Search

ObjectiveThe aim of this study is to examine validity, reliability, and responsiveness to change of Patient-Reported Outcomes Measurement Information System Self-Efficacy for Managing Chronic Conditions in persons with systemic sclerosis.MethodsWe conducted a post hoc analysis of the Patient-Reported Outcomes Measurement Information System Self-Efficacy measure and other quality-of-life measures from systemic sclerosis participants from a 16-week randomized control trial. The trial compared an Internet-based self-management program to a control condition where participants were provided an educational book. All participants completed outcome measures at baseline and following the 16-week trial period.ResultsThe mean age of participants was 53.7 years, 91% were female and systemic sclerosis subtype included 44.9% limited/sine and 43.1% diffuse; mean disease duration was 9.0 years. All self-efficacy subscales (Managing Emotions, Symptoms, Daily Activities, Social Interactions, and Medications/Treatment) demonstrated good internal consistency (.92-.96). All subscales showed statistically significant correlations with other validated measures of depressive symptoms and quality of life (.20-.86) but were not associated with satisfaction nor with appearance. The subscales appropriately discriminated between those with and without depressive symptoms and demonstrated responsiveness to change over the 16-week period for those who had a corresponding increase in reported quality of life.ConclusionThe Patient-Reported Outcomes Measurement Information System Self-Efficacy measure is valid, reliable, and responsive to change for persons with systemic sclerosis.

OBJECTIVE:In a pilot study, our group showed that an internet-based self-management program improves self-efficacy in systemic sclerosis (SSc). The objective of the current study was to compare an internet-based self-management program to a patient-focused educational book developed to assess measures of self-efficacy and other patient-reported outcomes in patients with SSc. METHODS:We conducted a 16-week randomized, controlled trial. RESULTS:Of the 267 participants who completed baseline questionnaires and were randomized to the intervention (internet: www.selfmanagescleroderma.com) or control (book) group, 123 participants (93%) in the internet group and 124 participants (94%) in the control group completed the 16-week randomized controlled trial (RCT). The mean ± SD age of all participants was 53.7 ± 11.7 years, 91% were women, and 79.4% had some college or a higher degree. The mean ± SD disease duration after diagnosis of SSc was 8.97 ± 8.50 years. There were no statistical differences between the 2 groups for the primary outcome measure (Patient-Reported Outcomes Measurement Information System Self-Efficacy for Managing Symptoms: mean change of 0.35 in the internet group versus 0.94 in the control group; P = 0.47) and secondary outcome measures, except the EuroQol 5-domain instrument visual analog scale score (P = 0.05). Internet group participants agreed that the self-management modules were of importance to them, the information was presented clearly, and the website was easy to use and at an appropriate reading level. CONCLUSION:Our RCT showed that the internet-based self-management website was not statistically superior to an educational patient-focused book in improving self-efficacy and other measures. The participants were enthusiastic about the content and presentation of the self-management website.

Introduction: This study explored the strategies used by people with systemic sclerosis to perform valued obligatory (self-care), committed (home management, care of others, productivity), and discretionary (leisure and socialization) activities. Method: This cross-sectional study included a convenience sample of 92 people with systemic sclerosis who completed the Valued Life Activities Scale (VLA). The VLA categorizes activities into three main domains: obligatory, committed, and discretionary. Participants indicated the type of adaptive strategy used for each activity (assistive devices, personal assistance, limited frequency, and taking more time). Participants also completed a demographic questionnaire and measures of pain, fatigue, depression, and daily activity performance. Frequency counts were calculated for strategies used for each activity. One-way analyses of variance compared the mean use of strategies across the three domains (obligatory, committed, and discretionary). Pearson correlation coefficients calculated relationships between strategy use and pain, fatigue, depression, and daily activity performance. Results: Significantly, more strategies were used for committed activities compared to obligatory activities. Limiting the frequency of performing an activity was used significantly more for committed and discretionary activities than for obligatory activities. The least used strategies were assistive devices and assistance from another person. Fatigue and depression were related to strategy use, whereas pain and daily activity performance were not. Conclusion: People with systemic sclerosis use adaptive strategies to perform VLA. However, the strategies, most frequently used, such as taking more time or limiting the frequency of performing some activities, may result in relinquishing other valued activities. [ABSTRACT FROM AUTHOR]

