International Online Community Research Articles

Further psychometric validation and test-retest reproducibility of the WOUND-Q.

WOUND-Q is a condition-specific patient-reported outcome measure developed for all types of chronic wounds, located anywhere on the body. To establish reliability and validity of a patient-reported outcome measure, multiple pieces of evidence are required. The purpose of this study was to examine the measurement properties of 9 of the 13 WOUND-Q scales and perform a test-retest reproducibility study in an international sample. In August 2022, we invited members of an international online community (Prolific.com) with any type of chronic wound to complete a survey containing the WOUND-Q scales, the Wound-QoL and EQ-5D. A test-retest survey was performed 7 days after the first survey. It was possible to examine the reliability and validity of eight of the nine WOUND-Q scales by Rasch Measurement Theory (RMT). To examine test-retest reproducibility intraclass correlation coefficients (ICCs), the standard error of the measurement and the smallest detectable change were calculated. In total, 421 patients from 22 different countries with 11 different types of chronic wounds took part in this study. Our analyses provided further evidence of the reliability and validity of the scales measuring wound characteristics (assessment, drainage, smell), health-related quality of life (life impact, psychological, sleep, social) and wound treatment (dressing).

Digital Technologies for the Assessment of Oral English Skills

The assessment of oral skills in the learning process of a foreign language is very important for promoting the improvement of these competences. Furthermore, digital tools can be useful for making this task easier for teachers and promoting their collaboration based on professional online communities. In this article, we present the AROSE platform, a new digital tool developed to help secondary education teachers assess their students’ oral skills in English as a foreign language. To evaluate this platform, we have promoted an international online community of secondary education teachers in a project funded by the Erasmus+ programme. The research has been developed using a design-based research methodology. Three different iterations of the platform design process were carried out. We have used a mixed method combining focus groups (of both teachers and experts), observation forms, and questionnaires for teachers. The main results obtained demonstrate the need among teachers to integrate technology to improve the evaluation process. The AROSE platform successfully caters to this need, as demonstrated by the significant data on the use and satisfaction of its users.

Cyber Divided: How Taiwanese International Students Make Identity Boundaries within Social Network Sites

Cyberspace has become a fixture of contemporary higher education institutions. When facing challenges seeking admission to a foreign university, international students often resort to online resources for guidance. By engaging in these online activities, international students develop a sense of community and identity. Despite recent advancement, existing studies on digital space and international students often fail to address the contentious nature of the community-forming process. Using digital ethnography and interviews, I studied an online forum for Taiwanese international students, STUDYABROAD, to delineate how social networking sites (SNSs) help reinforce group boundaries relating to different class traits and individual characteristics. International students find support and reassurance by socializing with netizen members and learning essential knowledge and information, but they also learn to distinguish different personalities and associate with them based on how they are perceived. By describing how Taiwanese students interpret online forums and develop norms around those communities, this study contributes to a growing strand of research into socialization of the international online community.

Hidradenitis Suppurativa International Online Community: Patient Characteristics and a Novel Model of Treatment Effectiveness.

Treatment for hidradenitis suppurativa is diverse, yet frequently unsatisfactory. The aims of this study were to create a reproducible artificial intelligence-based patient-reported outcome platform for evaluation of the clinical characteristics and comorbidities of patients with hidradenitis suppurativa, and to use this to grade treatment effectiveness. A retrospective patient-reported outcome study was conducted, based on online questionnaires completed by English-speaking patients registered to the hidradenitis suppurativa Stuff-ThatWorks® online community. Data collected included patient characteristics, comorbidities and treatment satisfaction. These were recoded into scalable labels using a combination of machine learning algorithm, manual coding and validation. A model of treatment effectiveness was generated. The cohort included 1,050 patients of mean ± standard deviation age 34.3 ± 10.3 years. Greater severity of hidradenitis suppurativa was associated with younger age at onset (p < 0.001) and male sex (p < 0.001). The most frequent comorbidities were depression (30%), anxiety (26.4%), and polycystic ovary syndrome (16.6%). Hurley stage I patients rated topical agents, dietary changes, turmeric, and pain relief measures more effective than tetracyclines. For Hurley stage II, adalimumab was rated most effective. For Hurley stage III, adalimumab, other biologic agents, systemic steroids, and surgical treatment were rated more effective than tetracyclines. Patients with hidradenitis suppurativa often have comorbid psychiatric and endocrine diseases. This model of treatment effectiveness provides a direct comparison of standard and complementary options.

