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Objective: The 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. Methods: We 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. Results: The 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. Conclusion: The Patient-Reported Outcomes Measurement Information System Self-Efficacy measure is valid, reliable, and responsive to change for persons with systemic sclerosis.

BACKGROUND 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. METHODS Five online databases and Google Scholar were searched to identify publications through 2021 presenting data related to hand disease severity and fatigue. RESULTS 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. CONCLUSIONS 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.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.

Smith-Kingsmore Syndrome (SKS) is a rare genetic syndrome associated with megalencephaly, a variable intellectual disability, autism spectrum disorder, and MTOR gain of function variants. Only 30 patients with MTOR missense variants are published, including 14 (47%) with the MTOR c.5395G>A p.(Glu1799Lys) variant. Limited phenotypic data impacts the quality of information delivered to families and the robustness of interpretation of novel MTOR missense variation. This study aims to improve our understanding of the SKS phenotype through the investigation of 16 further patients with the MTOR c.5395G>A p.(Glu1799Lys) variant. Through the careful phenotypic evaluation of these 16 patients and integration with data from 14 previously reported patients, we have defined major (100% patients) and frequent (>15%) SKS clinical characteristics and, using these data, proposed guidance for evidence-based management. In addition, in the absence of functional studies, we suggest that the combination of the SKS major clinical features of megalencephaly (where the head circumference is at least 3SD) and an intellectual disability with a de novo MTOR missense variant (absent from population databases) should be considered diagnostic for SKS.

Described herein is a green, continuous flow process for the synthesis of various aminoimidazoheterocycles, through the Gröebke-Blackburn-Bienaymé reaction (GBBR). This multicomponent procedure combines aminoazines, aldehydes and isocyanides to generate a wide variety of medicinally privileged, aminated imidazoheterocycle architectures. This method is performed in ethanol, using only mineral acid rather than the standard metal-based catalysts typical to the field. These sustainability benefits have been demonstrated even on multigram scale, exemplifying the facile scalability of the procedure. The process also boasts shorter reaction times, wider scope robustness, and improved yields compared to the currently available methods, with no requirement for an aqueous work-up procedure, affording resulting scaffolds of notable relevance, to a range of medicinal targets of academic and industrial interest.

Objectives In a longitudinal case–control observational study, we evaluated the benefits of a self-management programme for hands developed for patients with SSc. Methods Patients with SSc included in the intervention group (IG) received a concise self-management programme with emphasis on hand exercises and were evaluated during 24 weeks regarding hand pain, hand function, range of motion, grip and tip and key pinch strength. Results were compared with a control group (CG) with no intervention using an analysis of variance for repeated measures with variables transformed into ranks (P ≤ 0.05). Effect sizes were calculated using Cohen’s test. Results Of 90 patients who were evaluated, seven were excluded at enrolment and 26 were excluded during the follow-up. Data from 57 subjects (IG 40, CG 17) were used for analysis. Groups were similar at baseline, except for the Scleroderma HAQ and tip and key pinch strength. Outcome improvements were noted only in the IG (P ≤ 0.05, large effect size). In the CG, variables did not change or had even worsened (hand grip strength and finger motion). Conclusions This self-management programme based on hand exercises for SSc resulted in pain reduction and hand function, strength and range of motion improvement. It can be a simple and useful intervention, especially when a regular rehabilitation programme is not available.

Systemic sclerosis (SSc) is a heterogeneous multisystem autoimmune disease whereby its main pathological drivers of disability and damage are vascular injury, inflammatory cell infiltration, and fibrosis. These mechanisms result in diffuse and diverse impairments arising from ischemic circulatory dysfunction leading to painful skin ulceration and calcinosis, neurovascular aberrations hindering gastrointestinal (GI) motility, progressive painful, incapacitating or immobilizing effects of inflammatory and fibrotic effects on the lungs, skin, articular and periarticular structures, and muscle. SSc-related impairments impede routine activities of daily living (ADLs) and disrupt three critical life areas: work, family, social/leisure, and also impact on psychological well-being. Physical activity and exercise are globally recommended; however, for connective tissue diseases, this guidance carries greater impact on inflammatory disease manifestations, recovery, and cardiovascular health. Exercise, through myogenic and vascular phenomena, naturally targets key pathogenic drivers by downregulating multiple inflammatory and fibrotic pathways in serum and tissue, while increasing circulation and vascular repair. G-FoRSS, The Global Fellowship on Rehabilitation and Exercise in Systemic Sclerosis recognizes the scientific basis of and advocates for education and research of exercise as a systemic and targeted SSc disease-modifying treatment. An overview of biophysiological mechanisms of physical activity and exercise are herein imparted for patients, clinicians, and researchers, and applied to SSc disease mechanisms, manifestations, and impairment. A preliminary guidance on exercise in SSc, a research agenda, and the current state of research and outcome measures are set forth.

