arthritis, a one year follow-up after diagnosis. The Swedish TIRA project

Purpose: This research analysed general pain intensity, hand pain at rest and hand pain during activity in women and men in early rheumatoid arhtritis (RA). Method: Out of the 454 patients that were recruited into the Swedish early RA project "TIRA" the 373 patients (67% women) that remained at 12 months follow-up are reported here. Disease activity 28 joint score (DAS-28), disability (Health Assessment Questionnaire?=?HAQ) and pain (VAS) were recorded at inclusion and after 3 (M3), 6 (M6) and 12 (M12) months. General pain, hand pain during rest, hand pain during test of grip force as assessed by Grippit™, prescribed disease-modifying anti-inflammatory drugs (DMARDs) and hand dominance were recorded. Results: DAS-28 and HAQ scores were high at inclusion and improved thereafter in both women and men. There were no significant differences between sexes at inclusion but women had higher DAS-28 and HAQ at all follow-ups. Women were more often prescribed DMARDs than were men. In both women and men all pain types were significantly lower at follow-up compared to at inclusion and women reported higher pain than men at follow-ups. The pain types differed significantly from each other at inclusion into TIRA, general pain was highest and hand pain during rest was lowest. There were no significant differences in hand pain related to hand dominance or between right and left hands. Conclusions: Disease activity, disability and pain were high at inclusion and reduced over the first year. Despite more DMARDs prescribed in women than in men, women were more affected than were men. General pain was highest and not surprisingly hand pain during active grip testing was higher than hand pain during rest that was lowest in both sexes. Although our cohort was well controlled, it was evident that hand pain remains a problem. This has implications for rehabilitation and suggests potential ongoing activity limitations that should continue to receive attention from a multi-professional team. Implications for Rehabilitation:- General pain and hand pain remain a problem in RA despite today's early intervention and effective disease control with new era biologics. - The extent of hand pain evidenced in our work gives a more detailed and comprehensive account of pain status. - Higher hand pain during active grip testing than that during rest indicates a potential relationship to ongoing activity limitation. - Hand pain assessment can help guiding multi-professional interventions directed to reduce hand pain and thereby probably reduce activity limitations

Sick Leave Before and After Diagnosis of Rheumatoid Arthritis - A Report from the Swedish TIRA Project

Objective. Our study describes sick leave during 3 years before and 3 years after diagnosis of rheumatoid arthritis (RA) in relation to referents and identifies predictors for sick leave during the third year after diagnosis of RA. Methods. One hundred twenty patients (76% women) from the Swedish early RA study TIRA were included. Disease activity and disability were registered regularly during 3 years in TIRA. Referents were matched for sex, age, and home town. Sick leave data were obtained for patients 3 years before and 3 years after diagnosis and for the referents for the corresponding 6 years. Results. No differences were seen between patients and referents regarding sick leave during the first 2 years, whereas sick leave increased in patients 6 months before diagnosis, from 30% to 53%. During the 3 years after diagnosis, sick leave among patients was rather stable, varying between 50% and 60%, even though disability pension increased and sickness benefit decreased. Sick leave before diagnosis, disability I year after diagnosis, and type of work were identified as predictors for sick leave during the third year after diagnosis. Conclusion. Not surprisingly, sick leave in patients increased the year before diagnosis. Although disease activity and disability diminished after diagnosis, the patients' sick leave remained essentially unchanged. Sick leave 3 years after diagnosis was foremost predicted by earlier sick leave, disability, and type of work. (First Release May 1 2009; J Rheumatol 2009:36:1170-9; doi:10.3899/jrheum.080523