Dataset Information

Fatigue and activity management education for individuals with systemic sclerosis: Adaptation and feasibility study of an intervention for a rare disease.

ABSTRACT:

Purpose

Fatigue is an overlooked symptom for musculoskeletal diseases, including rare conditions like systemic sclerosis (SSc). The purpose of this study were the following: (1) to adapt the content and delivery method of an existing fatigue intervention, and (2) to determine the feasibility of Fatigue and Activity Management Education in Systemic Sclerosis (FAME-iSS).

Methods

In Phase 1 adaptations were recorded using the Framework for Modification and Adaptations. In Phase 2, participants completed the 6-week FAME-iSS intervention and baseline, post-intervention, and 3-month follow-up assessments measuring fatigue levels, fatigue impact, mental health, self-efficacy, and use of energy conservation strategies. Qualitative data included a post-intervention focus group and 3-month follow-up interviews.

Results

Three main changes were made to the original intervention: (1) the content was adapted from management of Lupus-related fatigue to management of SSc-related fatigue, (2) context for delivery from Ireland to United States, and (3) in-person to online format. Participants (n = 4) were 51.8 ± 12.1 years old, had been diagnosed with SSc for 12.0 ± 8.0 years, were receiving disability support, and had college degrees. All participants had 100% attendance and completed all study activities. Participants had positive comments about the programme format, content, and implementation. Post-intervention, improvements were observed in most measures. Moderate effect sizes were noted in fatigue and self-efficacy scores.

Conclusion

Participants' positive responses supported the need for FAME-iSS for people with SSc. Even with the small sample, FAME-iSS led to improvements in fatigue and use of energy conservation strategies. The online format allowed for participation and sharing of ideas, especially during the global pandemic.

SUBMITTER: Carandang K

PROVIDER: S-EPMC9544914 | biostudies-literature | 2022 Sep

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Fatigue and activity management education for individuals with systemic sclerosis: Adaptation and feasibility study of an intervention for a rare disease.

Carandang Kristine K Poole Janet J Connolly Deirdre D

Musculoskeletal care 20220206 3

<h4>Purpose</h4>Fatigue is an overlooked symptom for musculoskeletal diseases, including rare conditions like systemic sclerosis (SSc). The purpose of this study were the following: (1) to adapt the content and delivery method of an existing fatigue intervention, and (2) to determine the feasibility of Fatigue and Activity Management Education in Systemic Sclerosis (FAME-iSS).<h4>Methods</h4>In Phase 1 adaptations were recorded using the Framework for Modification and Adaptations. In Phase 2, pa ...[more]

PMID: 35124888

Similar Datasets

Project description:Background and purposeFatigue is a common and disabling symptom in multiple sclerosis (MS). Educational interventions have shown potential to reduce fatigue. The aim was to systematically review the current best evidence on patient education programmes for MS-related fatigue.MethodsThis was a systematic review and meta-analysis following Cochrane methodology. A systematic search was conducted in eight databases (September 2023). Moreover, reference lists and trial registers were searched and experts in the field were contacted. Randomized controlled trials were included evaluating patient education programmes for people with MS with the primary aim of reducing fatigue.ResultsIn total, 1176 studies were identified and assessed by two independent reviewers; 15 studies (1473 participants) were included. All interventions provided information and education about different aspects of MS-related fatigue with different forms of application, some with components of psychological interventions. Amongst those, the most frequently applied were cognitive behavioural therapy (n = 5) and energy-conservation-based approaches (n = 4). Studies differed considerably concerning mode of intervention delivery, number of participants and length of follow-up. Interventions reduced fatigue severity (eight studies, n = 878, standardized mean difference -0.28; 95% confidence interval -0.53 to -0.03; low certainty) and fatigue impact (nine studies, n = 824, standardized mean difference -0.21; 95% confidence interval -0.42 to 0.00; moderate certainty) directly after the intervention. Mixed results were found for long-term effects on fatigue, for secondary endpoints (depressive symptoms, quality of life, coping) and for subgroup analyses.ConclusionEducational interventions for people with MS-related fatigue may be effective in reducing fatigue in the short term. More research is needed on long-term effects and the importance of specific intervention components, delivery and context.