Summary Background In the ongoing, phase 3 PACIFIC trial, durvalumab improved the primary endpoints of progression-free survival and overall survival compared with that for placebo, with similar safety, in patients with unresectable, stage III non-small-cell lung cancer. In this analysis, we aimed to evaluate one of the secondary endpoints, patient-reported outcomes (PROs). Methods PACIFIC is an ongoing, international, multicentre, double-blind, randomised, controlled, phase 3 trial. Eligible patients were aged at least 18 years, had a WHO performance status of 0 or 1, with histologically or cytologically documented stage III, unresectable non-small-cell lung cancer, for which they had received at least two cycles of platinum-based chemoradiotherapy, with no disease progression after this treatment. We randomly assigned patients (2:1) using an interactive voice response system and a blocked design (block size=3) stratified by age, sex, and smoking history to receive 10 mg/kg intravenous durvalumab or matching placebo 1–42 days after concurrent chemoradiotherapy, then every 2 weeks up to 12 months. The primary endpoints of progression-free survival and overall survival have been reported previously. PROs were a prespecified secondary outcome. We assessed PRO symptoms, functioning, and global health status or quality of life in the intention-to-treat population with the European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Questionnaire-Core 30 (QLQ-C30) version 3 and its lung cancer module, the Quality of Life Questionnaire-Lung Cancer 13 (QLQ-LC13) at the time of random allocation to groups, at weeks 4 and 8, every 8 weeks until week 48, and then every 12 weeks until progression. Changes from baseline to 12 month in key symptoms were analysed with mixed model for repeated measures (MMRM) and time-to-event analyses. A 10-point or greater change from baseline (deterioration or improvement) was deemed clinically relevant. This study is registered with ClinicalTrials.gov , NCT02125461 , and EudraCT, 2014-000336-42. Findings Between May 9, 2014, and April 22, 2016, 476 patients were assigned to receive durvalumab, and 237 patients were assigned to receive placebo. As of March 22, 2018, the median follow-up was 25·2 months (IQR 14·1–29·5). More than 79% of patients given durvalumab and more than 82% of patients given placebo completed questionnaires up to week 48. Between baseline and 12 months, the prespecified longitudinal PROs of interest, cough (MMRM-adjusted mean change 1·8 [95% CI 0·06 to 3·54] in the durvalumab group vs 0·7 [–1·91 to 3·30] in the placebo group), dyspnoea (3·1 [1·75 to 4·36] vs 1·4 [–0·51 to 3·34]), chest pain (−3·1 [–4·57 to −1·60] vs −3·5 [–5·68 to −1·29]), fatigue (−3·0 [–4·53 to −1·50] vs −5·2 [–7·45 to −2·98]), appetite loss (−5·8 [–7·28 to −4·36] vs −7·0 [–9·17 to −4·87]), physical functioning (0·1 [–1·10 to 1·28] vs 2·0 [0·22 to 3·73]), and global health status or quality of life (2·6 [1·21 to 3·94] vs 1·8 [–0·25 to 3·81]) remained stable with both treatments, with no clinically relevant changes from baseline. The between-group differences in changes from baseline to 12 months in cough (difference in adjusted mean changes 1·1, 95% CI −1·89 to 4·11), dyspnoea (1·6, −0·58 to 3·87), chest pain (0·4, −2·13 to 2·93), fatigue (2·2, −0·38 to 4·78), appetite loss (1·2, −1·27 to 3·67), physical functioning (−1·9, −3·91 to 0·15), or global health status or quality of life (0·8, −1·55 to 3·14) were not clinically relevant. Generally, there were no clinically important between-group differences in time to deterioration of prespecified key PRO endpoints. Interpretation Our findings suggest that a clinical benefit with durvalumab can be attained without compromising PROs. This result is of note because the previous standard of care was observation alone, with no presumed detriment to PROs. Funding AstraZeneca.

Recent evidence suggests that relative to nonshy children, shy children exhibit a lower overall frontal EEG alpha/delta ratio (ADR) during middle childhood, possibly reflecting relatively less frontal brain maturation at this age. We examined this same ADR measure in relation to the stability of observed shyness and parent-reported child social anxiety measured across two laboratory visits separated by approximately 1 year during late childhood in 51 children (33% female, age range 10-16 years). We found that the overall frontal ADR score was significantly lower among children with high, stable observed shyness and parent-reported child social anxiety compared to children in the low, stable class. Findings provide convergent evidence suggesting that the stability of shyness in late childhood may be linked to relatively less overall frontal brain maturation at this age. We speculate on the adaptive function of delaying frontal brain maturation in the origins and maintenance of children's shyness.

Study Design This study used a quasi-experimental design where patients were evaluated before and after participation in the self-management program. Introduction Hands are commonly affected in systemic sclerosis (SSc). Strategies to maintain or improve hand function are indicated upon diagnosis and throughout the course of the disease. Purpose of the Study The purpose of this study was to develop and evaluate a home-based program for hands in patients with SSc. Methods A home-based self-management program that consisted of concise instructions about SSc and hand exercises was developed and evaluated in a group of patients with SSc during 8 weeks. Primary outcome measures were hand pain (Visual Analogue Scale) and hand function (Cochin Hand Function Scale). Secondary outcome measures were disability (Scleroderma Health Assessment Questionnaire), finger motion (delta finger-to-palm), grip strength, tip and key pinch strength, Raynaud phenomenon and digital ulcers impact, quality of life (Short Form Health Survey). For comparisons between different times analysis of variance for repeated measures was used. To calculate the effect size (ES), the Cohen's test was performed. To evaluate skin moisturizing and warming habits before and after intervention, the McNemar test was used. Statistical significance was set at P ≤ .05. Results Twenty-two SSc patients (19 women: 3 men; 16 limited scleroderma: 6 diffuse scleroderma) completed the program. Significant improvements were noted for hand pain (3.97 vs 2.21, ES: 0.69), Cochin Hand Function Scale (19.24 vs 12.48, ES: 0.48), Scleroderma Health Assessment Questionnaire (0.95 vs 0.48, ES: 1.01), delta finger-to-palm (92.86 vs 106.33, ES: 0.40), grip strength (14.43 vs 19, ES: 0.58), tip pinch strength (2.49 vs 4.18, ES: 1.15), key pinch strength (4.01 vs 5.22, ES: 0.76), Raynaud phenomenon impact (0.94 vs 0.47, ES: 0.75), Short Form Health Survey–role physical (47.38 vs 60.14, ES: 0.61), physical functioning (34.62 vs 61.9, ES: 0.18), social functioning (60.71 vs 75.6, ES: 0.64), bodily pain (50.55 vs 63.38, ES: 0.58), vitality (45.95 vs 62, ES: 2.22), mental health (56.62 vs 72.38, ES: 0.84) moisturizing, and cold avoidance habits. Patients considered the program easy to follow with no adverse effects related to exercises. Discussion We developed a home based hand care program to be offered to SSc patients. Improvements in hand function, strength, disability, motion, and overall quality of life were independent of age, income, education level, disease duration, and skin score. Our findings support those of other studies that reported the benefits of hand exercises in SSc. Some study limitations include the lack of a control group, the small number of subjects and the short-time follow up. Conclusions This home-based program for patients with SSc improved hand pain, function, mobility, and strength at the end of 8 weeks. Patient adherence and sustained efficacy is still to be determined.

