Hand function, activity limitation and health-related quality of life in patients with polymyositis and dermatomyositis

Background: Polymyositis (PM) and dermatomyositis (DM) are rare idiopathic inflammatory myopathies. Common clinical features are proximal muscle weakness and reduced muscle endurance, which can lead to activity limitation and reduced healthrelated quality of life (HRQoL). The current body of knowledge about hand function, activity limitation, and HRQoL in patients with PM and DM is limited. Aim: The overall aim of this thesis was to describe and explore hand function, activity limitation, work ability, and HRQoL in patients with PM and DM. Method: Four papers with cross-sectional, over-time, or intervention pilot study designs have been applied in this thesis. Descriptive, comparable, over time, and correlational statistics have been used. In all, 143 patients with PM and DM participated in the studies. Results: The results in this thesis showed that both women and men with PM and DM have reduced grip force and HRQoL compared to gender- and age-matched values from the literature. The reduced grip force and HRQoL were measured at the time of diagnosis in both women and men. Women had a reduced grip force at years 1-4 and at 6 years after diagnosis, while the men were affected up to 2 years after diagnosis. The HRQoL was rated lower than the normative values up to 6 years after diagnosis in women and 2 years following diagnosis in men. The grip force had a moderate to high correlation to the HRQoL dimensions of Role Physical, General Health, Vitality, and Mental Health. A hand exercise intervention seemed to be feasible to perform with good adherence but generated few individual improvements in hand function and activity performance why the protocol needs to be adjusted. Patients with reduced hand grip strength also demonstrated activity limitation (according to the Disability of the Arm, Shoulder, and Hand questionnaire) and reduced dexterity. In patients with PM and DM, 44% worked fulltime (40 h/week), 31% worked part-time, and 25% were on full-time sick leave. More than 50% of patients with PM and DM self-rated their work ability as “poor” or “less good”. Physically strenuous work components were present “quite often” to “very often” in up to 79% of the patients and were more prevalent in patients on sick leave =2 years. For those working, interfering factors in the work environment concerned task and time demands. Supporting factors were the meaning of their work, interactions with coworkers, and others. A low self-rated work ability was correlated moderate-high with a low percentage of full-time employment, the presence of work-related risk factors, and constraints in the work environment. Conclusion: Patients with PM and DM have reduced hand grip strength, lower ratings on HRQoL, and poor to less good self-rated work ability and the low grip strength may influence HRQoL whereas the proximal weakness seems to affect the ability to work. Measures of hand function and work ability should be included in care of patients with PM and DM to guide interventions that could minimize impairment and as measures in the evaluation of treatment

The "Managing Fatigue" programme - experiences shared by MS participants

BACKGROUND: The "Managing Fatigue" (MF) programme can help people living with Multiple sclerosis (MS) manage fatigue in their everyday lives. The programme has been proven feasible with Swedish occupational therapists, but there is a lack of knowledge of how MS participants experience the programme, and what they learned from participating in the programme.AIM: To describe how Swedish MS participants experience the content and structure of the Swedish MF programme, as well as what they learned from participating in the programme.MATERIAL AND METHODS: Qualitative interviews were performed with nine MS participants, and data were analysed according to direct content analysis.RESULTS: Participants experienced programme material was relevant, and they valued the structured sessions that utilised different teaching forms. Participants described the group format and the experienced course leader nurtured their learning process. They learned occupational skills to save energy, to re-value daily occupations, and initiated a process of change, but individual support is needed after programme completion.CONCLUSION AND SIGNIFICANCE: Findings support programme feasibility among MS participants, and show the importance of being able to practice skills to handle fatigue in everyday life. Future studies should consider adding outcome measures focussing on engagement in occupations when evaluating programme effectiveness

The “Managing Fatigue” Programme – Experiences Shared by participants with Multiple Sclerosis

