scholarly journals Development of a consensus core dataset in juvenile dermatomyositis for clinical use to inform research

2017 ◽  
Vol 77 (2) ◽  
pp. 241-250 ◽  
Author(s):  
Liza J McCann ◽  
Clarissa A Pilkington ◽  
Adam M Huber ◽  
Angelo Ravelli ◽  
Duncan Appelbe ◽  
...  
Keyword(s):  
Disease Activity ◽  
Support Groups ◽  
Juvenile Dermatomyositis ◽  
Nominal Group ◽  
Clinical Use ◽  
Web Based ◽  
Face To Face ◽  
Core Dataset ◽  
Activity Measures ◽  
Disease Damage

ObjectivesThis study aimed to develop consensus on an internationally agreed dataset for juvenile dermatomyositis (JDM), designed for clinical use, to enhance collaborative research and allow integration of data between centres.MethodsA prototype dataset was developed through a formal process that included analysing items within existing databases of patients with idiopathic inflammatory myopathies. This template was used to aid a structured multistage consensus process. Exploiting Delphi methodology, two web-based questionnaires were distributed to healthcare professionals caring for patients with JDM identified through email distribution lists of international paediatric rheumatology and myositis research groups. A separate questionnaire was sent to parents of children with JDM and patients with JDM, identified through established research networks and patient support groups. The results of these parallel processes informed a face-to-face nominal group consensus meeting of international myositis experts, tasked with defining the content of the dataset. This developed dataset was tested in routine clinical practice before review and finalisation.ResultsA dataset containing 123 items was formulated with an accompanying glossary. Demographic and diagnostic data are contained within form A collected at baseline visit only, disease activity measures are included within form B collected at every visit and disease damage items within form C collected at baseline and annual visits thereafter.ConclusionsThrough a robust international process, a consensus dataset for JDM has been formulated that can capture disease activity and damage over time. This dataset can be incorporated into national and international collaborative efforts, including existing clinical research databases.

Social Networking and the Psoriasis Patient

2010 ◽  
Vol 16a (2) ◽  
pp. 43-48
Author(s):  
Kristin Noiles ◽  
Richard Thomas
Keyword(s):  
Social Support ◽  
Social Networking ◽  
Support Groups ◽  
Online Social Networks ◽  
Psoriasis Patient ◽  
Support Networks ◽  
Online Forums ◽  
Web Based ◽  
Face To Face ◽  
Virtual Groups

The idea that social support networks can positively influence health has been well-documented. Face-to-face support groups and group therapy arose in the early 1900s as a means of providing psychological encouragement, and more recently online social networks have become available. Web-based disease representation is rapidly expanding, and virtual groups are now available for patients with psoriasis. Although these networks currently offer many helpful resources to patients and provide a medium by which individuals can communicate, they may also help to optimize psoriasis management and improve adherence to medications. These online communities may also provide a means of collecting data for research. As an adjunct to clinical management with numerous benefits, online forums will likely continue to gain popularity within the psoriasis community.

scholarly journals Prostate Cancer Support Groups

2014 ◽  
Vol 9 (2) ◽  
pp. 163-172 ◽  
Author(s):  
John L. Oliffe ◽  
Suzanne Chambers ◽  
Bernie Garrett ◽  
Joan L. Bottorff ◽  
Michael McKenzie ◽  
...  
Keyword(s):  
Prostate Cancer ◽  
Support Groups ◽  
Psychosocial Support ◽  
Information Provision ◽  
Web Based ◽  
Face To Face ◽  
Cancer Support ◽  
Educational Role ◽  
Cancer Support Groups ◽  
Cancer Specialists

To understand prostate cancer (PCa) specialists’ views about prostate cancer support groups (PCSGs), a volunteer sample of Canada-based PCa specialists ( n = 150), including urologists ( n = 100), radiation oncologists ( n = 40), and medical oncologists ( n = 10) were surveyed. The 56-item questionnaire used in this study included six sets of attitudinal items to measure prostate cancer specialists’ beliefs about positive and negative influences of PCSGs, reasons for attending PCSGs, the attributes of effective PCSGs, and the value of face-to-face and web-based PCSGs. In addition, an open-ended question was included to invite additional input from participants. Results showed that PCSGs were positively valued, particularly for information sharing, education and psychosocial support. Inclusivity, privacy, and accessibility were identified as potential barriers, and recommendations were made for better marketing PCSGs to increase engagement. Findings suggest prostate cancer specialists highly valued the role and potential benefits of face-to-face PCSGs. Information provision and an educational role were perceived as key benefits. Some concerns were expressed about the ability of web-based PCSGs to effectively engage and educate men who experience prostate cancer.