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Background Ethnic disparities in surgical care and outcomes have been previously reported in studies for other surgical procedures. In addition, it has been reported that ethnic differences in postoperative analgesia exist. We aimed to determine ethnic disparities in postoperative outcomes, total opioid analgesia use, and complication rates of all patients who underwent a laparoscopic ventral hernia repair (LVHR) at our institution over a 3-y period. Methods A retrospective review of all patients who underwent an LVHR at Counties Manukau Health from January 1, 2013, to December 31, 2015, was performed in line with the Strengthening the Reporting of Observational Studies in Epidemiology statement. Results A total of 267 ventral hernias were repaired in 254 patients at Counties Manukau Health over the study period, of which most were primary umbilical ventral hernias. The majority of patients in our cohort were New Zealand European and male. Major complications, as per the Clavien-Dindo classification grade 3 and above, were observed in six patients with no deaths (2.4%). There were no statistically significant ethnic disparities in length of stay, receipt of opioid analgesia, and rates of complication observed after linear regression modeling after adjustment for confounding factors. Conclusions Our study showed that the majority of patients who had a ventral hernia repaired at our institution were mostly New Zealand European and male. Although significant ethnic disparities in patient characteristics were observed, these were not associated with ethnic disparities in postoperative outcomes after an LVHR.

International audience; OBJECTIVE: To systematically review evidence of rehabilitation interventions for improving outcomes in systemic sclerosis (SSc) and to evaluate evidence quality. METHODS: Several electronic databases were searched to identify studies in which rehabilitation professionals delivered, supervised, or participated in interventions for individuals with SSc. Randomized (RCTs) or non-randomized trials, one-arm trials, and prospective quasi-experimental studies with interventions were included if they had ≥ 10 participants. Quality appraisal was done by two independent raters using the Physiotherapy Evidence Database (PEDro) Scale. RESULTS: Sixteen good or excellent quality studies (15 RCTs, 1 prospective quasi-experimental study) were included. Most rehabilitation interventions focused on hands/upper extremities, followed by multicomponent, orofacial, and directed self-management. Sample sizes varied between 20 - 267 participants (median = 38). In 50% of studies, participants in intervention groups significantly improved compared to controls. Most studies demonstrated within-group improvements in intervention groups. Interventions varied in content, delivery, length, and dose and outcome measures collected. CONCLUSION: Existing evidence provides some support for rehabilitation in SSc, such as interventions that focus on hand and upper extremity outcomes or are multicomponent, although there is high study heterogeneity. The evidence base would benefit from interventions testing similar replicable components, use of common outcome measures, and incorporation of delivery modes that enable larger sample sizes. There are challenges in recruiting participants due to SSc’s rarity and involving participants in rehabilitation studies that require active participation over time due to high disease burden. Intervention studies designed to reduce participation barriers may facilitate translation of effective interventions into practice.

Contains fulltext : 238184.pdf (Publisher’s version ) (Closed access) Systemic sclerosis (SSc), the most lethal of rheumatologic conditions, is the cause of death in >50% of SSc cases, led by pulmonary fibrosis followed by pulmonary hypertension and then scleroderma renal crisis (SRC). Multiple other preventable and treatable SSc-related vascular, cardiac, gastrointestinal, nutritional and musculoskeletal complications can lead to disability and death. Vascular injury with subsequent inflammation transforming to irreversible fibrosis and permanent damage characterizes SSc. Organ involvement is often present early in the disease course of SSc, but requires careful history-taking and vigilance in screening to detect. Inflammation is potentially reversible provided that treatment intensity quells inflammation and other immune mechanisms. In any SSc phenotype, opportunities for early treatment are prone to be under-utilized, especially in slowly progressive phenotypes that, in contrast to severe progressive ILD, indolently accrue irreversible organ damage resulting in later-stage life-limiting complications such as pulmonary hypertension, cardiac involvement, and malnutrition. A single SSc patient visit often requires much more physician and staff time, organization, vigilance, and direct management for multiple organ systems compared to other rheumatic or pulmonary diseases. Efficiency and efficacy of comprehensive SSc care enlists trending of symptoms and bio-data. Financial sustainability of SSc care benefits from understanding insurance reimbursement and health system allocation policies for complex patients. Sharing care between recognised SSc centers and local cardiology/pulmonary/rheumatology/gastroenterology colleagues may prevent complications and poor outcomes, while providing support to local specialists. As scleroderma specialists, we offer a practical framework with tools to facilitate an optimal, comprehensive and sustainable approach to SSc care. Improved health outcomes in SSc relies upon recogntion, management and, to the extent possible, prevention of SSc and treatment-related complications.

Objective: Although fatigue is one of the most problematic symptoms for people with systemic sclerosis, little is known about how fatigue impacts daily life over time. Such information is important when developing fatigue management interventions. This study was conducted to examine (1) if fatigue severity predicted outcomes of worse functioning (social participation, physical function), and quality of life and (2) if level of self-efficacy moderated significant relationships between fatigue and these outcomes. Methods: Data were utilized from a clinical trial in which an online self-management intervention was tested (N = 267). Fatigue, social participation, and physical function were assessed by PROMIS measures. Quality of life was assessed by the EuroQol 5-domain instrument. Linear regressions were performed to examine how baseline fatigue related to functioning and quality of life outcomes 16 weeks later controlling for relevant covariates. PROMIS measures were used to measure self-efficacy in managing symptoms, daily activities, medications and treatments, emotions, and social interactions. Results: Fatigue at baseline significantly predicted social participation 16 weeks later, but did not predict physical functioning or quality of life. Self-efficacy variables did not moderate the association between fatigue and social participation. Conclusion: Fatigue severity predicted decreased social participation in people with systemic sclerosis. Interventions targeting fatigue should include support to maintain participation of social roles and activities. The level of reported self-efficacy did not vary the strength of the association between fatigue and decline in social participation indicating that there may be other targets to treat fatigue intervention beyond self-management.