Patients’ experiences of self-identification, seeking support, and anticipation of potential relapse in multiple sclerosis

BackgroundMultiple sclerosis (MS) relapses are associated with increased disability, reduced quality of life and negative psychosocial impacts. However, they often go unrecognised; people with MS (MSers) may face barriers to self-identification of relapses or seeking support for them. The charity Shift.ms sought to better understand 1) MSers’ challenges in self-identifying potential relapses, 2) where MSers’ seek support for potential relapses, and 3) the impact of the anticipation of relapses on MSers’ wellbeing and daily living. MethodsShift.ms developed a patient perspective 8-question pilot survey (included likert-style, multiple-choice, and optional free-text responses) and shared it with Shift.ms’ international online community (n = 20,052). Descriptive quantitative analysis, and content analysis and thematic analysis of qualitative free-text responses were used. Results1,737 MSers responded. Just under one third (29.9%) of MSers reported that it takes them 24 h or less to self-identify a potential relapse, while more than half (54.5%) reported that identification occurs within 48 h; 55% MSers felt that the “at least 24 h” clinical criterion of relapse classification was appropriate. Challenges to relapse self-identification included confounding background symptoms or infection, variability of relapse symptoms, and individualistic nature of MS. Fatigue was reported to be the most common symptom of relapse (75%), however fatigue was also the symptom most commonly mistaken for relapse (40%). Barriers to relapse self-identification were a shorter duration since MS diagnosis and a perceived lack of consensus around relapse classification. Respondents reported they most often seek relapse support/advice from healthcare professionals (HCPs) (37.1%), family/friends (32.1%), or not at all (16.9%). Rather than temporal criteria (i.e. the 24 h criterion), participants felt that severity of symptoms could play a more critical role in whether to seek support for a potential relapse. Barriers to seeking support/advice included variability in HCP advice and feelings of invalidation. Anticipation of relapses negatively impacted MSers wellbeing; led to reduced participation in activities, and the development of adjustment/coping strategies. Relapse triggers included stress, reduced self-care, infection/illness; 78.5% reported stress or anxiety had triggered relapse. ConclusionsThese findings highlight difficulties MSers face in self-identifying relapses, barriers to accessing support, and impact of anticipation of relapses. They also highlight opportunities for improved MSer and HCP communication, dialogue and two-way education to help optimise patient access to relapse support and intervention.

Perspective of an International Online Patient and Caregiver Community on the Burden of Spasticity and Impact of Botulinum Neurotoxin Therapy: Survey Study.

