Characteristics of Effective Alternative Schools in Georgia: Leaders’ Perceptions

ABSTRACT Educational leaders and district decision makers are faced with the challenge of providing support for at-risk students who are failing in traditional schools and are in danger of not graduating. Alternative schools are considered options for learning for at-risk students. However, limited research is available describing the views and experiences of the administrators who lead them. Therefore, the purpose of this qualitative study was to understand leaders’ perceptions of characteristics of effective alternative schools in Georgia, as well as challenges associated with leading them. Ten face-to-face, semi-structured interviews were conducted to investigate what eight male and two female alternative school leaders in Georgia perceived to be characteristics of effective alternative schools in Georgia. The results from this qualitative study define characteristics of alternative schools that contribute to student success, explain challenges incurred by the leaders and the students in alternative schools, and describe the benefits of alternative schools. Conclusions and recommendations are included for consideration by educational leaders and decision makers who are planning new alternative schools in their districts or seek to improve practices in existing alternative schools

Fatigue predicts future reduced social participation, not reduced physical function or quality of life in people with systemic sclerosis

Funding: The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was supported by a grant from the Patient Centered Outcomes Research Institute (PCORI; Poole/Khanna co-PIs) (Award CER-1310-08323 to J.L.P. and D.K.). The statements presented in this publication are solely the responsibility of the authors and do not necessarily represent the views of PCORI. Dr. Khanna’s work was supported by the National Institute of Arthritis and Musculoskeletal and Skin Diseases at National Institutes of Health (K24-AR-063129)Peer reviewedPostprin

Fatigue and its Association with Social Participation, Functioning and Quality of Life in Systemic Sclerosis

Supported by the Patient-Centered Outcomes Research Institute (grant CER-1310-08323 to Drs. Poole and Khanna as co–principal investigators). Dr. Khanna’s work was supported by the NIH (National Institute of Arthritis and Musculoskeletal and Skin Diseases grant K24-AR-063129).Peer reviewedPostprin

Engagement of patients with scleroderma to revise an internet self-management program

Systemic sclerosis (SSc) or scleroderma is a rare connective tissue disease. Many people do not have access to education programs. A self-management program was developed several years ago based on the literature and input from people with SSc. However, new therapies and treatment options have been developed since the program was developed. The purpose of this qualitative study was to identify and remedy gaps in an internet SSc self-management program to improve the quality of critical information relevant to effective management of the disease. Six focus groups with 30 participants with SSc were conducted: 2 telephone groups and 4 face-to-face groups. Prior to the focus group meetings, participants reviewed the existing website. A semi-structured interview guide elicited participants’ responses. Gaps were expressed in affect and positive affirmation; disease and symptom management; self-advocacy; information for caregivers, families, coworkers and strangers; tracking systems; information about local support groups; pictures and information on underrepresented groups; and general format. Discussants were positive regarding the audio voice over, exercise module, current content, health logs and checklists. People with SSc identified additional content to improve the internet self-management program. Many of the suggestions were incorporated into the existing program as modifications and additions to existing modules, patient testimonials, worksheets, resources sheets, and/or links to additional websites. People with rare, chronic conditions such as SSc need education and reliable sources of information and self-management skills. Experience Framework This article is associated with the Innovation & Technology lens of The Beryl Institute Experience Framework. (http://bit.ly/ExperienceFramework) Access other PXJ articles related to this lens. Access other resources related to this len

Fanconi anaemia in black South African patients heterozygous for the FANCG c.637-643delTACCGCC founder mutation

Background. Fanconi anaemia (FA) is an autosomal recessive, genetically heterogeneous disorder, characterised by interstrand crosslink-induced chromosome breaks, congenital abnormalities and predisposition to malignancies. It has a prevalence of about 1/40 000 in black South Africans (SAs). A founder mutation in the FANCG gene occurs in the homozygous state in 77.5% of southern African blacks. Objective. To locate additional pathogenic mutations in the FANCG gene of black FA patients who were heterozygous for the founder mutation. Methods. Further mutation analysis of the FANCG gene was undertaken in 7 patients clinically suspected of having FA. The parents of two of the patients were tested for the presence of the founder mutation to determine true heterozygosity in the patients. To clarify whether or not previously unreported variants were pathogenic, 58 random black SA individuals were screened. Results. Three novel single base pair deletions, resulting in frameshift mutations (c.247delA, c.179delT and c.899delT) were identified in 3/7 patients. A fourth patient was found to have a single base substitution resulting in a splice site mutation (c.1636+1G>A). The remaining three patients were not found to harbour any pathogenic mutations. Two non-pathogenic variants were also identified among the seven patients. Conclusion. The results of this small sample suggest that a second common mutation in the FANCG gene is unlikely in this population. However, FANCG sequencing should be performed on patients heterozygous for the common founder mutation to attempt to confirm their diagnosis.