Background: The “Managing Fatigue” program can help participants manage fatigue in their everyday lives. The programme has been proven feasible with Swedish occupational therapists, but there is a lack of knowledge of how participants experience the programme.Aim: To describe how Swedish MS participants experience the content and structure of the Swedish MF programme, as well as lessons learned from participating in the programme.Material and Methods: Qualitative interviews were performed with nine MS participants, and data were analyzed according to direct content analysis.Results: Participants experienced programme material was relevant, and they valued the structured sessions that utilized different teaching forms. Participants described the group format and the experienced course leader nurtured their learning process. They said they learned occupational skills to save energy, to re-value daily occupations, and initiated a process of change, but individual support is needed after programme completion.Conclusion and Significance: Findings support programme feasibility among MS participants, and show the importance of being able to practice skills to handle fatigue in everyday life. Future studies should focus on which outcome measures that can best detect changes of engagement in occupations, and utilize these outcome measures when the effectiveness of the programme is evaluated

Health-Related Quality of Life (HRQoL) in Idiopathic Inflammatory Myopathy: A Systematic Review

<div><p>Health-related quality of life (HRQoL) is a research priority in chronic diseases. We undertook a systematic review (registration #CRD42015024939) to identify, appraise and synthesize the evidence relating to HRQoL in idiopathic inflammatory myopathies (IIM). A comprehensive search was conducted in August 2015 using CINAHL, EMBase and Pubmed to identify studies reporting original data on HRQoL in IIM using generic HRQoL instruments. Characteristics of samples and results from selected studies were extracted and appraised using a standardized approach. Qualitative synthesis of the results was performed. Ten studies including a total of 654 IIM subjects were included in this systematic review. HRQoL was significantly impaired in all subsets of IIM compared with the general population. Disease activity, disease damage and chronic disease course were associated with poorer HRQoL. Insufficient or conflicting results were found in associations between clinical features, treatment, disease duration and mood or illness perception, and HRQoL in IIM. This study suggests that HRQoL is impaired in IIM. However, due to the paucity and heterogeneity of the evidence to date, robust estimates are lacking and significant knowledge gaps persist. There is a need for studies that systematically investigate the correlates and trajectory of HRQoL in IIM.</p></div

Health-Related Quality of Life (HRQoL) in Idiopathic Inflammatory Myopathy: A Systematic Review.

Health-related quality of life (HRQoL) is a research priority in chronic diseases. We undertook a systematic review (registration #CRD42015024939) to identify, appraise and synthesize the evidence relating to HRQoL in idiopathic inflammatory myopathies (IIM). A comprehensive search was conducted in August 2015 using CINAHL, EMBase and Pubmed to identify studies reporting original data on HRQoL in IIM using generic HRQoL instruments. Characteristics of samples and results from selected studies were extracted and appraised using a standardized approach. Qualitative synthesis of the results was performed. Ten studies including a total of 654 IIM subjects were included in this systematic review. HRQoL was significantly impaired in all subsets of IIM compared with the general population. Disease activity, disease damage and chronic disease course were associated with poorer HRQoL. Insufficient or conflicting results were found in associations between clinical features, treatment, disease duration and mood or illness perception, and HRQoL in IIM. This study suggests that HRQoL is impaired in IIM. However, due to the paucity and heterogeneity of the evidence to date, robust estimates are lacking and significant knowledge gaps persist. There is a need for studies that systematically investigate the correlates and trajectory of HRQoL in IIM

Description of the studies included in this review.

<p>Description of the studies included in this review.</p

Flow diagram of study selection.

<p>Flow diagram of study selection.</p

Summary of HRQoL results using the SF-36.

<p>Summary of HRQoL results using the SF-36.</p

Comparison of HRQoL between IIM and other chronic conditions using the SF-36.

<p>Comparison of HRQoL between IIM and other chronic conditions using the SF-36.</p

Comparison of HRQoL between IIM and other neuromuscular diseases using the INQOL.

<p>Comparison of HRQoL between IIM and other neuromuscular diseases using the INQOL.</p