Project description:BackgroundHand disease severity in people with systemic sclerosis (SSc) arises from connective tissue and vascular changes causing functional limitations, pain, and disability. Fatigue is not well-understood in SSc and reported to be highly distressing. It is not known how fatigue relates to these disease changes. The objective of this study was to identify which elements of hand disease severity contribute to fatigue in individuals with SSc.MethodsFive online databases and Google Scholar were searched to identify publications through 2021 presenting data related to hand disease severity and fatigue.ResultsFive articles met the inclusion criteria. The samples were 72-91% female, and 35-100% with diffuse SSc. Measures of disease severity included skin thickening (modified Rodnan score), joint involvement (mobility, tenderness, swelling), and digital ulcers. Fatigue was measured by various self-report. Joint involvement was strongly associated with fatigue. Skin thickening weakly associated with fatigue. The perceived interference of digital ulcers in daily activities was related to fatigue.ConclusionsFew studies have examined how fatigue relates to hand disease severity. While joint involvement was associated with fatigue over time and in cross-sectional studies, digital ulcers may be associated with fatigue indirectly. A conceptual model is proposed with implications for future research.Implications for RehabilitationStructural disease changes that manifest in the hands, is often associated with pain, disability, and fatigue in SSc.Fatigue is one of the most distressing symptoms of SSc and reported by 61-90% of individuals with SSc, but is not well characterized.Of measures of hand disease severity, joint involvement (contractures, swollen and tender joints) is most associated with fatigue in individuals with SSc and more so if pain is involved.A better understanding of the physiological features of disease and fatigue could provide insight into development of fatigue management interventions and help rheumatology providers work with patients to manage their fatigue.Rehabilitation assessments and interventions for hand disability need to be considered as important elements in improving all elements of quality of life for individuals with systemic sclerosis.

Project description:BACKGROUND: Although there is substantial anecdotal evidence that clutter is common among people with multiple sclerosis (MS), the literature contains no reports of studies on the actual prevalence of the problem or its impact on functional performance in this population. Clutter promotes confusion and places individuals in potentially dangerous situations by increasing their risks of falling, losing medications, and misplacing important documents. In addition, it may negatively affect activities of daily living (ADLs). Many common MS symptoms such as decreased mobility, visual or cognitive changes, fatigue, and depression can exacerbate clutter accumulation, which in turn can have detrimental effects on physical, financial, emotional, cognitive, and social functioning. It is critical for MS clinicians to address clutter management in order to improve patients' overall functional independence and participation. METHODS: A clutter reduction protocol was developed and implemented at our institution for individuals with MS. Our group program addresses psychosocial issues preventing organization and offers practical strategies for clutter removal and management to improve performance in ADLs. A clutter questionnaire is administered to individuals before and after their participation in the group program. RESULTS: Anecdotal reports indicate that the intervention helped to reduce clutter, promote a more realistic attitude toward "possessions," and establish a sense of accomplishment in controlling one's environment. Participants also reported fewer falls, feeling less isolated, increased ease in finding their medications, and a general sense of cognitive clarity in accomplishing ADLs. Outcome assessments are now being developed to objectively measure these effects as well as the prevalence of clutter within the MS population. CONCLUSIONS: Clutter management is an important area for MS clinicians to address because it can significantly affect patients' functioning, safety, performance of ADLs, and quality of life.

Dataset Information

Fatigue and activity management education for individuals with systemic sclerosis: Adaptation and feasibility study of an intervention for a rare disease.

Purpose

Methods

Results

Conclusion

Publications

Fatigue and activity management education for individuals with systemic sclerosis: Adaptation and feasibility study of an intervention for a rare disease.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets