| 1. |
- Hammond, A., et al.
(författare)
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Linguistic validation and cultural adaptation of an English version of the Evaluation of Daily Activity Questionnaire in rheumatoid arthritis
- 2014
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Ingår i: Health and Quality of Life Outcomes. - : Springer Science and Business Media LLC. - 1477-7525. ; 12:143
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Tidskriftsartikel (refereegranskat)abstract
- 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 harmonized 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.
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| 2. |
- Hesselstrand, Roger, et al.
(författare)
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Psychometric properties of the Swedish version of the Scleroderma Health Assessment Questionnaire and the Cochin Hand Function Scale in patients with systemic sclerosis.
- 2013
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Ingår i: Scandinavian Journal of Rheumatology. - : Informa UK Limited. - 1502-7732 .- 0300-9742. ; 42:4, s. 317-324
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: To translate the visual analogue scales (VAS) in the Scleroderma Health Assessment Questionnaire (SSc HAQ) and the Cochin Hand Function Scale (CHFS) and to examine the reliability and validity of the Swedish versions of the instruments. Method: The reproducibility, internal consistency, acceptability, and validity of the instruments were evaluated. Eighty-three consecutive patients participated in the evaluation of the SSc HAQ and 56 in the CHFS. Sixty-six per cent fulfilled the criteria for limited systemic sclerosis (lcSSc) and 29% for diffuse systemic sclerosis (dcSSc). The patients were assessed regarding disease parameters, hand involvement, and quality of life, the latter using the 36-item short form health survey (SF-36). Results: The reproducibility in the HAQ Disability Index (HAQ-DI), the VAS of pulmonary, digital ulcer, and overall disease severity, and in the CHFS was good (intra-class correlation coefficients, ICCs ≥ 0.75). The internal consistency was high in the HAQ-DI and the CHFS but lower in the VAS. The HAQ-DI showed higher correlations coefficients with physical-related scores in the SF-36 (r(s) = -0.600) than with mental-related dimensions (r(s) = -0.235). All VAS showed significant correlation with the item for general health (p < 0.05). The CHFS showed high correlation to hand-related items in the HAQ (r(s) = 0.858) and moderate correlation to the physical summary score in SF-36 (r(s) = -0.521). The instruments could not discriminate between lcSSc and dcSSc, although significant correlations between the CHFS and hand involvement (p < 0.05) indicate the ability of the CHFS to discriminate between mild and severe hand involvement. Conclusions: The Swedish version of the SSc HAQ and the CHFS meet the requirements of reproducibility and concurrent validity. More studies are needed to examine the capacity of these instruments to discriminate between disease severities.
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| 3. |
- Malcus Johnsson, Pia, et al.
(författare)
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Individualized outcome measures of daily activities are sensitive tools for evaluating hand surgery in rheumatic diseases.
- 2012
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Ingår i: Rheumatology (Oxford, England). - : Oxford University Press (OUP). - 1462-0332 .- 1462-0324.
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Tidskriftsartikel (refereegranskat)abstract
- Objectives. To explore the ability of six outcome measures to capture clinically important changes in patients with rheumatic diseases undergoing hand surgery and to study predictors of changes in activity performance in different patient and surgery strata.Methods. A total of 172 patients (median age 59 years, disease duration 18 years) were stratified into subgroups: diagnosis, age, general function, type of surgery. Performance of daily activities and satisfaction were assessed by the Canadian Occupational Performance Measure (COPM). Clinically important improvement was defined as a two-step improvement in COPM. Hand function was assessed by reference to grip strength (Grippit), pinch strength (pinch gauge), hand pain (visual analogue scale) and grip ability (Grip Ability Test). Responsiveness was calculated as effect size (ES) at 6-month follow-up compared with baseline.Results. Clinically important improvement was reached by 25-69% depending on outcome measure and type of surgery. Improvement was smaller in patients with multiple simultaneous procedures. Regardless of diagnosis, age, general function and type of surgery, patients improved significantly in all measures, with the largest changes in COPM(performance) and COPM(satisfaction) (ES 0.7-1.9). The ES of pain ranged from 0.2 to 0.7, Grippit from 0.1 to 0.5 and pinch gauge from 0.4 to 0.8. Hand pain was the only significant predictor of clinically important improvement of COPM(performance): odds ratio 0.71, 95% CI 0.51, 0.98 (P = 0.041).Conclusion. COPM was the most sensitive instrument to capture clinically important improvement, and hand pain was a significant predictor of improvement, irrespective of diagnosis, age, general functional level and type of surgery.
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| 4. |
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| 5. |
- Sandqvist, Gunnel, et al.