Developing information literacy courses for students through virtual learning environments in Tanzania: Prospects and challenges

IFLA Journal ◽  
2021 ◽  
pp. 034003522110182
Author(s):  
Evans F Wema
Keyword(s):  
Learning Environments ◽  
Information Literacy ◽  
Teaching And Learning ◽  
Virtual Learning ◽  
Higher Learning ◽  
Virtual Learning Environments ◽  
Web Based ◽  
Face To Face ◽  
Institutions Of Higher Learning ◽  
The Face

This article reviews literature on the use of virtual learning environments by highlighting their potential and the challenges of introducing the same in Tanzania. It introduces the concept of virtual learning environments by demonstrating their applications to support teaching and learning. The article discusses the use of virtual learning environments in teaching information literacy courses by highlighting the success of using such tools in facilitating the teaching of information literacy courses to library users. In this review, special emphasis is placed on attempts by Tanzanian institutions of higher learning to introduce web-based teaching of information literacy and the challenges faced. The review reveals the need for Tanzanian institutions of higher learning to develop virtual learning environments to facilitate the teaching of information literacy courses to students and faculty so as to reach many of those who may not manage to attend the face-to-face information literacy sessions that are offered by librarians on a regular basis.

scholarly journals Access to care and worsening eating disorder symptomatology in youth during the COVID-19 pandemic

2021 ◽  
Vol 9 (1) ◽  
Author(s):  
Rebecca Spigel ◽  
Jessica A. Lin ◽  
Carly E. Milliren ◽  
Melissa Freizinger ◽  
Julia A. Vitagliano ◽  
...  
Keyword(s):  
Quality Of Care ◽  
Eating Disorder ◽  
Access To Care ◽  
Treatment Quality ◽  
Related Factors ◽  
Web Based ◽  
Face To Face ◽  
Recovery Study ◽  
And Behaviors

Abstract Background Shelter-in-place orders and social distancing guidelines, in response to the COVID-19 pandemic, have limited traditional face-to-face interactions and led to many clinical providers transitioning to the use of videoconferencing platforms. The present study aims to assess how the COVID-19 pandemic has impacted adolescents’/young adults’ (AYA) eating disorder (ED)-related care, and how access to, changes in, perceived disruptions to, and quality of care are associated with ED thoughts and behaviors. Methods AYA enrolled in the RECOVERY study, a pre-existing web-based longitudinal study, and completed a COVID-19-specific survey (n = 89). We examined bivariate associations of four markers of care: i) access to care, ii) changes in care, iii) perceived disruption to care, and iv) quality of care. Using multiple logistic regression, we examined the associations of pandemic-related markers of care with changes in ED thoughts and behaviors. We excluded those not engaged in treatment pre-pandemic (n = 16). Results In the remaining 73 participants, reported access to care was high, with 92% of respondents continuing care with at least one ED provider during the pandemic; however, 47% stopped some treatment during the pandemic. Nearly one-third (32%) perceived a disruption in treatment. Quality of care remained high with 67% reporting care to be better than or as good as pre-pandemic. Respondents acknowledged heightened symptomatology: 81% reported increased ED thoughts and 81% reported increased ED behaviors due to COVID-19-related factors. However, none of the markers of care described were significantly associated with ED thoughts or behaviors in regression analyses adjusting for demographic variables and baseline characteristics, except our quality of care measure which was approaching significance (p = 0.07). Conclusions Our findings show the majority of AYA who had care prior to the pandemic continued receiving some element of their multi-disciplinary ED treatment and perceived their care as high quality. None of the markers of care described were statistically associated with increased ED thoughts and behaviors.

scholarly journals P138 Developing a digital remote assessment for monitoring rheumatoid arthritis disease activity

Rheumatology ◽  
2021 ◽  
Vol 60 (Supplement_1) ◽  
Author(s):  
Francesca Donadoni ◽  
Letizia Gionfrida ◽  
Benjamin Clarke ◽  
James Galloway
Keyword(s):  
Rheumatoid Arthritis ◽  
Disease Activity ◽  
Small Sample ◽  
Clinical Team ◽  
Long Term Conditions ◽  
Home Setting ◽  
Face To Face ◽  
Das 28 ◽  
Monitoring Platform ◽  
At Home