IntroductionPsychosocial and rehabilitation interventions are increasingly used to attenuate disability and improve health-related quality of life (HRQL) in chronic diseases, but are typically not available for patients with rare diseases. Conducting rigorous, adequately powered trials of these interventions for patients with rare diseases is difficult. The Scleroderma Patient-centered Intervention Network (SPIN) is an international collaboration of patient organisations, clinicians and researchers. The aim of SPIN is to develop a research infrastructure to test accessible, low-cost self-guided online interventions to reduce disability and improve HRQL for people living with the rare disease systemic sclerosis (SSc or scleroderma). Once tested, effective interventions will be made accessible through patient organisations partnering with SPIN.Methods and analysisSPIN will employ the cohort multiple randomised controlled trial (cmRCT) design, in which patients consent to participate in a cohort for ongoing data collection. The aim is to recruit 1500-2000 patients from centres across the world within a period of 5 years (2013-2018). Eligible participants are persons ≥18 years of age with a diagnosis of SSc. In addition to baseline medical data, participants will complete patient-reported outcome measures every 3 months. Upon enrolment in the cohort, patients will consent to be contacted in the future to participate in intervention research and to allow their data to be used for comparison purposes for interventions tested with other cohort participants. Once interventions are developed, patients from the cohort will be randomly selected and offered interventions as part of pragmatic RCTs. Outcomes from patients offered interventions will be compared with outcomes from trial-eligible patients who are not offered the interventions.Ethics and disseminationThe use of the cmRCT design, the development of self-guided online interventions and partnerships with patient organisations will allow SPIN to develop, rigourously test and effectively disseminate psychosocial and rehabilitation interventions for people with SSc.

States have placed high priority on developing early care and education systems that include early learning guidelines, curriculum, program guidelines or standards, and early childhood educator competencies. To explore how professional development and quality improvement initiatives are being integrated into emerging infant-toddler care systems, this article focuses on the case of the Program for Infant/Toddler Care (PITC). It examines PITC's purpose and overall approach to professional development, principles that guide its professional development activities, its work on multiple levels within the infant-toddler care system in California, and its gradual integration into California's coordinated system of professional development and quality improvement.

To identify the importance of and difficulty with valued activities in persons with systemic sclerosis (SSc) and to examine relationships between disease symptoms and difficulty with valued activities using the Valued Activities Scale (VLA). A secondary purpose was to examine the internal consistency of the Short-VLA Scale (S-VLA). A cross-sectional convenience sample of 99 people with SSc completed questionnaires regarding demographics, symptom severity, Health Assessment Questionnaire (HAQ), Center for Epidemiologic Studies Depression Scale (CES-D), and the VLA. Obligatory activities were rated as most important; committed activities were significantly more difficult than obligatory and discretionary. Less fatigue (p < 0.01) and lower HAQ (p < 0.001) and CES-D (p < 0.01) scores were associated with higher total VLA scores. Internal consistency of the S-VLA was excellent (Cronbach's alpha = 0.92; p < 0.0001). The correlation between the S-VLA and the VLA was excellent (r = 0.96; p < 0.001). There were moderate correlations between the S-VLA and the HAQ (r = 0.73; p < 0.0001); the correlation with the CES-D was only fair (r = 0.35; p < 0.001). Committed and discretionary activities were more difficult for people with SSc to perform. Results are similar to findings with people with rheumatoid arthritis and systemic lupus erythematosus. Home management/caregiving (committed) and leisure and social participation (discretionary) activities are more difficult to perform by people with SSc compared to self-care (obligatory) activities. Our findings that difficulty scores on the VLA were associated with more fatigue and depression suggest the need for rehabilitation to reduce disability in people with SSc. The S-VLA may be a useful screening and monitoring tool for SSc and other chronic conditions. [ABSTRACT FROM AUTHOR]

Hand 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. Five online databases and Google Scholar were searched to identify publications through 2021 presenting data related to hand disease severity and fatigue. Five 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. Few 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. Structural 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. [ABSTRACT FROM AUTHOR]