(författare)
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Managing work life with systemic sclerosis
- 2012
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Ingår i: Rheumatology. - : Oxford University Press (OUP). - 1462-0324 .- 1462-0332. ; 51:2, s. 319-323
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Tidskriftsartikel (refereegranskat)abstract
- Objective. To explore how individuals with systemic sclerosis (SSc) manage their work life. Methods. We conducted four focus group interviews which included 17 patients. The interviews were tape recorded and transcribed verbatim. The transcribed texts were analysed according to thematic content analysis. Relevant statements, that generated preliminary categories, were identified after which, themes and underlying sub-themes were generated. Results. Four themes emerged: adaptation, strategy, communication and attitude. Flexible working hours, workplace and work assignments corresponding to the individuals’ recourses, were the most important adaptation requirements for SSc patients. Reluctance to disclose their illness was the most prominent reason for not requesting adaptations. Strategies to facilitate working at home, such as receiving assistance with household chores as well as buying in cleaning services were easy to realize and saved energy for meaningful activities. The participants tried to prioritize meaningful activities rather than spending energy on unnecessary activities both at work and outside of work. Fatigue influenced activities at work but mostly outside of work and to manage their working life the participants were dependent of having time for recovery, above all rest.Conclusion. The ability to develop adaptations and strategies, to a great extent, depends on the individual’s understanding and acceptance of their disease, awareness and respect for their own needs for meaningful activities and an ability to communicate this at work and outside of work. As health professionals we should enhance the confidence of persons with SSc to strengthen their ability to bring about the necessary dialogue.
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| 6. |
- Sandqvist, Gunnel, et al.
(författare)
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Pain, fatigue and hand function closely correlated to work ability and employment status in systemic sclerosis.
- 2010
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Ingår i: Rheumatology (Oxford, England). - : Oxford University Press (OUP). - 1462-0332 .- 1462-0324. ; 49:9, s. 1739-1746
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To identify factors, individual and work related, influencing work ability, and to assess the association between work ability and employment status, activities of daily life (ADLs) and quality of life in patients with SSc. Methods: Fifty-seven consecutive patients (53 females/4 males) with SSc (47 lcSSc/10 dcSSc) were included. Median age was 58 [interquartile range (IQR) 47-62] years and disease duration 14 (9-19) years. The patients were assessed for socio-demographic characteristics, disease parameters, symptoms, work ability, empowerment and adaptations in a workplace, social support, ADLs and quality of life. Results: Work ability, assessed with the Work Ability Index (WAI) could be evaluated in 48 of 57 patients. The correlation between employment status and WAI was good (r(s) = 0.79, P < 0.001). Thirteen patients had good or excellent WAI, 15 had less good and 20 had poor WAI. There were no significant differences between subgroups of WAI and socio-demographic characteristics, disease duration or degree of skin and lung involvement. However, patients with good WAI expressed milder perceived symptoms (pain, fatigue and impaired hand function; P < 0.001). Patients with better WAI had better competence (P < 0.001), better possibility of adaptations at work (P < 0.01) and impact at work (P < 0.01) than those with poorer WAI. Conclusions: In SSc, pain, fatigue and impaired hand function have a dominant impact on the WAI. Employment interventions should include support in job adaptations as well as self-management strategies to help patients deal with pain and fatigue and to enhance the confidence to perform their work.
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| 7. |
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| 8. |
- Stamm, Tanja A., et al.
(författare)
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Concepts of functioning and health important to people with systemic sclerosis : a qualitative study in four European countries
- 2011
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Ingår i: Annals of the Rheumatic Diseases. - : BMJ. - 0003-4967 .- 1468-2060. ; 70:6, s. 1074-1079
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Tidskriftsartikel (refereegranskat)abstract
- Objective To describe the experiences of people with systemic sclerosis (SSc) in different European countries of functioning and health and to link these experiences to the WHO International Classification of Functioning, Disability and Health (ICF) to develop a common understanding from a bio-psycho-social perspective. Method A qualitative multicentre study with focus-group interviews was performed in four European countries: Austria, Romania, Sweden and Switzerland. The qualitative data analysis followed a modified form of 'meaning condensation' and the concepts that emerged in the analysis were linked to the ICF. Results 63 people with SSc participated in 13 focus groups. In total, 86 concepts were identified. 32 (37%) of these were linked to the ICF component body functions and structures, 21 (24%) to activities and participation, 26 (30%) to environmental factors, 6 (7%) to personal factors and 1 (1%) to the health condition itself. 19 concepts (22%) were identified in all four countries and included impaired hand function, household activities, paid work, drugs, climate and coldness, support from others and experiences with healthcare institutions, non-pharmacological treatment, social security and benefits. Conclusion Concepts identified in all four countries could be used for guiding clinical assessment, as well as interdisciplinary team care and rheumatological rehabilitation for patients with SSc. For a full understanding of the aspects of the disease that were most relevant to people with SSc, people with SSc from multiple countries needed to be involved.
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