BackgroundPatient- and caregiver-reported data are lacking on the burden of spasticity, and the impact of botulinum neurotoxin type A (BoNT-A) treatment for this condition, on patients' daily lives. As recommended in recent guidance from the US Food and Drug Administration, online patient communities can represent a platform from which to gather specific information outside of a clinical trial setting on the burden of conditions experienced by patients and caregivers and their views on treatment options in order to inform evidence-based medicine and drug development.ObjectiveThe objective of our study is to characterize spasticity symptoms and their associated burdens on Western European and US patients and caregivers in the realms of work, daily activities, quality of life (QoL), as well as the positive and negative impacts of treatment with BoNT-A (cost, time, QoL) using Carenity, an international online community for people with chronic health conditions.MethodsWe performed a noninterventional, multinational survey. Eligible participants were 18 years old or older and had, or had cared for, someone with spasticity who had been treated with BoNT-A for at least 1 year. Patients and caregivers were asked to complete an internet-based survey via Carenity; caregivers reported their own answers and answered on behalf of their patients. Questions included the burden of spasticity on the ability to work, functioning, daily-living activities, and QoL, the impact of BoNT A therapy on patients' lives, and the potential benefits of fewer injections.ResultsThere were 615 respondents (427 patients and 188 caregivers). The mean age of patients and caregivers was 41.7 years and 38.6 years, respectively, and the most commonly reported cause of spasticity was multiple sclerosis. Caregivers were most often the parents (76/188, 40%) or another family member (51/188, 27%) of their patients. Spasticity had a clear impact on patients' and caregivers' lives, including the ability to work and injection costs. For patients, spasticity caused difficulties with activities of daily living and reduced QoL indices. The median number of BoNT-A injections was 4 times per year, and 92% (393/427) of patients reported that treatment improved their overall satisfaction with life. Regarding the BoNT-A injection burden, the greatest patient-reported challenges were the cost and availability of timely appointments. Overall, 86% (368/427) of patients believed that a reduced injection frequency would be beneficial. Caregivers answering for their patients gave largely similar responses to those reported by patients.ConclusionsSpasticity has a negative impact on both patients' and caregivers' lives. All respondents reported that BoNT A treatment improved their lives, despite the associated challenges. Patients believed that reducing the frequency of BoNT-A injections could alleviate practical issues associated with treatment, implying that a longer-acting BoNT-A injection would be well received.

Exploring the social lives of image and performance enhancing drugs: An online ethnography of the Zyzz fandom of recreational bodybuilders

BackgroundAs a result of the mainstreaming of bodybuilding, the majority of image and performance enhancing drug (IPED) users are now not athletes or competitive bodybuilders, but recreational bodybuilders. Previous approaches provide little insight into how the shift from competitive to recreational contexts impacts the use of IPEDs. MethodsIn this study an online ethnographic approach is used to explore the social lives of IPEDs in a recreational context. The study focusses on the Zyzz fandom, an international online community of thousands of recreational bodybuilders who idolise the alleged IPED user Zyzz. ResultsZyzz fans see IPED prohibition as failing, as causing harm to users, and as sexist. Their IPED use is informed by not only instrumental benefits, but social benefits such as altering gendered power relations. IPEDs have been normalised in this community, and new patterns of use are emerging. ConclusionIPEDS have moved through different hands, contexts and uses, and in so doing the values, norms and meanings attached to IPEDs have changed. The results suggest that intervention efforts may be best directed towards harm minimisation, and in particular towards bridging the divides between the medical and bodybuilding communities.

P5.049 Creating Online Communities of Practise to Support Uptake and Sustainability of Evidence-Based HIV/STI Prevention Programmes

BackgroundOnline communities of practise have the potential to address multiple barriers to the broader dissemination and maintenance of evidence-based HIV/STI interventions. Addressing these barriers is critical to narrowing the gap...

COMMUNEcating in the Spaces In-Between

This essay describes the authors' efforts to engage disciplinary calls for greater diversity through the construction of an international online community and conference, COMMUNEcation. They describe the commitments and goals of the community and conference, the construction of the COMMUNEcating space, and their encounters with disciplinary, geographically, and linguistically diverse scholars in their mutual exploration of global and organizing practices in their local contexts. The conference contributions and conversations prompted the authors to ask three salient questions around scholarly understandings of the Other and Othering practices of organizing and communicating across the globe—Where is the Other? Who is the Other? and What is the Other? The second half of the essay discusses these questions in detail and concludes with the authors' reflections on creating “spaces inbetween” through technology and an introduction to the multiauthored collaborative essay and conference product from the Scholars of the COMMUNEcation Network that follows.

Orchestrating interdependence in an international online learning community

AbstractThis paper focuses on research into the student experience as participants in the development of an international online community. The background context for this is an international master’s programme and the specific context for the research is a module on Digital Media Applications (DMA), which are outlined. The programme design emphasises peer and formative assessment practices and the pedagogical approach aims to foster group collaboration in international teams. Following an overview of the research methods adopted, a number of emergent themes from the data analysis of student diaries are discussed, including issues of language, culture and identity. In conclusion, we offer some reflections on these issues and discuss the underpinning assumptions (in relation to assessment practices in particular) that have given direction to our subsequent ongoing research and development.