Gunnel Sandqvist

Daily activities and hand function in women with scleroderma.

Objective: To give a detailed description of hand function and the ability to perform daily activities among patients with systemic sclerosis. Methods: Thirty patients with scleroderma answered a self‐administered activities of daily living (ADL) questionnaire. Hand function was estimated with respect to hand mobility, dexterity, and grip force. Perceived symptoms were reported on a visual analogue scale (VAS), and skin thickness was assessed by means of the modified Rodnan skin score. Results: Finger flexion and extension were the most impaired aspects of hand mobility. Dexterity was on average reduced to 68–80%, and grip force to 46–65% compared with values for healthy persons. The predominant self‐perceived problem was Raynauds phenomenon, whereas pitting scars/ulcers were perceived as the least problem. Activities building on hand and arm function were harder to perform than activities depending on lower limb function. Raynauds phenomenon, stiffness, grip force, and dexterity were factors with the strongest associations with ADL difficulties. Assistive devices and alternative working methods improved ADL ability. Conclusion: Impaired hand function was related to ADL difficulties and the use of assistive devices improved ADL. This emphasizes the importance of treatments that improve hand function and of testing ergonomic tools.

Validity of HAMIS: a test of hand mobility in scleroderma

OBJECTIVE Hand Mobility in Scleroderma (HAMIS) is a hand function test for persons who have systemic sclerosis (scleroderma). The purpose of HAMIS is to obtain an estimation of the hand mobility that is precise enough to detect limitation of motion at the same time as it indicates the ability to use the hand in daily occupations. The aim of this study was to test psychometric properties of the HAMIS, and the following aspects of HAMIS were examined: 1) the applicability of HAMIS, 2) concurrent validity, and 3) discriminating ability. METHODS Forty-five patients with scleroderma were assessed for range of motion (ROM), HAMIS, and skin thickness. In addition, 15 healthy individuals completed HAMIS. RESULTS The applicability of HAMIS was good for items assessing finger and thumb mobility and moderate for items assessing mobility of the wrist and the forearm. The relationships of HAMIS to ROM and skin score were statistically significant for all items except for pronation and supination of the forearm. There were also statistically significant differences between the patients and the healthy individuals for all items except these two. CONCLUSION HAMIS has a demonstrated concurrent validity compared with ROM and skin score, and it showed a good ability to discriminate between healthy individuals and persons with scleroderma, although a lack of variation in the items measuring pronation and supination inferred worse psychometric properties for these two items.

Evaluation of paraffin bath treatment in patients with systemic sclerosis

Objective: To investigate the effects of treatment with paraffin bath in patients with systemic sclerosis (scleroderma). Methods: In 17 patients with scleroderma one hand was treated daily with paraffin bath in combination with hand exercise. The other hand was treated with exercise only and was considered a control. Hand function was estimated before treatment and after 1 month of treatment, concerning hand mobility and grip force, and perceived pain, stiffness and skin elasticity. Results: At the follow-up, finger flexion and extension, thumb abduction, volar flexion in the wrist, and perceived stiffness and skin elasticity had improved significantly in the paraffin-treated hand compared with the baseline values. The improved hand function was independent of skin score and disease duration. Improvements in function were significantly greater in the hand which was treated with paraffin bath and exercise than in the hand treated with exercise only concerning extension deficit, perceived stiffness and skin elasticity. Conclusions: In this pilot study hand exercise in combination with paraffin bath seemed to improve mobility, perceived stiffness and skin elasticity. However, further studies with larger sample size are needed to attain more reliable results of the effect of paraffin bath treatment in patients with scleroderma.

Pain, fatigue and hand function closely correlated to work ability and employment status in systemic sclerosis

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.

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.

Working ability in relation to disease severity, everyday occupations and well-being in women with limited systemic sclerosis.

OBJECTIVE To investigate how women with SSc and varying degrees of working ability differed regarding disease severity, everyday occupations and well-being. Working ability was operationalized according to the degree of sick leave. METHODS Forty-four women of working age with lcSSc were assessed regarding sociodemographic characteristics, disease severity including organ manifestation, perceived physical symptoms, hand function, and satisfaction with everyday occupations, self-rated health and well-being. RESULTS The subjects formed three groups with regard to reduction in working capacity. Twenty-one women (48%) had no sick leave, 15 women (34%) were on partial sick leave and eight women (18%) were temporarily on full-time sick leave or had a full disability pension. There were no statistically significant differences concerning sociodemographics between the groups. Women without sick leave had less physically demanding jobs (P = 0.026), and the hypothesis that working ability reflects lower disease severity was confirmed regarding dexterity grip force and perceived fatigue and breathlessness (P < 0.05). Greater working ability was associated with better capacity to perform activities of daily life (P < 0.01), greater satisfaction with occupations (P < 0.01), better well-being (P < 0.001) and better health (P < 0.001). CONCLUSIONS Fifty per cent of the women were restricted in their working ability; the lower the working ability, the lower their perceived well-being. This emphasizes the need for further research into the factors that promote working ability and the development of suitable methods to improve working ability.

