Mikael Thyberg

Factors related to fatigue in women and men with early rheumatoid arthritis: the Swedish TIRA study.

OBJECTIVE To study whether there are differences between women and men with regard to the reported level of fatigue, to explore the strength of the relations between fatigue and disease activity, pain, sleep disturbance, mental health, and activity limitation in early rheumatoid arthritis, and to explore the consistency of such findings. DESIGN Analyses and comparisons of cross-sectional data. SUBJECTS Two hundred and seventy-six patients, 191 women and 85 men, with early rheumatoid arthritis were included. METHODS Patients were examined with respect to 28-joint count disease activity score, and disability variables reflecting pain, sleep disturbance, fatigue, mental health, and activity limitation, at follow-ups at 1, 2 and 3 years after diagnosis. RESULTS Women reported somewhat more fatigue than men. Fatigue was closely and rather consistently related to disease activity, pain and activity limitation, and also to mental health and sleep disturbance. CONCLUSION Although this study does not permit conclusions to be drawn about causal directions, statistical relationships may be related to clinical conceptions about causation: when disease activity can be significantly reduced by pharmacological treatment this may have a positive effect on fatigue. Specific treatment with respect to the mentioned disability aspects that are related to fatigue is also a clinically reasonable strategy.

Wheelchair seating intervention. Results from a client-centred approach

Purpose : The aim of this study was to analyse the effects of wheelchair intervention from a client-centred perspective. Method : Results from 38 consecutive active wheelchair users visiting the wheelchair-seating department at the University Hospital in Linköping, Sweden, were analysed and described. All clients had defined problems related to wheelchair seating. Back pain was estimated before intervention and at follow-up, using a Visual Analogue Scale. The effect of intervention on different aspects of wheelchair functionality, seating and occupational performance was estimated by the clients at follow-up. Results : Two initial main problem areas were identified among the group; seating discomfort (87% ) and back pain (63% ). Back pain was significantly reduced at follow-up (p<0.001). Problems initially defined by the clients, e.g. seating discomfort, were affected positively, in 79% of all clients, as estimated by the clients at follow-up. No significant correlation was found between the initial cause of intervention or the highest ranked wheelchair functionality aspect and final acceptance of intervention. Conclusions : The results from this study confirm the possibility of reducing, or even eliminating, common secondary problems such as back pain and discomfort, related to wheelchair seating by individually adjusted measures. Further research and development in this field is both necessary and cost-effective.

Back pain and spinal deformity : common among wheelchair users with spinal cord injuries

During the past 15 years, wheelchair development has focused on driving properties. Back pain, however, is a problem among wheelchair users. Thirty-one wheelchair users, mean age 46 years (range 21–79), (3 women and 28 men), with spinal cord injuries were studied with regard to back pain and spinal deformity. Sixteen subjects had tetraplegia and 15 had paraplegia; median time since injury was 11 years (range 2–37). Pain was assessed using pain drawings, visual analogue scale and questionnaire. Spinal deformity was examined using X-ray, weight distribution, 3D magnetic motion tracker, photographs and physical examination. Some degree of back pain was found in 84% of the patients. Most patients could modify their pain by changing their sitting posture or by rest in bed, and had some kind of spinal deformity that might be related to neurological injury and sitting posture. Further wheelchair research considering the ergonomics of both driving and sitting seems important.

Participation in work in early rheumatoid arthritis: a qualitative interview study interpreted in terms of the ICF

Abstract 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, full-time 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. Implications for Rehabilitation In early rheumatoid arthritis, keeping a job is complex; patients and practitioners need to know and handle the perspectives of, e.g. employers and social insurance agents. Participation in work is an issue of prioritizing against, e.g. maintaining ones health and social relationships. Rehabilitation practitioners need to analyze what actions are embedded in a work situation.

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 (Cronbachs 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.

Survival with pain: an eight-year follow-up of war-wounded refugees.

The aim of this study was to investigate the nature of chronic pain in male war‐wounded refugees and to examine the relationship between chronic pain and psychiatric symptoms. A culturally heterogeneous group of 44 war‐wounded refugees were investigated during hospitalization, shortly after arrival, and followed up after two years. This study is an additional follow‐up after eight years. The data collection methods used were structured interviews and physical examination. The measures of outcome were: Visual Analogue Scale (VAS) grading of pain; clinical categorization of pain into nociceptive or neurogenic; Hopkins Symptom Check List (HSCL‐25); Post Traumatic Symptom Scale (PTSS‐10). Chronic pain was found in 32 (73%) out of 44 subjects. The pain was purely nociceptive and neurogenic in 53% and 25%, respectively. The frequency of psychiatric symptoms was significantly related to the mean intensity of pain. War‐wounded refugees display psychiatric symptoms and chronic pain in a complex pattern. Further research is needed as a basis for pain rehabilitation programmes suitable for this group.

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 todays 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.

Important aspects of participation and participation restrictions in people with a mild intellectual disability

Abstract 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.

Problematic aspects of faecal incontinence according to the experience of adults with spina bifida.

OBJECTIVE To describe problematic aspects of faecal incontinence according to the experience of adults with spina bifida. DESIGN Qualitative interview study. SUBJECTS Eleven adults with spina bifida and bowel problems. METHOD Semi-structured open-ended interviews and qualitative analysis. RESULTS Problematic aspects were related to participation in terms of time consumption, communication, social isolation, love and sexuality, and accessibility. Also, to a sense of helplessness in terms of panic and worry, to a sense of shame in terms of impurity, social acceptance and self-image, and to bowel function in terms of decisions about colostomy, voluntary constipation, and changing patterns. CONCLUSION The results reveal aspects relevant to supporting clinical practice and suggesting issues for questionnaire studies.

War-wounded refugees: the types of injury and influence of disability on well-being and social integration.

The aim of this study is to describe the war injuries and investigate the influence of physical disability on well-being and social integration in a group of war-wounded refugees after two years in Sweden. A culturally heterogenous sample of 54 war-wounded refugees was investigated during hospitalization shortly after arrival, and after two years. Quantitative data were covered by physical examinations, interviews and questionnaires. In addition, qualitative data were collected within semi-structured interviews on both occasions. The major types of war injuries were: fractures (22%), traumatic amputations (17%), spinal cord injuries (17%), nerve injuries (11%), combinations of fractures and nerve injuries (9%), bilateral eye injuries (9%), brain injuries (7%), other injuries (7%). Regarding the type of injuries and medical complications, the group studied was representative of small unit operations of war with low access to early medical care. The degree of physical disability was not a salient factor for well-being and social integration after two years in Sweden. The losses and desires to be repatriated were apparent from the qualitative findings, as exemplified by three case reports. The findings of this study are in accordance with previous research on refugees and war-injured ex-combatants, but further multidisciplinary research is needed. The results also imply that resettlement countries should pay continuous attention to the broad needs of their war-wounded refugees.