Abstract Background/Aims  In an era of increasingly stretched health care resources, accompanied by pressures to deliver more care for people with long term conditions remotely, we need innovative solutions to measure disease activity. In the case of monitoring rheumatoid arthritis (RA), a robust method of capturing reliable Disease Activity Score (DAS-28) information remotely could reduce patient visits to hospitals and free up clinic space. Information would ideally be captured from a home setting by a patient. However, self-reporting of DAS-28 has limited reliability especially at moderate or high levels of disease activity. A mechanism for remotely ascertaining DAS-28 which is both accurate and precise would improve remote management for people living with RA. Methods  We undertook a study to assess patient attitudes regarding a novel remote RA monitoring platform, which uses images and video captured movements to estimate DAS-28. The study involved a semi-structured 30-minutes video interview. Participants were adults with RA living in the UK. The interviews focused on these key areas: i) an overview of their history with the condition, ii) familiarity with DAS-28, iii) relationship with the clinical team, iv) relationship with technology and telemedicine, v) feedback on the RA monitoring platform. Results  Eleven subjects participated in the study. They reported a median disease duration of 11 years (range: 4 to 35), and all had experienced flares, with 10/11 familiar with the DAS-28 prior to the study interview. Since the start of the COVID-19 pandemic, most patients only had contact with clinicians or healthcare facilities over the phone, with only one patient having visited a hospital for a reason not directly related to RA, and one patient having no contact at all. Overall, patients expressed enthusiasm towards the RA monitoring platform and were confident that they would be able to use it at home. Access over the Internet was not perceived as a barrier, and the advantages of tracking disease progression regularly, sharing data with the consultant and saving time travelling to appointments far outweighed the disadvantages. Participants generally reported that they would most benefit from a blended interaction with the clinical team, combining face-to-face appointments with use of the platform at home rather than seeing the platform as a complete alternative to face-to-face assessment. Conclusion  This study provides the first insight into the perception and acceptance of the RA monitoring platform in a small sample of RA patients. Results are positive, and support further evaluation of the platform. Evidence to understand how technology can improve the quality of telemedicine for people with RA is urgently needed as the pandemic continues. Disclosure  F. Donadoni: None. L. Gionfrida: None. B. Clarke: None. J. Galloway: None.

scholarly journals THU0207 SUSTAINABILITY OF RESPONSE TO UPADACITINIB AS MONOTHERAPY OR IN COMBINATION AMONG PATIENTS WITH RHEUMATOID ARTHRITIS AND PRIOR INADEQUATE RESPONSE TO CONVENTIONAL SYNTHETIC DMARDS

2020 ◽  
Vol 79 (Suppl 1) ◽  
pp. 327.1-328
Author(s):  
A. Kavanaugh ◽  
M. H. Buch ◽  
B. Combe ◽  
L. Bessette ◽  
I. H. Song ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Disease Activity ◽  
Inadequate Response ◽  
Research Support ◽  
Two Phase ◽  
First Occurrence ◽  
Activity Measures ◽  
Disease Activity Measures