Using Optimal Test Assembly Methods for Shortening Patientâ Reported Outcome Measures: Development and Validation of the Cochin Hand Function Scaleâ 6: A Scleroderma Patientâ Centered Intervention Network Cohort Study

Peer Reviewedhttp://deepblue.lib.umich.edu/bitstream/2027.42/134498/1/acr22893_am.pdfhttp://deepblue.lib.umich.edu/bitstream/2027.42/134498/2/acr22893.pd

Randomized Controlled Trial to Evaluate an Internet‐Based Self‐Management Program in Systemic Sclerosis

Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/148240/1/acr23595.pdfhttps://deepblue.lib.umich.edu/bitstream/2027.42/148240/2/acr23595_am.pd

New directions for patient-centred care in scleroderma : the Scleroderma Patient-centred Intervention Network (SPIN)

Systemic sclerosis (SSc), or scleroderma, is a chronic multisystem autoimmune disorder characterised by thickening and fibrosis of the skin and by the involvement of internal organs such as the lungs, kidneys, gastrointestinal tract, and heart. Because there is no cure, feasibly-implemented and easily accessible evidence-based interventions to improve health-related quality of life (HRQoL) are needed. Due to a lack of evidence, however, specific recommendations have not been made regarding non-pharmacological interventions (e.g. behavioural/psychological, educational, physical/occupational therapy) to improve HRQoL in SSc. The Scleroderma Patient-centred Intervention Network (SPIN) was recently organised to address this gap. SPIN is comprised of patient representatives, clinicians, and researchers from Canada, the USA, and Europe. The goal of SPIN, as described in this article, is to develop, test, and disseminate a set of accessible interventions designed to complement standard care in order to improve HRQoL outcomes in SSc.The initial organisational meeting for SPIN was funded by a Canadian Institutes of Health Research (CIHR) Meetings, Planning, and Dissemination grant to B.D. Thombs (KPE-109130), Sclerodermie Quebec, and the Lady Davis Institute for Medical Research of the Jewish General Hospital, Montreal, Quebec. SPIN receives finding support from the Sclemderma Society of Ontario, the Scleroderma Society of Canada, and Sclerodermie Quebec. B.D. Thombs and M. Hudson are supported by New Investigator awards from the CIHR, and Etablissement de Jeunes Chercheurs awards from the Fonds de la Recherche en Sante Quebec (FRSQ). M. Baron is the director of the Canadian Scleroderma Research Group, which receives grant folding from the CIHR, the Scleroderma Society of Canada and its provincial chapters, Scleroderma Society of Ontario, Sclerodermie Quebec, and the Ontario Arthritis Society, and educational grants from Actelion Pharmaceuticals and Pfizer. M.D. Mayes and S. Assassi are supported by the NIH/NIAMS Scleroderma Center of Research Translation grant no. P50-AR054144. S.J. Motivala is supported by an NIH career development grant (K23 AG027860) and the UCLA Cousins Center for Psychoneuroimmunology. D. Khanna is supported by a NIH/NIAMS K23 AR053858-04) and NIH/NIAMS U01 AR057936A, the National Institutes of Health through the NIH Roadmap for Medical Research Grant (AR052177), and has served as a consultant or on speakers bureau for Actelion, BMS, Gilead, Pfizer, and United Therapeutics

The Scleroderma Patient-centered Intervention Network (SPIN) Cohort : protocol for a cohort multiple randomised controlled trial (cmRCT) design to support trials of psychosocial and rehabilitation interventions in a rare disease context

Introduction: Psychosocial 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 analysis: SPIN 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 nterventions 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 dissemination: The 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.(undefined

OPTIMA: A prospective randomized trial to validate the predictive utility and cost-effectiveness of gene expression test-directed chemotherapy decisions in early breast cancer

Background: Multi-parameter gene expression assays (MPAs) are widely used to estimate individual patient residual risk in hormone-sensitive HER2-negative node-negative early breast cancer, allowing patients with low risk to safely avoid chemotherapy. Evidence for MPA use in node-positive breast cancer is limited. OPTIMA (Optimal Personalised Treatment of early breast cancer usIng Multi-parameter Analysis) aims to validate MPA’s as predictors of chemotherapy sensitivity in a largely node-positive breast cancer population