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.

A longitudinal follow‐up of hand involvement and activities of daily living in early systemic sclerosis

Objective: To investigate the development of hand involvement and activities of daily life (ADL) in early systemic sclerosis (SSc), and to examine the usefulness of the Hand Mobility in Scleroderma (HAMIS) test in a longitudinal study. Methods: Forty‐three patients with disease duration no longer than 3 years and at least 4 years of follow‐up formed the study group. Based on skin involvement, 31 patients were classified as limited cutaneous SSc (lcSSc) and 12 as diffuse cutaneous SSc (dcSSc). The patients were assessed regarding hand function [mobility (HAMIS), grip force (Grippit), and self‐assessed hand function visual analogue scale (VAS)], vascular involvement [Raynauds phenomenon (RP)], skin involvement [modified Rodnan skin score (mRss)], and ADL capacity [the scleroderma Functional Score (FS)]. Results: Hand mobility and ADL capacity were in general good and did not change significantly. However, at the individual level 72% of the patients showed a change in HAMIS score. Grip force and perceived hand function were moderately impaired at baseline and during the follow‐up. Skin involvement in the hand/arm improved significantly (p<0.001). During the observation period, the hand/arm mRss and HAMIS score changed in parallel (rs = 0.58, p<0.001). ADL capacity correlated significantly with grip force, self‐assessed hand function, and RP at baseline, and also with HAMIS at follow‐up. Conclusions: In this study hand mobility and ADL capacity were maintained during the first years of SSc. HAMIS was found to be a feasible test for longitudinal assessment of hand mobility in SSc.

Psychometric properties of the Satisfaction with Daily Occupations (SDO) instrument and the Manchester Short Assessment of Quality of Life (MANSA) in women with scleroderma and without known illness.

This study investigated whether two instruments devised for people with mental illness, the Satisfaction with Daily Occupations (SDO) instrument and the Manchester Short Assessment of Quality of Life (MANSA), showed appropriate psychometric properties in terms of internal consistency, convergent/divergent validity, and discriminant validity when used with other samples. The study group comprised two female samples, one with physical disability (scleroderma) and one reference sample without known illness. It was hypothesized that the associations from SDO would be low or moderate to both general life satisfaction and self-rated health. The results confirmed that the associations were equal in size in both samples, but still the relationship to general life satisfaction in the scleroderma sample was somewhat higher than expected. Regarding the MANSA quality of life, the hypotheses were that the quality of life index would show high correlations with general life satisfaction and moderate with self-rated health, and these hypotheses were confirmed for the reference sample, indicating that quality of life as measured by the MANSA converged with general life satisfaction but mainly diverged from self-rated health. In the scleroderma sample, the association to health was higher than expected. Both instruments appeared to reflect constructs that were stable across the two investigated groups, and both measures could distinguish the disability group from the healthy group. The SDO obtained a good value on internal consistency in the sample with scleroderma but a somewhat low value in the reference group, while the quality of life aspect of the MANSA exhibited good internal consistency in both samples. The instruments showed promising properties, indicating that they could be used for the target groups. However, both measures need further testing of psychometric properties.

Managing work life with systemic sclerosis

OBJECTIVE To explore how individuals with SSc manage their work life. METHODS We conducted four focus group interviews, which included 17 patients currently working at least 20 h per week. The interviews were 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 subthemes were generated. RESULTS The participants perceived their work role as being important, giving them a structure in everyday life and a sense of being useful members of society. Work and private life were interacting, and different adjustments had been developed to create a satisfactory balance of activities in daily life. Three themes emerged: adjustment of work situation, adapting to own resources and disclosing limitations. Reduced working hours, flexibility in the workplace concerning time schedule, room and tasks were all valuable adjustments, and were dependent on the employer, fellow workers as well as the individuals attitude towards informing employer and colleagues about his/her limitations. The participants had simplified and rationalized a lot of household chores and pointed to the importance of prioritizing meaningful activities, as well as the necessity of having time for rest and recovery. CONCLUSIONS Reduced working hours, work flexibility and prioritizing meaningful activities and recovery were important factors in order to manage work life. Intervention, including problem-solving techniques and re-designing of activities in daily life, could be useful to coach individuals towards finding a balance in their work life.