Background:The primary treatment goal for patients (pts) with rheumatoid arthritis (RA) is a state of sustained clinical remission (REM) or low disease activity (LDA).1,2Objectives:To assess the long-term sustainability of responses to upadacitinib (UPA), a JAK inhibitor, with or without background csDMARD(s) in pts with RA.Methods:Data are from two phase 3 randomized, controlled trials of UPA in RA pts with roughly similar baseline disease characteristics: SELECT-NEXT enrolled pts with an inadequate response (IR) to csDMARD(s) on background stable csDMARD(s) receiving UPA 15 mg or 30 mg once daily or placebo for 12 weeks (wks); SELECT-MONOTHERAPY enrolled methotrexate (MTX)-IR pts receiving UPA 15 mg or 30 mg monotherapy or blinded MTX for 14 wks. After 12/14 wks, pts could enter a blinded long-term extension and receive UPA 15 mg or 30 mg for up to 5 years. This post hoc analysis evaluated clinical REM (CDAI ≤2.8; SDAI ≤3.3), LDA (CDAI≤10; SDAI≤11), and DAS28(CRP) <2.6/≤3.2 at first occurrence before Wk 84; additionally, these measures were evaluated at 3, 6, and 12 months after the first occurrence for the total number of pts randomized to UPA 15 mg. Sustainability of response was evaluated by Kaplan-Meier only for those pts who achieved REM/LDA and was defined as time to the earliest date of losing response at two consecutive visits or discontinuation of study drug. The predictive ability of time to clinical REM/LDA was assessed using Harrell’s concordance (c)-index (for reference, an index ~ 0.5, indicates no ability to predict; an index of 1 or -1 would be a perfect prediction). The last follow up dates were 22 March, 2018 (SELECT-NEXT) and 25 May, 2019 (SELECT-MONOTHERAPY), when all pts had reached the Wk 84 visit.Results:Through Wk 84, the percent of treated pts achieving CDAI REM/LDA was 43%/79% for those receiving UPA 15 mg with background csDMARD(s) (SELECT-NEXT) and 37%/76% for those receiving UPA 15 mg without background csDMARD(s) (SELECT-MONOTHERAPY). 35%/25% of pts randomized to UPA 15 mg with background csDMARD(s) and 27%/23% of pts randomized to UPA 15 mg without background csDMARD(s) achieved sustained CDAI REM through 6/12 months after the first occurrence. 64%/56% of pts randomized to UPA 15 mg with background csDMARD(s) and 61%/56% of pts randomized to UPA 15 mg without background csDMARD(s) achieved sustained CDAI LDA through 6/12 months after the first occurrence (Figure 1). Time to initial clinical REM/LDA did not appear to be associated with sustained disease control. The c-indices (95%CI) for CDAI REM in the UPA 15 mg with background csDMARD(s) and UPA 15 mg without background csDMARD(s) groups were 0.541 (0.47, 0.62) and 0.568 (0.49, 0.65) and that of LDA were 0.521 (0.46, 0.58) and 0.498 (0.43, 0.56), respectively. Through last follow-up visit, 55% of pts receiving UPA 15 mg with background csDMARD(s) and 62% of pts receiving UPA 15 mg without background csDMARD(s) remained in CDAI REM while 72% and 70% of pts remained in CDAI LDA, respectively (Figure 2). Similar results were observed across other disease activity measures (SDAI REM/LDA and DAS28(CRP) <2.6/≤3.2).Conclusion:More than a quarter and more than a half of pts with RA and prior IR to csDMARD(s) receiving UPA with or without background csDMARD therapy achieved sustained clinical REM and LDA, respectively, across disease activity measures. Sustainability of responses appeared comparable among pts receiving UPA with or without background csDMARDs through up to 84 wks.References:[1]EULAR: Smolen JS, et al. Ann Rheum Dis 2017;76:960–977.[2]ACR: Singh et al. Arthritis & Rheumatology Vol. 68, No. 1, January 2016, pp 1–26.Disclosure of Interests: :Arthur Kavanaugh Grant/research support from: Abbott, Amgen, AstraZeneca, BMS, Celgene Corporation, Centocor-Janssen, Pfizer, Roche, UCB – grant/research support, Maya H Buch Grant/research support from: Pfizer, Roche, and UCB, Consultant of: Pfizer; AbbVie; Eli Lilly; Gilead Sciences, Inc.; Merck-Serono; Sandoz; and Sanofi, Bernard Combe Grant/research support from: Novartis, Pfizer, Roche-Chugai, Consultant of: AbbVie; Gilead Sciences, Inc.; Janssen; Eli Lilly and Company; Pfizer; Roche-Chugai; Sanofi, Speakers bureau: Bristol-Myers Squibb; Gilead Sciences, Inc.; Eli Lilly and Company; Merck Sharp & Dohme; Pfizer; Roche-Chugai; UCB, Louis Bessette Grant/research support from: AbbVie, Amgen, Bristol-Myers Squibb, Celgene, Eli Lilly, Janssen, Merck, Novartis, Pfizer, Roche, Sanofi, UCB Pharma, Consultant of: AbbVie, Amgen, Bristol-Myers Squibb, Celgene, Eli Lilly, Janssen, Merck, Novartis, Pfizer, Roche, Sanofi, UCB Pharma, Speakers bureau: AbbVie, Amgen, Bristol-Myers Squibb, Celgene, Eli Lilly, Janssen, Merck, Novartis, Pfizer, Sanofi, In-Ho Song Shareholder of: AbbVie Inc., Employee of: AbbVie Inc., Yanna Song Shareholder of: AbbVie Inc., Employee of: AbbVie Inc., Jessica Suboticki Shareholder of: AbbVie Inc., Employee of: AbbVie Inc., Peter Nash Grant/research support from: AbbVie, Bristol-Myers Squibb, Celgene, Eli Lilly and Company, Gilead, Janssen, MSD, Novartis, Pfizer Inc, Roche, Sanofi, UCB, Consultant of: AbbVie, Bristol-Myers Squibb, Celgene, Eli Lilly, Gilead, Janssen, MSD, Novartis, Pfizer Inc, Roche, Sanofi, UCB, Speakers bureau: AbbVie, Bristol-Myers Squibb, Celgene, Eli Lilly, Gilead, Janssen, MSD, Novartis, Pfizer Inc, Roche, Sanofi, UCB

