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).
Structured interview study.
Fifty-five Swedish adolescents and adults with a mild intellectual disability.
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.
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.
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 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.
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.
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).
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.
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.
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.
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.
To study whether personal factors (self-efficacy and pain acceptance) mediate the relationship between pain and performance of valued life activities in persons with rheumatoid arthritis.
Persons with rheumatoid arthritis for at least four years ( n = 737; 73% women) answered a questionnaire measuring self-efficacy, pain acceptance, performance of valued life activities, and self-rated pain. Relationships among these constructs were explored using univariate and multivariate analyses. Structural equation modelling was then used to examine the mediational role of personal factors on the relationship between pain and performance of valued life activities.
A direct negative association between pain and performance of valued life activities was identified ( Beta = .34, P
To compare women and men regarding the course of disease activity and disability over 8 years from diagnosis of recent-onset rheumatoid arthritis (RA).
A total of 149 patients were followed in the Swedish TIRA study (Early Intervention in RA) for 8 years from RA diagnosis (1996-1998) regarding 28-joint count Disease Activity Score (DAS28), pain (visual analog scale), grip force, Grip Ability Test (GAT), Signals of Functional Impairment (SOFI; hand, upper/lower extremity), walking speed, activity limitation (Health Assessment Questionnaire [HAQ]), and prescribed disease-modifying antirheumatic drugs (DMARDs).
Disease activity pattern over time was similar in women and men, showing improvement during the first year and a stable situation during 6 years thereafter. However, at the 7- and 8-year followup times, deterioration was seen with a less favorable course in women. HAQ score did not differ between sexes at diagnosis, but at all followup times women had significantly higher scores than men. Women also had lower grip force and lower walking speed, but higher upper extremity mobility. DMARD prescription was similar for both sexes. Over 8 years, disease duration, sex, biologic agents, grip force, SOFI hand, and pain intensity together explained 43% of the variation in DAS28, whereas grip force, SOFI lower extremity, GAT, and pain intensity could together explain 55% of variations in HAQ score.
Disease activity was fairly well managed, but disability gradually worsened. Despite similar medication, women had more disability than men. The discrepancy between disease activity and disability indicates unmet needs for multiprofessional interventions to prevent progressing disability, and patients at risk for disability need to be identified early in the process.
The aim of this study was to identify the social and organizational requirements for a decision support system (DSS) to be implemented in a clinical rheumatology setting, utilizing data-mining techniques. Field observations and focus group interviews were used for data collection. The decision-making was found to be situated, patient-focused, and long-term in nature. At the same time, the main part of peer-to-peer communication was informal. Patient records were involved in almost every decision. The conclusion is that the main challenges, when introducing a DSS at a rheumatology unit, are adapting the system to informal communication structures and integrating it with patient records. Considering incentive structures, understanding workflow and incorporating awareness are relevant issues when addressing these issues in future studies.
The aim of this study was to describe experiences of pain and its relationship to daily activities in people with rheumatoid arthritis (RA).
Seven semi-structured focus group discussions were conducted with 33 men and women of different ages with RA. Data were analysed with content analysis.
Pain affected everyday life and may be a barrier to perform valued activities. Regarding the impact of pain on participation and independence, personal factors and the social environment were found to be important. It could be a struggle to find the right activity balance, since it was easy to be overactive, triggering subsequent elevation of pain levels. However, the participants also described activities as a mediator of pain and a distraction from it.
The relationship between pain and daily activities in RA was complex. Pain as an impairment was expressed to be related to activity limitations and participation restrictions, as well as to contextual factors. These findings highlight the clinical importance of paying attention to the complexity of pain and its relation to daily activities and participation.
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.
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.
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.
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.