Concepts of functioning and health important to people with systemic sclerosis: a qualitative study in four European countries

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

Common measure of quality of life for people with systemic sclerosis across seven European countries: A cross-sectional study

© Article author(s) (or their employer(s) unless otherwise stated in the text of the article) 2018. All rights reserved. Objectives the aim of this study was to adapt the Systemic Sclerosis Quality of Life Questionnaire (SScQoL) into six European cultures and validate it as a common measure of quality of life in systemic sclerosis (SSc). Methods this was a seven-country (Germany, France, Italy, Poland, Spain, Sweden and UK) cross-sectional study. A forward–backward translation process was used to adapt the English SScQoL into target languages. SScQoL was completed by patients with SSc, then data were validated against the rasch model. to correct local response dependency, items were grouped into the following subscales: function, emotion, sleep, social and pain and reanalysed for fit to the model, unidimensionality and cross-cultural equivalence. Results the adaptation of the SScQoL was seamless in all countries except Germany. Cross-cultural validation included 1080 patients with a mean age 58.0 years (Sd 13.9) and 87% were women. Local dependency was evident in individual country data. Grouping items into testlets corrected the local dependency in most country specific data. Fit to the model, reliability and unidimensionality was achieved in six-country data after cross-cultural adjustment for Italy in the social subscale. the SScQoL was then calibrated into an interval level scale. Conclusion the individual SScQoL items have translated well into five languages and overall, the scale maintained its construct validity, working well as a five-subscale questionnaire. Measures of quality of life in SSc can be directly compared across five countries (France, Poland Spain, Sweden and UK). data from Italy are also comparable with the other five countries although require an adjustment

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

Measures and time points relevant for post-surgical follow-up in patients with inflammatory arthritis: a pilot study

<p>Abstract</p> <p>Background</p> <p>Rheumatic diseases commonly affect joints and other structures in the hand. Surgery is a traditional way to treat hand problems in inflammatory rheumatic diseases with the purposes of pain relief, restore function and prevent progression. There are numerous measures to choose from, and a combination of outcome measures is recommended. This study evaluated if instruments commonly used in rheumatologic clinical practice are suitable to measure outcome of hand surgery and to identify time points relevant for follow-up.</p> <p>Methods</p> <p>Thirty-one patients (median age 56 years, median disease duration 15 years) with inflammatory rheumatic disease and need for post-surgical occupational therapy intervention formed this pilot study group.</p> <p>Hand function was assessed regarding grip strength (Grippit), pain (VAS), range of motion (ROM) (Signals of Functional Impairment (SOFI)) and grip ability (Grip Ability Test (GAT)). Activities of daily life (ADL) were assessed by means of Disabilities of the Arm, Shoulder and Hand Outcome (DASH) and Canadian Occupational Performance Measure (COPM). The instruments were evaluated by responsiveness and feasibility; follow-up points were 0, 3, 6 and 12 months.</p> <p>Results</p> <p>All instruments showed significant change at one or more follow-up points. Satisfaction with activities (COPM) showed the best responsiveness (SMR>0.8), while ROM measured with SOFI had low responsiveness at most follow-up time points. The responsiveness of the instruments was stable between 6 and 12 month follow-up which imply that 6 month is an appropriate time for evaluating short-term effect of hand surgery in rheumatic diseases.</p> <p>Conclusion</p> <p>We suggest a core set of instruments measuring pain, grip strength, grip ability, perceived symptoms and self-defined daily activities. This study has shown that VAS pain, the Grippit instrument, GAT, DASH symptom scale and COPM are suitable outcome instruments for hand surgery, while SOFI may be a more insensitive test. However, the feasibility of this protocol in clinical practice awaits prospective studies.</p

Hand function, Everyday Occupations and Wellbeing in Individuals with Systemic Sclerosis

Systemic sclerosis (scleroderma) is a connective tissue disease which, in various ways, influences an individual’s ability to participate in everyday occupations. The general objective of this work was to elucidate the consequences of scleroderma with respect to hand function, everyday occupations and wellbeing, in order to provide a knowledge base suitable for occupational therapy interventions. The thesis is based on five describing studies, including a total of 110 individuals with scleroderma, mostly women. Standardised tests of hand function, questions on symptoms, and questionnaires and semi-structured interviews were used to assess occupational performance and wellbeing. The following results were obtained. Functioning of the hand varied considerably from normal to severe impairment. Mobility in the hands was above all impaired concerning finger flexion and extension, and grip force was reduced to about 50% of healthy persons. The hand function test, Hand Mobility in Scleroderma (HAMIS) proved to be a valid and reliable screening test of hand mobility in scleroderma. Many occupations requiring hand function were difficult to perform, and short disease duration, decreased hand function, stiffness, Raynaud’s phenomenon, shortness of breath, as well as fatigue and pain seemed to have great influence on ADL and occupational performance. Loss of occupations, dissatisfaction with leisure, perceived fatigue, shortness of breath, and pain were risk factors for decreased wellbeing. There were indications that intervention with paraffin bath and hand exercise improved finger mobility and grip force, and ADL difficulties decreased significantly when using assistive devices or alternative working methods compared with performing the activities in a normal manner. In occupational therapy treatment it is important to elucidate a person’s skills and capacities, especially within leisure occupations. Interventions should focus on supporting good hand function and helping the individuals maintain their ability to perform valued occupations and to establish coping mechanisms in the early phase of the disease

Daily occupations - performance, satisfaction and time use, and relations with well-being in women with limited systemic sclerosis.

Purpose. To describe activity level, operationalized as ADL capacity and performance of occupations, and occupational balance, operationalized as time use and satisfaction with occupations, in women with limited systemic sclerosis, and to investigate the relationship between these occupational factors and disease characteristics, demographic variables and well-being. Method. Forty-four women of working age and with long-standing limited systemic sclerosis were assessed regarding occupational factors, clinical variables, sociodemographic characteristics and well-being. Results. The women exhibited a generally high activity level and were satisfied with their daily occupations. More time spent working was related to spending less time on household chores, greater satisfaction with occupations in general and greater well-being. Symptoms such as breathlessness, fatigue and pain, influenced ADL capacity and satisfaction with occupations negatively. Conclusions. Work seems to be an important factor for satisfaction with occupations and well-being. This emphasizes the importance of investigating risk factors for work disability in people with systemic sclerosis, and of developing strategies for people with a work disability to enable them to maintain routines and a structured day. The findings also demonstrate the importance of reinforcing performance in satisfying occupations in order to maintain a feeling of well-being

Validity of HAMIS: a test of hand mobility in scleroderma.

Objective Hand Mobility in Scleroderma (HAMIS) is a new hand function test developed for adults who have systemic sclerosis. HAMIS consists of 9 items designed to measure all movements assessed in an ordinary range of motion (ROM)-measured hand test. The aim of this study was to examine the reliability of the test. Methods Two observers (one occupational therapist and one physiotherapist) performed the assessments independently of each other on 30 adult subjects. There were 25 women and 5 men in the sample (mean age 53 years, average time since diagnosis 4 years). Subjects were tested twice by each rater. Results Internal consistency ranged from 0.80 to 0.85 (Cronbach's alpha). Agreement between the two observers was good for all items (estimated kappa 0.52 to 1.00). The agreement between the observers' first and second assessments was moderate to very good for most items (estimated kappa 0.48 to 1.00), but not for the assessment of supination (estimated kappa 0.25 to 0.59). Conclusion HAMIS is a reliable instrument for evaluation of hand function on scleroderma patients