Disease Damage Accrual and Low Bone Mineral Density in Female Patients with Systemic Lupus Erythematosus

2021 ◽  
pp. 109980042110055
Author(s):  
María Correa-Rodríguez ◽  
Gabriela Pocovi-Gerardino ◽  
José-Luis Callejas-Rubio ◽  
Raquel Ríos-Fernández ◽  
Blanca Rueda-Medina ◽  
...  
Keyword(s):  
Bone Mineral Density ◽  
Systemic Lupus Erythematosus ◽  
Lumbar Spine ◽  
Bone Mass ◽  
Disease Activity ◽  
Lupus Erythematosus ◽  
Mineral Density ◽  
Systemic Lupus ◽  
Damage Accrual ◽  
Disease Damage

Osteoporosis is a common comorbidity in patients with systemic lupus erythematosus (SLE), but the potential contribution of disease-associated factors to bone status in SLE is not well known because the reported risk factors from different studies differ greatly. We aimed to examine frequency of reduced bone mass in women with SLE, and determine their potential associations with disease activity, damage accrual and SLE-related clinical markers. A cross-sectional study including 121 Caucasian pre-menopausal and postmenopausal women was conducted (mean age 49.2 ± 12.4 years). The SLE Disease Activity Index (SLEDAI-2 K) and the SDI Damage Index were used to assess disease activity and disease-related damage, respectively. Bone mineral density (BMD) of the left femoral neck and lumbar spine (L2–L4) were measured by dual-energy X-ray absorptiometry. Ten patients (8.3%) had osteoporosis, 63 (52.1%) patients had osteopenia and 6.8% of women had history of previous fracture. Patients with low bone mass had a significantly higher mean SDI (1.3 ± 1.2 versus 0.7 ± 1.0 p = 0.003). T-score at lumbar spine was inversely correlated with SDI score (r = -0.222, p = 0.014) and complement C3 level ( r = −0.206, p = .024). SDI scores were significantly different between patients with osteoporosis, osteopenia, and normal BMD after adjusting for covariates ( p = .004). There is a high prevalence of low BMD in Caucasian women with SLE, and this status was associated with higher damage accrual scores, supporting that disease damage may itself be a major contributor to the low BMD. Women with SLE with organ damage require regular bone status monitoring to prevent further musculoskeletal damage.

scholarly journals Measures of Rheumatoid Arthritis Disease Activity in Australian Clinical Practice

2011 ◽  
Vol 2011 ◽  
pp. 1-7 ◽  
Author(s):  
Andrew Taylor ◽  
Hanish Bagga
Keyword(s):  
Rheumatoid Arthritis ◽  
Clinical Practice ◽  
Disease Activity ◽  
Disease Process ◽  
Biological Agent ◽  
Rheumatoid Arthritis Disease Activity ◽  
Retrospective Audit ◽  
Rheumatoid Arthritis Disease ◽  
Activity Measures ◽  
Disease Activity Measures

Objectives. To investigate which rheumatoid arthritis (RA) disease activity measures are being collected in patients receiving glucocorticoids, non-biologic or biologic disease-modifying antirheumatic drugs (DMARDs) in Australian rheumatology practice. Methods. A retrospective audit of medical records was conducted from eight rheumatology practices around Australia. Each rheumatologist recruited 30 consecutive eligible patients into the review, 10 of whom must have been receiving a biological agent for rheumatoid arthritis. Disease activity measures and radiographic assessments were collected from each patient's last consultation. For biologic patients, disease activity measures were also collected from when the patient was first initiated on the biological agent. Results. At last consultation, the disease measures that were recorded most often were ESR (89.2%), haemoglobin (87.5%), and CRP (84.2%). DAS28 was infrequently recorded (16.3%). The rate of recording disease activity measures for patients receiving biologic DMARDs decreased over time (mean 27 months). Conclusion. This review has shown inconsistency of RA activity measures being recorded in Australian rheumatology clinical practice. An accurate assessment of the disease process is necessary to effectively target rheumatoid arthritis patients to treat in order to achieve optimal outcomes.

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