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"Osborne, Genevieve"
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Impact of glucocorticoids on patients’ quality of life: a qualitative study assessing face validity and feasibility of the Steroid PRO in patients with inflammatory gastroenterology, respiratory and dermatology conditions
2025
ObjectivesThe Steroid PRO is a treatment-specific patient-reported outcome questionnaire which measures the impact of glucocorticoids on health-related quality of life. It has 15 items grouped into 4 domains (Social impact, Impact on Appearance, Psychological Impact and Treatment Concerns). Initially developed and validated in rheumatic diseases, the Steroid PRO demonstrates potential for broader application in patients with other inflammatory conditions. The objective of this study was to assess face validity, content validity and feasibility of the Steroid PRO in (1) patients treated with glucocorticoids for inflammatory respiratory, dermatological and gastroenterological conditions and (2) clinicians working within these specialties in the UK and USA.DesignQualitative study with semistructured cognitive interview methods.SettingOnline or face-to-face interviews with participants from seven departments across three secondary care hospitals in the UK and USA.ParticipantsInclusion criteria: (1) Adult patients with inflammatory respiratory, gastroenterological and dermatological conditions treated with glucocorticoids and (2) healthcare professionals (HCPs) working in respiratory, dermatology and gastroenterology departments in the UK and USA.ResultsPurposive sampling to ensure a range of patient and HCP participants. A total of 42 patient participants were recruited, from respiratory/pulmonology (n=14, 33.3%), dermatology (n=13, 31.0%) and gastroenterology (n=15, 35.8%) medical departments; 32 in the UK and 10 from the USA. Mean age 48.2 years (range 22–71) and 19 (45.2%) were female. Patient participants had a range of inflammatory lung, skin and bowel conditions, with a spectrum of demographics and patterns of glucocorticoid use. 14 HCPs participated from the UK (9) and USA (5). Face validity: 97% (30/31) patients and 100% (14/14) HCPs reported the Steroid PRO was ‘relevant or very relevant’ to them and their disease. Feasibility: 97% (30/31) patients and 100% (14/14) HCPs reported the Steroid PRO was ‘easy or very easy to complete’. Patients reported that the four domains of the Steroid PRO had relevance to them and that it was validating to see their concerns represented: ‘It’s obvious you guys know what you’re talking about—these are my issues. It’s very validating when you realise it’s not just you. These problems are real and they matter.… These are not questions my doctor asks me about. Doctors never ask about psychosocial aspects. It would be really great if they used this’ (female patient with asthma). Patients and clinicians felt the Steroid PRO would be suitable for use in clinical practice within their specialties and would aid in understanding of the impact of glucocorticoids.ConclusionsThe Steroid PRO demonstrated face validity and content validity for assessing the impact of glucocorticoids in patients with inflammatory respiratory, gastroenterological and dermatological conditions. Additionally, the feasibility of using the Steroid PRO with both patients and HCPs has been established. Future work should include quantitative testing of the Steroid PRO as an outcome measure within clinical trials in these conditions.Trial registration numberNCT06314451.
Journal Article
Gestational trophoblastic disease: an update
by
Hack, Kalesha
,
Chawla, Tanya
,
Turashvili, Gulisa
in
Chemotherapy
,
Computed tomography
,
Diagnosis
2023
Gestational trophoblastic diseases (GTD) encompass a spectrum of rare pre-malignant and malignant entities originating from trophoblastic tissue. This updated review will highlight important radiological features, pathology and classification, and provide insight into the clinical management of these uncommon disorders. There is a wide geographic variation with the incidence of hydatidiform mole varying between 0.57 and 2 per 1000 pregnancies. The use of ultrasound (US) in the management of early pregnancy symptoms and complications has positively impacted the earlier detection of these diseases and resulted in diminished morbidity. Additional imaging modalities are reserved for problem solving or assessment of pulmonary manifestations of molar pregnancy. Having an awareness of their pleomorphic sonographic presentation and additional pathology that can mimic GTD is critical to avoiding pitfalls. Histologic and molecular analysis further aids in differential diagnosis. Gestational trophoblastic neoplasia (GTN) is inclusive of all malignant GTDs, and arises after 20% of molar pregnancies but can also be seen with non-molar gestations. Biochemical monitoring with human chorionic gonadotrophin is imperative for ongoing monitoring and surveillance and allows early detection of this entity. Doppler US is used for confirmation of diagnosis with magnetic resonance imaging (MRI) reserved for problem solving or assessment of myometrial invasion. This is of heightened relevance in patients undergoing surgical management. Cross sectional imaging is reserved for patients in the setting of GTN for the purposes of staging, prognostication and in the setting of recurrent disease. This may require a combination of computed tomography, MRI and positron emission tomography. Doppler US can provide insight into chemotherapeutic response/predict resistance in patients with GTN. As our understanding of these disorders evolves, there has been maturation in management options with a shift from traditional chemotherapy to innovative immunotherapy, particularly in the setting of resistant or high-risk disease.
