7 results on '"E Sowden"'
Search Results
2. Accelerate Clinical Trials in Charcot-Marie-Tooth Disease (ACT-CMT): A Protocol to Address Clinical Trial Readiness in CMT1A
- Author
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Katy Eichinger, Janet E. Sowden, Joshua Burns, Michael P. McDermott, Jeffrey Krischer, John Thornton, Davide Pareyson, Steven S. Scherer, Michael E. Shy, Mary M. Reilly, and David N. Herrmann
- Subjects
Neurology ,Neurology (clinical) - Abstract
With therapeutic trials on the horizon for Charcot-Marie-Tooth type 1A (CMT1A), reliable, valid, and responsive clinical outcome assessments and biomarkers are essential. Accelerate Clinical Trials in CMT (ACT-CMT) is an international study designed to address important gaps in CMT1A clinical trial readiness including the lack of a validated, responsive functional outcome measure for adults, and a lack of validated biomarkers for multicenter application in clinical trials in CMT1A. The primary aims of ACT-CMT include validation of the Charcot-Marie-Tooth Functional Outcome Measure, magnetic resonance imaging of intramuscular fat accumulation as a lower limb motor biomarker, and in-vivo reflectance confocal microscopy of Meissner corpuscle sensory receptor density, a sensory biomarker. Initial studies have indicated that these measures are feasible, reliable and valid. A large prospective, multi-site study is necessary to fully validate and examine the responsiveness of these outcome measures in relation to existing outcomes for use in future clinical trials involving individuals with CMT1A. Two hundred 15 adults with CMT1A are being recruited to participate in this prospective, international, multi-center study. Serial assessments, up to 3 years, are performed and include the CMT-FOM, CMT Exam Score-Rasch, Overall Neuropathy Limitations Scale, CMT-Health Index, as well as nerve conduction studies, and magnetic resonance imaging and Meissner corpuscle biomarkers. Correlations using baseline data will be examined for validity. Longitudinal analyses will document the changes in function, intramuscular fat accumulation, Meissner corpuscle sensory receptor density. Lastly, we will use anchor-based and other statistical methods to determine the minimally clinically important change for these clinical outcome assessments and biomarkers in CMT1A. Reliable, and responsive clinical outcome assessments of function and disease progression biomarkers are urgently needed for application in early and late phase clinical trials in CMT1A. The ACT-CMT study protocol will address this need through the prospective, longitudinal, multicenter examination in unprecedented detail of novel and existing clinical outcome assessments and motor and sensory biomarkers, and enhance international clinical trial infrastructure, training and preparedness for future therapeutic trials in CMT and related neuropathies.
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- 2022
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3. Diagnosing and managing patients with heart failure with preserved ejection fraction: a consensus survey.
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Austin R, Khair E, Blakeman T, Hossain MZ, Sowden E, Chew-Graham C, Forsyth F, and Deaton C
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- Humans, United Kingdom, Surveys and Questionnaires, Primary Health Care, General Practitioners, Attitude of Health Personnel, Secondary Care, Heart Failure diagnosis, Heart Failure therapy, Stroke Volume, Consensus
- Abstract
Aim: As heart failure (HF) with preserved ejection fraction (HFpEF) prevalence increases, it remains frequently underdiagnosed and poorly managed. Recent positive pharmacological trials have increased interest in HFpEF but challenges of diagnosis and management remain. The survey aim was to examine consensus between primary and secondary care providers regarding HFpEF diagnosis and management., Methods: As part of a larger programme of work, survey questions were developed in an online format and piloted with healthcare providers (HCPs). The survey link was distributed via professional networks and social media. Analysis included frequencies of responses, comparison by main professional groups and thematic analysis free-text responses. A virtual workshop of HCPs was conducted to discuss and refine survey findings., Results: HCPs (n=66) across the UK participated: 19 general practitioners (GPs), 20 HF specialist nurses (HFSN), 17 cardiologists and 10 others. Consensus was high (92%) that diagnosing the type of HF was very important and most favoured inclusion of HFpEF in Quality Outcome Framework indicators. No clear consensus was reached that ongoing management should be in primary care (47.5% of GPs, 35% of HFSN and 31.3% of cardiologists 'somewhat agreed'). Opinions differed between GPs (52.3)% and specialists (HFSN 80% and cardiologists 81.3%) for practice nurses to be upskilled and assume HFpEF management. No HCPs reported any level of disagreement for HFSN management of HFpEF. Free-text comments highlighted resource barriers to HFpEF diagnosis and management and confirmed the need to develop better HFpEF services., Conclusions: Consensus was reached regarding importance of diagnosing HFpEF, but agreement on methods and responsibilities for diagnosis and management varied. Free-text comments identified HCPs concerns related to overwhelmed primary and secondary care services and lack of sufficient resources to meet existing patient demands. Creation of collaborative care pathways is needed to support the increasing number of older patients with HFpEF., Trial Registration Number: ClinicalTrials. gov (reference number: NCT03617848)., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY. Published by BMJ Group.)
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- 2024
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4. Cumulative complexity: a qualitative analysis of patients' experiences of living with heart failure with preserved ejection fraction.