INTRODUCTION: In the phase II ATLANTIC study, durvalumab provided durable responses with acceptable tolerability in heavily pretreated patients with advanced NSCLC, across three independent patient cohorts defined by EGFR/ALK status and tumour PD-L1 expression. Preliminary overall survival (OS) data were encouraging. We now report final OS and updated safety data. METHODS: Patients with advanced NSCLC with disease progression following ≥2 previous systemic regimens received durvalumab 10 mg/kg every 2 weeks. The primary endpoint was objective response rate among patients with increased PD-L1 expression (defined as ≥25 % or ≥90 % of tumour cells [TCs], cohort-dependent). Secondary endpoints included OS and safety. RESULTS: 444 patients received durvalumab: 111 in Cohort 1 (EGFR+/ALK+), 265 in Cohort 2 (EGFR-/ALK-), and 68 in Cohort 3 (EGFR-/ALK-; TC ≥ 90 %). Median (95 % CI) OS was 13.3 months (6.3-24.5) in patients with EGFR+/ALK+ NSCLC with TC ≥ 25 %, 10.9 months (8.6-13.6) in patients with EGFR-/ALK- NSCLC with TC ≥ 25 %, and 13.2 months (5.9-not reached) in patients with EGFR-/ALK- NSCLC with TC ≥ 90 %. Median (95 % CI) OS was slightly shorter in patients with TC

Identification and measurement of motor speech impairments is an important part of the diagnostic pathway in dementia. Accurate assessment of speech and language deficits can enhance diagnostic accuracy where clinical syndromes are differentiated by communication profiles, as is the case in primary progressive aphasias. In this review we provide an overview of motor speech disorders and how they manifest in the most common forms of dementia, including Alzheimer's disease, dementia with Lewy bodies, and frontotemporal dementia including primary progressive aphasia. Motor speech disorders are not commonly present in Alzheimer's disease; however, they are frequently observed in the behavioral and nonfluent forms of frontotemporal dementia. Dysarthria may emerge with progression in some cases of dementia with Lewy bodies.

Objective Although individual differences in personality are known to influence quality of life in individuals with schizophrenia, relatively few studies have attempted to identify putative links underlying this relation. Methods Here, we examined associations among temperamental shyness, hormones (ie baseline salivary cortisol and testosterone), and quality of life (QoL) measured in 42 stable outpatient adults with schizophrenia. Results We found that baseline cortisol, but not testosterone, moderated the relation between shyness and QoL (s = 1.09, p = 0.004). Among individuals with relatively low baseline cortisol, higher shyness was associated with lower Intrapsychic Foundations QoL. Individuals with relatively higher baseline cortisol reported similar QoL scores irrespective of level of shyness. Conclusion These preliminary results suggest that relatively lower baseline cortisol may be helpful to understanding the relation between temperament and Intrapsychic Foundations QoL in schizophrenia. The present findings are consistent with previous studies implicating relatively lower baseline cortisol levels in nonclinical samples of people who are shy and the negative downstream effects resulting from HPA axis dysregulation, and extends these prior findings to people with schizophrenia who are also shy.

Facilitating the emergence of a vibrant small and medium sized enterprise (SME) sector is promoted as the new development prescription for low-income countries. Academic analysis of entrepreneurs, entrepreneurship and SME sector development is characterised, though, by a lack of precision and consistency over the core terms employed. This is highly problematic. It allows obfuscation to trump insight and thus makes it extremely difficult to judge the veracity of the development prescription that is advocated or to undertake any objective assessment of the effectiveness of strategies that have been implemented. Policymakers are consequently faced with having to initiate measures that constitute little more than leaps of faith based on unproven claims and an inconsistent discourse and are therefore exposed to being influenced by a broad array of vested interests, be they vendors of microcredit, management consultants, NGOs or economists of various persuasions. This paper argues for a much-needed consistency with respect to the key terms entrepreneur, entrepreneurship and SME.

ObjectiveNon-pharmacological interventions support patients with connective tissue diseases to better cope with and self-manage their diseases. This study aimed to map existing evidence on non-pharmacological interventions in patients with systemic lupus erythematosus (SLE), systemic sclerosis (SSc) and mixed connective tissue diseases regarding content, feasibility and potential suitability in an e-health setting.MethodsA literature search was performed in eight different databases in July 2020. The intervention’s content was extracted using the ‘Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide’. A Sankey diagram and descriptive statistics were used to analyse the data and illustrate the relationships between the interventions.ResultsOf 8198 identified records, 119 papers were eligible. One hundred and four of them (87.4%) were conducted between 2000 and 2020, mainly in the USA (SLE n=24 (21.2%), SSc n=16 (14.2%)), Brazil (SLE n=8 (7.1%), SSc n=5 (4.4%)) and Italy (SLE n=0 (0%), SSc n=12 (10.6%)). Fifty-two studies (SLE n=24 (21.2%), SSc n=28 (24.8%)) used multicomponent interventions. The single interventions were physical exercises (SLE n=16 (14.2%), SSc n=17 (15.0%)), coaching/counselling (SLE n=11 (18.0%), SSc n=0 (0%)) and education (SLE n=2 (1.8%), SSc n=3 (2.7%)). Primary outcomes focused on physical function (SLE n=1 (0.9%), SSc n=15 (13.3%)), mouth opening in SSc (n=4 (5.9%)) and physical capacity (SLE n=2 (1.8%), SSc n=1 (0.9%)). No interventions for mixed connective tissue disease were found.ConclusionThere was a great variety in the intervention’s content due to differences in body structure, activity limitations and participation restrictions in SLE and SSc. These results highlight the need for personalised, multicomponent, non-pharmacological interventions, which could be delivered as e-health interventions.

The purpose of this study is to compare lower extremity impairments in persons with systemic sclerosis, rheumatoid arthritis, and healthy controls.The participants were a convenience sample of 64 persons with systemic sclerosis, 58 persons with rheumatoid arthritis, and 30 healthy controls. The Keitel Functional Test was used to assess lower extremity joint motion and strength. Demographic information on age, disease duration, employment, and perceived overall health was also collected.Significant differences were found between the healthy control group and both the systemic sclerosis and rheumatoid arthritis groups in rising from a chair, squatting, walking 30 m, walking up and downstairs, and the total score. For hip external rotation, there were significant differences between all three groups for the right hip; for the left hip, the systemic sclerosis group had significantly less motion than the other two groups. For standing on toes, there was only a significant difference between the systemic sclerosis and the healthy control groups.Persons with systemic sclerosis and rheumatoid arthritis have similar levels of lower extremity impairments but greater impairments compared to the healthy controls. These impairments may lead to decreased mobility paired with difficulties with activities of daily living such as lower extremity dressing, bathing, and feet care. Implications for Rehabilitation Persons with systemic sclerosis and rheumatoid arthritis have similar levels of lower extremity impairments but greater impairments compared to the healthy controls. Findings from this study indicate a need for rehabilitation for persons with systemic sclerosis and rheumatoid arthritis as the lower extremity impairments may lead to decreased mobility paired with difficulties with daily living activities such as lower extremity dressing, bathing, and feet care. The Keitel Functional Test could be used as a quick screening test for lower extremity impairments.

Background: Autoimmune Connective Tissue Disorders (CTDs), including Mixed Connective Tissue Disease (MCTD), systemic sclerosis (SSc) and systemic lupus erythematous (SLE) can lead to Raynaud phenomenon, involvement of internal organs, pain in joints, skin abnormalities and muscle weakness. Consequently, people with CTDs experience limitations in activities of daily life and restrictions in participation. Programmes promoting patient education, self-management, physical activity, and healthy life style, provided by health professionals are therefore essential to these patients. However, there is a substantial gap of knowledge about the content which should be included in non-pharmacological intervention programmes. Objectives: To identify, map and appraise the content of existent face-to-face, digital and/or distance-learning non-pharmacological intervention programmes for patients with MCTD, SSc and/or SLE to inform a EULAR funded project with the overall aim to develop a new distance learning programme realizable with digital technologies. Methods: A scoping literature review with a nested descriptive meta-analysis was performed in MEDLINE [Pubmed], EMBASE [OVID], CINAHL [EBSCO], PsycINFO [ProQUEST], the Cochrane Database of Systematic Reviews, OTSeeker, PEDro, and SciELO in September 2018. Furthermore, an international task-force identified additional grey literature and ongoing research projects. Eligibility checks of the articles based on pre-defined in- and exclusion criteria and data extractions were done independently by two researchers. The interventions contained in these programmes were extracted using the "Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide". A Sankey diagram and descriptive statistics were used to illustrate the relationships between the interventions and other characteristics of the studies. The protocol was pre-published on ResearchGate. Results: Of 6667 identified records, 94 papers were eligible. Sixty-one studies (65%) were conducted between 2000 and 2018, mainly in the USA (35 [37%]), Brazil (11 [12%]) and Italy (10 [11%]). Thirty-three studies (35%) were randomised controlled trials, 17 (18%) were one-group pre-post-test designs and 12 (16%) clinical trials without randomisation (Figure 1). Overall, 4274 patients participated; 2955 had SLE [69%] and 1319 had SSc [31%], thus no studies with MCTD where found. The main content of the intervention programmes included exercises (22 [23%]), self-management (9 [10%]) and education (7 [7%]), with treatment goals focusing mainly on physical function (27 [29%]), quality of life (19 [20%]) and fatigue (12 [16%]). The interventions (67 [72%]) included or were based on an initial face-to-face component. Conclusion: There was a variety of programmes content and interventions due to different consequences regarding activity limitations and participation restrictions in autoimmune CTDs. This highlights the need for personalized, multicomponent, non-pharmacological interventions. Disclosure of Interests: Valentin Ritschl: None declared, Ricardo Ferreira: None declared, Ruben Fernandes: None declared, Eduardo Santos: None declared, Kim Fligelstone: None declared, Helena Gaspar: None declared, Linda Schraven: None declared, Judy Ammerlaan: None declared, Georg Stummvoll: None declared, Maria Joao Salvador: None declared, Janet L Poole: None declared, Cornelia van den Ende: None declared, Carina Bostrom: None declared, Tanja Stamm Grant/research support from: TS has received grant support from AbbVie., Paid instructor for: TS has received speaker fees from AbbVie, Janssen, MSD, Novartis, and Roche.

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.

Background Systemic sclerosis (SSc) is an auto-immune connective tissue disease characterized by fibrosis of skin, blood vessels, and internal organs that results in significant disability. Objective To identify the work barriers faced by people with systemic sclerosis (SSc) in maintaining employment. Methods Thirty-six people with SSc who were working more than 8 hours per week completed the Work Experience Survey, which contains lists of potential work barriers, including the ability to travel to and from work; get around at work; perform essential job functions, including physical, cognitive, and task-related activities; work with others; and manage work conditions. Results Thirty-three participants completed and returned the questionnaires, most of whom were female, and working full time and in professional careers. Principal disease symptoms included fatigue, Raynaud's phenomenon, esophageal involvement, and leg or hand/wrist pain. All participants reported some barriers with a mean of 18 barriers per participant. At least three quarters of participants cited outside temperature (82%), cold temperatures inside the workplace (76%), and household work (76%), as barriers. The next most common barriers were using both hands (64%), arranging and taking part in social activities (64%), being able to provide self-care (61%) and working 8 hours (58%). Conclusion Participants reported a wide range of barriers, from cold temperatures, to physical job, fatigue related, and non-workplace demands, in maintaining the worker role. The barriers reflect the disease symptoms they reported. Identifying workplace barriers facilitates the creation of job accommodations or adaptations that will allow people with SSc to continue working.

A distributed sensing capable high temperature D-shaped optical fiber modified with a palladium nanoparticle sensitized mesoporous (∼5 nm) TiO2 film, is demonstrated. The refractive index of the TiO2 film was reduced using block copolymer templating in order to realize a mesoporous matrix, accommodating integration with optical fiber. The constructed sensor was analyzed by performing direct transmission loss measurements, and by analyzing the behavior of an integrated fiber Bragg grating. The inscribed grating should reveal whether the refractive index of the composite film experiences changes upon exposure to hydrogen. In addition, with frequency domain reflectometry the distributed sensing potential of the developed sensor for hydrogen concentrations of up to 10% is examined. The results show the possibility of detecting chemical gradients with sub-cm resolution at temperatures greater than 500 °C.

Objective: To develop and validate a short form of the Cochin Hand Function Scale (CHFS), which measures hand disability, for use in systemic sclerosis, using objective criteria and reproducible techniques. Methods: Responses on the 18-item CHFS were obtained from English-speaking patients enrolled in the Scleroderma Patient-Centered Intervention Network Cohort. CHFS unidimensionality was verified using confirmatory factor analysis, and an item response theory model was fit to CHFS items. Optimal test assembly (OTA) methods identified a maximally precise short form for each possible form length between 1 and 17 items. The final short form selected was the form with the least number of items that maintained statistically equivalent convergent validity, compared to the full-length CHFS, with the Health Assessment Questionnaire (HAQ) disability index (DI) and the physical function domain of the 29-item Patient-Reported Outcomes Measurement Information System (PROMIS-29). Results: There were 601 patients included. A 6-item short form of the CHFS (CHFS-6) was selected. The CHFS-6 had a Cronbach's alpha of 0.93. Correlations of the CHFS-6 summed score with HAQ DI (r = 0.79) and PROMIS-29 physical function (r = -0.54) were statistically equivalent to the CHFS (r = 0.81 and r = -0.56). The correlation with the full CHFS was high (r = 0.98). Conclusion: The OTA procedure generated a valid short form of the CHFS with minimal loss of information compared to the full-length form. The OTA method used was based on objective, prespecified criteria, but should be further studied for viability as a general procedure for shortening patient-reported outcome measures in health research.

© 2016 American Chemical Society. Active data screening is an integral part of many scientific activities, and mobile technologies have greatly facilitated this process by minimizing the reliance on large hardware instrumentation. In order to meet with the increasingly growing field of metabolomics and heavy workload of data processing, we designed the first remote metabolomic data screening platform for mobile devices. Two mobile applications (apps), XCMS Mobile and METLIN Mobile, facilitate access to XCMS and METLIN, which are the most important components in the computer-based XCMS Online platforms. These mobile apps allow for the visualization and analysis of metabolic data throughout the entire analytical process. Specifically, XCMS Mobile and METLIN Mobile provide the capabilities for remote monitoring of data processing, real time notifications for the data processing, visualization and interactive analysis of processed data (e.g., cloud plots, principle component analysis, box-plots, extracted ion chromatograms, and hierarchical cluster analysis), and database searching for metabolite identification. These apps, available on Apple iOS and Google Android operating systems, allow for the migration of metabolomic research onto mobile devices for better accessibility beyond direct instrument operation. The utility of XCMS Mobile and METLIN Mobile functionalities was developed and is demonstrated here through the metabolomic LC-MS analyses of stem cells, colon cancer, aging, and bacterial metabolism.

A new spectroscopic technique is presented, with which environmentalchemistry-induced thermal emissivity changes of thin films are extracted with high isolation through evanescent tunneling. With this method the hydrogen-induced emissivity changes of films of TiO2 , Pd-TiO2 , and Au-TiO2 , with properties of high conductivity, hydrogen chemisorption, and plasmonic activity, are characterized in the UV-vis and NIR wavelength ranges, at 1073 K.

This letter presents a high-temperature fiber optical hydrogen sensor with operational temperatures up to 800 °C. The sensor is based on a single-crystal sapphire fiber coated with Pd nanoparticles incorporated TiO2 nanostructured thin film. The template-based sol-gel chemistry was applied to synthesize the nanostructured porous thin films. The sensitivity and response time of the sensor was evaluated for hydrogen concentrations varying from 0.02% to 4%. The effects of temperature on the hydrogen gas sensing properties were investigated from 600 °C to 800 °C.

103 Background: Uninterrupted care is essential for optimal outcomes in cancer care. The COVID-19 pandemic presented numerous challenges in providing continuity of care for many facilities. Our practice was able to deliver ongoing treatment for a large volume of our patients while maintaining a safe environment. Methods: A practice-wide effort to continue therapy in cancer patients undergoing active treatment began in March 2020 as the peak of the pandemic was beginning in Tennessee. Those patients who were receiving active treatment continued the planned treatment while reducing non-acute treatment visits. We assessed the volume of patients receiving treatments in our facilities for two periods: JanuaryDecember 2019 and January-May 2020. We compared the aggregate number of chemotherapy infusions, therapeutic infusions and injections as well as total treatments. Results: Overall, treatments remained relatively stable without a significant change in treatment volumes. There was a 3.69% decline in total treatment with therapeutic infusions (-9.68%) and injections (-7.85%) which accounted for the majority of deferred treatments. Chemotherapy infusions remained stable with an average increase (1.90%) in treatments. Conclusions: During the COVID-19 pandemic, our facility was able to maintain stable treatment numbers while providing safe care to our patients. We had no known diagnosed COVID-19 cases from potential exposures in our clinics. Decreases in treatment reflected less critical therapies. There did seem to be a delay for chemotherapy/immunotherapy that seemed to resolve as the peak passed for this region. Offloading of less critical treatments can result in continued treatment of cancer patients during a pandemic. [Table: see text]

263 Background: A large community oncology practice in Tennessee participates in value-based payment arrangements, the success of which depends on close patient monitoring. Telemedicine as an innovative solution was initiated in 2017. The service was limited, due to regulation, licensure requirements, and lack of reimbursement, to survivorship visits, clinical trial consent visits, rural hospital consults and genetic counseling. During the COVID pandemic and loosening of restrictions, telemedicine services were expanded. Methods: We identified a cloud-based platform that allowed patients to use any device with a camera and microphone and required no software downloads. On-line training sessions were provided to clinical staff. All training and workflow implementation were completed in a 2-week time frame. Telemedicine was expanded to include surveillance, urgent care, psychology, palliative care and post-BMT visits as well as new patient consults for medical, radiation and gynecologic oncology patients. Patient satisfaction surveys were administered. Results: Our telemedicine visits increased weekly beginning March 1, peaking in the month of April with an average of 77 scheduled telemedicine visits per day across the practice. During the month of April, our practice saw a record clinical trial accrual in our Phase-1 Drug Development Unit with a 22% increase over the previous average. Patients who responded to a satisfaction survey were highly satisfied with the telemedicine visit with a 73% positive response rate. Nearly half of our eligible patients did not have the technology or broad-band access to be able to participate in telemedicine. Conclusions: Our prior experience with telemedicine, though limited, facilitated the development of an infrastructure that provided adequate number of devices and internet bandwidth capacity to support rapid expansion of telemedicine. We were able to maintain high quality care and access to clinical trials during the pandemic and see the value of this service long-term. We hope to add tele-pharmacy and care coordination services. Political leadership and patient advocacy groups should explore ways to ensure that all patients may benefit from this technology, especially those in under-served areas.

9 Background: The use of biosimilar drugs in the treatment of cancer offer an opportunity for oncology providers to decrease total cost of care while preserving quality. However, it remains unclear whether providers and patients may resist biosimilar use due to concerns over safety and efficacy. Our national network of 5 practices with over 100 clinics committed to a conversion to therapeutic biosimilars for trastuzumab and bevacizumab after their introduction in July 2019. Methods: Common steps to foster therapeutic biosimilar conversion included frequent communication from medical directors to providers and staff, incorporation of biosimilars into default treatment regimen orders, providing clinical teams lists identifying candidates for conversion, and tracking reasons why biosimilar switch did not occur. Most practices prioritized converting patients initiating new treatments, then later transitioning patients receiving maintenance therapy. This phased approach was taken to ensure that prior authorization and patient consent could be obtained prior to conversion. Rates of biosimilar use were calculated by comparing the number of administrations for which a biosimilar was given to the total number of administrations for which a biosimilar could have been given. Cost savings were calculated by comparing the difference in Medicare allowed rates for each originator and biosimilar drug pair at the time of administration. Results: Biosimilar use increased over time at all practices, from 0% to an average of 67% for trastuzumab and 78% for bevacizumab. The decrease in cost attributed to the use of biosimilars in the study period totaled over $4.4 million. Challenges to biosimilar use included physician preference for the originator drug, difference in preferred agents across payers, and challenges with biosimilar drug storage. Patients rarely had concerns over efficacy and safety. Conclusions: Therapeutic biosimilar adoption in a large oncology network is feasible and can lead to significant cost savings. [Table: see text]

Date Presented 03/27/20 In the emerging field of telerehab, OTs can provide rehabilitation in novel ways, such as by using apps or other technologies. Adherence to home exercise is a critical part of sustaining therapeutic gains, but often home exercise is not completed and function may decline after discharge. We show how an app was used to track home exercises, as well as facilitators of and barriers to use. Such information will be important for practitioners when considering using apps and other technologies. Primary Author and Speaker: Susan Murphy Additional Authors and Speakers: Donnamarie Krause Contributing Authors: Erin Welsh, Angela Lyden, Mary Barber, Maya Sabbagh, Vivek Nagaraja, Erica Bush, Janet Poole, Dinesh Khanna

Evidence Connection articles provide a clinical application of systematic reviews developed in conjunction with the American Occupational Therapy Association’s (AOTA’s) Evidence-Based Practice Project. In this Evidence Connection article, we describe a case report of a person recently diagnosed with fibromyalgia. The occupational therapy assessment and intervention process in the home setting is described. Findings from the systematic review (Poole & Siegel, 2017) on this topic were published in the January/February 2017 issue of the American Journal of Occupational Therapy and in AOTA’s Occupational Therapy Practice Guidelines for Adults With Arthritis and Other Rheumatic Conditions (Poole et al., 2017). Each article in this series summarizes the evidence from the published reviews on a given topic and presents an application of the evidence to a related clinical case. Evidence Connection articles illustrate how the research evidence from the reviews can be used to inform and guide clinical reasoning.

Head and neck squamous cell carcinoma (HNSCC) is the 6th most common cancer worldwide and poses a significant health burden due to its rising incidence. Although the proto-oncogene pituitary tumor–transforming gene 1 (PTTG) predicts poor patient outcome, its mechanisms of action are incompletely understood. We show here that the protein PBF modulates PTTG function, is overexpressed in HNSCC tumors, and correlates with significantly reduced survival. Lentiviral shRNA attenuation of PTTG or PBF expression in HNSCC cells with either wild-type or mutant p53, and with and without HPV infection, led to dysregulated expression of p53 target genes involved in DNA repair and apoptosis. Mechanistically, PTTG and PBF affected each other's interaction with p53 and cooperated to reduce p53 protein stability in HNSCC cells independently of HPV. Depletion of either PTTG or PBF significantly repressed cellular migration and invasion and impaired colony formation in HNSCC cells, implicating both proto-oncogenes in basic mechanisms of tumorigenesis. Patients with HNSCC with high tumoral PBF and PTTG had the poorest overall survival, which reflects a marked impairment of p53-dependent signaling. Significance: These findings reveal a complex and novel interrelationship between the expression and function of PTTG, PBF, and p53 in human HNSCC that significantly influences patient outcome. Cancer Res; 78(20); 5863–76. ©2018 AACR.

The purpose of this study was to examine the extent of lower extremity impairments in motion and strength in people with systemic sclerosis and the relationships of the impairments to limitations in activities of daily living primarily involving the lower extremities. Participants were 69 persons with SSc who received evaluations of lower extremity joint motion (Keitel function test), strength (timed-stands test), and basic mobility (timed up and go test) and completed a demographic questionnaire regarding symptoms in the lower extremities. Activity limitations were measured by the Rheumatoid and Arthritis Outcome Score (RAOS) which examines functional ability, pain, and quality of life. The participants had difficulty with items requiring external rotation of the hips and lower extremity strength. There were moderate correlations between the impairment measures of joint motion, strength, mobility, and activity limitations. Fair correlations were found between the skin scores and the RAOS sections except for pain. The results of this study show that lower extremity involvement is present in persons with SSc. The findings, regarding strength, mobility, and joint motion are related to the ability to perform everyday activities involving the lower extremities, suggest that these areas should be targeted for intervention in persons with SSc.

Patients dependent on parenteral nutrition (PN) are among a group at risk of developing iodine deficiency. Supplementation with iodine in this population has been debated in a number of studies, resulting in variable clinical practices. The Committee on Clinical Practice Issues of the American Society for Clinical Nutrition recommends a dose of 1 mcg/kg/d of parenteral iodine for patients receiving PN. At our institution, PN trace elements do not include iodine, although this is not the case internationally. Our study sought to assess iodine levels and thyroid function in a cohort of PN-dependent pediatric patients.A retrospective analysis studied 32 pediatric patients with a variety of medical diagnoses who received PN as a primary means of nutrition for 6 months or longer. Patients received variable proportions of their total caloric intake as PN, which ranged from 14%-100%. Iodine and thyroid function levels were obtained by serum sampling.No patient in our cohort of 32 demonstrated thyroid dysfunction or developed iodine deficiency. The length of time on PN and the percentage of total nutrition intake as PN were not associated with iodine levels (P.89 and P.73, respectively). There were no significant associations between age (P.342), clinical diagnosis (P.46), or sex (P.43) on iodine status. There were no incidences of abnormal iodine levels in our cohort. Our study suggests that pediatric patients older than 6 months receiving PN may not benefit from iodine supplementation, but further investigation is needed.

Objective To systematically and comprehensively document the effectiveness of nonpharmacologic interventions on physical functioning and psychological well-being in patients with systemic sclerosis (SSc). Methods Multiple electronic databases were searched for studies on the effectiveness of nonpharmacologic interventions in SSc. Randomized clinical trials (RCTs), controlled clinical trials (CCTs), and observational designs (ODs) with ≥10 participants were included. Two reviewers independently assessed methodologic quality using the Downs and Black checklist. Results Twenty-three studies (9 RCTs, 4 CCTs, and 10 ODs) were included. Studies assessing comparable interventions were grouped, resulting in data for 16 different interventions. The total number of patients included per study ranged from 10 to 53. Seventeen different outcome domains were assessed, with hand function, limitations in activities, and quality of life being assessed most frequently. Three studies, all RCTs, were rated as high quality. These RCTs reported that 1) a multifaceted oral health intervention improves mouth hygiene, and additional orofacial exercises did not improve mouth opening, 2) a multidisciplinary team-care program improves limitations in activities, mouth opening, and hand grip strength, and 3) manual lymph drainage improves hand function, limitations in activities, and quality of life. Conclusion The body of knowledge regarding nonpharmacologic care in SSc is very limited due to the wide variety in studied interventions and outcomes in the relatively uncommon but highly disabling disease. To structure and focus future research, an international consensus should be established to prioritize primary targets for nonpharmacologic treatment and the content of interventions and to agree on a core set of outcome measures.

The aviation industry in Australia has aspirations to supply 5% of its domestic fuel use from biomass by 2020. The majority of available sources of biomass in Australia are lignocellulosic, and novel production systems that integrate existing land uses with energy production systems could have many benefits to growers and regions through enterprise diversification. This study assessed the operational and economic factors associated with lignocellulosic biomass supply for production of sustainable aviation fuel in a case study region in central Queensland, Australia. We examined the potential for biomass supply from native grasses, naturally regenerating woody vegetation (regrowth), and newly established plantings of short rotation trees (SRT) from the Fitzroy Catchment (14.2 million hectares). We outline a hypothetical industry scale-up strategy that achieves a production target of 470 ML of aviation fuel within a 25 year timeframe. We assess the amount of biomass required to support the scale-up strategy and the associated costs of supply to meet production targets during the scale-up. Approximately 5 million tonnes of biomass per year are required to support full production capacity after 25 years; 1.1 millions of land is required to be managed to supply this quantum of biomass. A preliminary assessment of the cost of supply for each feedstock indicates that grasses are most expensive at ~$142 t −1 due to relatively low biomass potentially available for harvest per hectare, and relatively high costs of harvesting and transporting compared with woody biomass. Regrowth is the least expensive at ~$56 t −1 due to low establishment and maintenance costs. We conclude that the case study region has the potential to produce sufficient biomass to support the hypothetical industry scale-up and that a mixed feedstock base maximises the sustainability of biomass supply. We discuss a range of sustainability issues associated with biomass production.

Thermal fluctuations of charged particles, fluctuations akin to Brownian motion, can excite optical surface-states leading to the concept of the thermal near-field, which is a highly localized, and, therefore, evanescent optical density of states that exist at distances much less than the thermal emission wavelength. By tunneling the surface charge emitted photons into nearby waveguides, the thermally excitable near-field optical density of states can be enhanced, engineered, and efficiently extracted to the far-field for observation. With this technique, the plasmonic thermal near-field of a 10nm thick ITO film, known to have plasmonic activity in the 1500nm wavelength region, was probed under external illumination and by thermal excitation at 873K. The results confirm that waveguides provide a large density of optical channels with spatial overlap and k-vector matching to facilitate plasmon de-excitation in the near-field through photon tunneling for extraction into the far-field. Furthermore, it is shown that the thermal near-field can be observed without the introduction of a vacuum-gap, a feature unique to this particular method., Comment: 5 pages, 3 figures

This session will discuss patient and stakeholder involvement as members of the research team on a grant funded by the Patient Centered Outcomes Research Institute (PCORI). Patients with a rare chronic disease, systemic sclerosis, and members from key stakeholder organizations were involved in evaluating, revising and testing the effectiveness of an internet self-management program. They participated at several levels of engagement including planning the study, conducting the study, and disseminating the results. This session will discuss how engagement occurred at each of these levels through different opportunities such as creating interventions, identifying outcomes, recruiting, presenting findings, and planning dissemination efforts. The benefits and challenges for both researchers and patient research partners will also be described. Disclosure of Interest None declared

An improvement in light confinement in sapphire fiber is obtained by employing nanoporous alumina as a cladding. The fabrication strategy entails freeze-coating metal Al on sapphire fiber and its subsequent anodization to form alumina cladding with highly organized nanopore channels vertically aligned to the fiber axis with dimensions of ~20 nm. We investigated the confinement dependence on the porosity of the cladding, showing an improvement in comparison to unclad sapphire fibers. The versatility of anodized alumina cladding with tunable structural and optical characteristics has the potential to enable a new class of specialty sapphire optical fibers by engineering the light propagation for new sensor development.