Journal Article
Transplantation of human neural progenitor cells secreting GDNF into the spinal cord of patients with ALS: a phase 1/2a trial
by
Manoukian, Vicki
,
Avalos, Pablo
,
Stokes, Haniah
in
631/378/1689/1285
,
692/699/375/365/1917/1285
,
Amyotrophic lateral sclerosis
2022
Amyotrophic lateral sclerosis (ALS) involves progressive motor neuron loss, leading to paralysis and death typically within 3–5 years of diagnosis. Dysfunctional astrocytes may contribute to disease and glial cell line-derived neurotrophic factor (GDNF) can be protective. Here we show that human neural progenitor cells transduced with GDNF (CNS10-NPC-GDNF) differentiated to astrocytes protected spinal motor neurons and were safe in animal models. CNS10-NPC-GDNF were transplanted unilaterally into the lumbar spinal cord of 18 ALS participants in a phase 1/2a study (NCT02943850). The primary endpoint of safety at 1 year was met, with no negative effect of the transplant on motor function in the treated leg compared with the untreated leg. Tissue analysis of 13 participants who died of disease progression showed graft survival and GDNF production. Benign neuromas near delivery sites were common incidental findings at post-mortem. This study shows that one administration of engineered neural progenitors can provide new support cells and GDNF delivery to the ALS patient spinal cord for up to 42 months post-transplantation.
A phase 1/2a study shows that human neural progenitor cells modified to release the growth factor GDNF are safely transplanted into the spinal cord of patients with ALS, with cell survival and GDNF production for over 3 years.
Journal Article
Flexible learning: Evaluation of an international distance education programme designed to build the learning and teaching capacity of nurse academics in a developing country
by
Nielson, Catherine M.
,
Gray, Genevieve
,
Lewis, Peter A.
in
Academic staff
,
Capacity building approach
,
Clinical Teaching (Health Professions)
2016
The professional development of nurse academics has been high on the agenda in many of the Asia-Pacific's developing countries including Vietnam. In collaboration with the Vietnamese Nurses Association, an Australian university designed and delivered a distance learning programme (DLP). The DLP sought to build academic capacity with a specific focus on the skills required to develop, implement and deliver a new national nursing curriculum. This paper will describe the design and delivery of the DLP as well as report on programme evaluation survey findings. Of the 175 surveys administered 112 were returned yielding a response rate of 64%. The majority of Vietnamese nurse academics identified all DLP modules as ‘very well’ designed and easy to learn from (range 63.9%–84.2%). Predominantly, academics also found the module content to be ‘of great use’ to their professional practice (range 73%–89.5%). Asked specifically about the benefit of the DLP online discussions, 106 (95.5%) participants stated they found the online discussions to be of use. An explanatory comment was also requested to explore this question and responses yielded three themes: ‘networking and collaboration’; ‘acquiring new knowledge’; and ‘improving English’. When asked if they had changed their academic practice as a result of DLP participation, 105 (94.6%) academics stated they had – change was focussed on student centred learning and building a staff community of practice. While these study results indicate the DLP to be successful, it will be how Vietnamese academics utilise and build these skills which will measure the real success of the programme in the future.
•International programme develops Vietnamese nurse academic capacity.•Vietnamese nurse academics adopt change-management in teaching.•Vietnamese nurse academics take student centric focus.•Online discussion forums assist development of national community of practice.
Journal Article
Responsible Generative AI Use by Product Managers: Recoupling Ethical Principles and Practices
by
Lattimore, Brian
,
Nonnecke, Brandie
,
Luka, Natalia
in
Decision making
,
Ethics
,
Generative artificial intelligence
2025
Since 2022, generative AI (genAI) has rapidly become integrated into workplaces. Though organizations have made commitments to use this technology \"responsibly\", how organizations and their employees prioritize responsibility in their decision-making remains absent from extant management theorizing. In this paper, we examine how product managers - who often serve as gatekeepers in decision-making processes - implement responsible practices in their day-to-day work when using genAI. Using Institutional Theory, we illuminate the factors that constrain or support proactive responsible development and usage of genAI technologies. We employ a mixed methods research design, drawing on 25 interviews with product managers and a global survey of 300 respondents in product management-related roles. The majority of our respondents report (1) widespread uncertainty regarding what \"responsibility\" means or looks like, (2) diffused responsibility given assumed ethical actions by other teams, (3) lack of clear incentives and guidance within organizations, and (4) the importance of leadership buy-in and principles for navigating tensions between ethical commitments and profit motives. However, our study finds that even in highly uncertain environments, absent guidance from leadership, product managers can \"recouple\" ethical commitments and practices by finding responsibility \"micro-moments\". Product managers seek out low-risk, small-scale actions they can take without explicit buy-in from higher-level managers, such as individual or team-wide checks and reviews and safeguarding standards for data. Our research highlights how genAI poses unique challenges to organizations trying to couple ethical principles and daily practices and the role that middle-level management can play in recoupling the two.
Historic Canberra bookshop Smith's Alternative saved from permanent closure; An iconic Canberra bookshop and live music venue is saved from closure, after being placed into liquidation last month
2015
\"I've been putting shows on there every Wednesday, and I was aware it wasn't exactly doing very well,\" he said. \"But they weren't able to capitalise on the daytime trade. I'm really hoping that I'm going to be able to get it working as a daytime cafe... a meeting space,\" he said. \"Certainly the books, the poetry, the events, the music... they're the sort of things that were bring people back to [Smith]'s, and keep it underground, keep it in your face, keep it challenging,\" he said.
Newspaper Article
Govt seizes on Thomson jailing
2014
\"Unfortunately what I've seen in the union movement is this is commonplace,\" he said outside court following [Craig Thomson]'s sentence.
Newspaper Article