- Author
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Forsyth F, Blakeman T, Burt J, Chew-Graham CA, Hossain M, Mant J, Sharpley J, Sowden E, and Deaton C
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- Humans, Stroke Volume, Prognosis, Heart Failure complications
- Abstract
Aims: To investigate how heart failure with preserved ejection fraction (HFpEF), within the context of limited clinical services, impacts patients' lives., Methods and Results: Secondary thematic analysis informed by the cumulative complexity model (CCM), of interview transcripts from 77 people diagnosed with HFpEF and their carers. Four themes corresponding to the core concepts of workload, capacity, access, and outcome described in the CCM were generated. Theme 1: Shouldering a heavy workload described the many tasks expected of people living with HFpEF. Theme 2: The multiple threats to capacity described how patients and carers strived to engage with this work, but were often faced with multiple threats such as symptoms and mobility limitations. Deficient illness identity (Theme 3) reflects how HFpEF either was not recognized or was perceived as a more benign form of HF and therefore afforded less importance or priority. These themes contributed to a range of negative physical, social, and psychological outcomes and the perception of loss of control described in Theme 4: Spiraling complexity., Conclusions: The constellation of HFpEF, multi-morbidity, and ageing creates many demands that people with HFpEF are expected to manage. Concurrently, the same syndromes threaten their ability to physically enact this work. Patients' recollections of their interactions with health professionals suggest that there is a widespread misunderstanding of HFpEF, which can prohibit access to care that could potentially reduce or prevent deterioration., Competing Interests: Conflicts of interest: J.M. has done consultancy work for BMS/Pfizer and Omron. C.D. has consulted for Astra Zeneca. All other authors declare no conflicts of interest., (© The Author(s) 2022. Published by Oxford University Press on behalf of the European Society of Cardiology.)
- Published
- 2023
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5. Understanding the support needs of parents of children with obsessive-compulsive disorder: a qualitative descriptive study in the UK.
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Sowden E, Robinson D, Lovell K, Bee P, Fulwood A, Lidbetter N, Wilson Z, Brown A, and Pedley R
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- Humans, Child, Adolescent, Parents psychology, Qualitative Research, United Kingdom, Quality of Life, Obsessive-Compulsive Disorder therapy, Obsessive-Compulsive Disorder psychology
- Abstract
Introduction: Caring for a child with obsessive-compulsive disorder (OCD) can be extremely difficult, yet evidence-based support strategies for parents/carers are limited. A detailed understanding of parent support needs is an important first step in intervention development and qualitative research with this focus is currently lacking. In this study, the viewpoints of parents and professionals were used to understand support needs and preferences when caring for a child with OCD. This qualitative descriptive study formed part of a wider UK-based project aimed at developing better support for parents of children with OCD., Method: Individual semi-structured interviews (and an optional one-week journal) with a purposive sample of parents of children and young people (CYP) with OCD, aged 8-18, and focus groups (or individual interviews where preferred) with a purposive sample of professionals supporting CYP with OCD. Data comprised transcripts of audio-recorded interviews and focus groups, and text from journals. Analysis was informed by the Framework approach involving inductive and deductive coding, supported by NVivo 12.0 software. Co-production methods were adopted throughout the research process, including the involvement of a parent co-researcher and charity collaborators., Results: Interviews were undertaken with 20 parents, of which 16 completed a journal. Twenty-five professionals took part in a focus group or interview. Five key themes relating to parent support challenges and support needs/preferences were identified (1) Coping with the impact of OCD; (2) Getting help for my child; (3) Understanding parents' role; (4) Making sense of OCD; (5) Joined-up care., Conclusion: Parents caring for children with OCD have clear caregiver support needs which are currently not being met. Through triangulation of parent and professional accounts, this study has identified parent support challenges (e.g., emotional impact of OCD, visibility of caring role, misunderstanding about OCD) and support needs/ preferences (e.g., headspace/respite, compassion/sensitivity, guidance on accommodation) to lay the vital foundations for the development of effective parent support interventions. There is now an urgent need to develop and test an intervention to support parents in their caregiving role, with the aim of preventing and/or reducing their levels of burden and distress and ultimately, improving their quality of life., (© 2023. The Author(s).)
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- 2023
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6. 'Keeping the plates spinning': a qualitative study of the complexity, barriers, and facilitators to caregiving in heart failure with preserved ejection fraction.
- Author
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Pearson CR, Forsyth F, Khair E, Sowden E, Borja Boluda S, and Deaton C
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- Humans, Stroke Volume, Qualitative Research, Health Personnel, Caregivers, Heart Failure
- Abstract
Aims: Heart failure with preserved ejection fraction (HFpEF) accounts for 50% of all heart failure cases; yet remains poorly understood, diagnosed, and managed, which adds complexity to the carer role. No study to date has investigated the experiences of informal carers of people with HFpEF. The aim of this study was to explore the role and experiences of informal carers of people with HFpEF., Methods and Results: A qualitative study using semi-structured interviews involving carers alone, patients alone, or carer/patient dyads. The interviews were part of a larger programme of research in HFpEF. Participants were recruited from three regions of England. Interviews were recorded, transcribed verbatim, and analysed thematically. Twenty-two interviews were conducted with 38 participants, 17 were informal carers. Three inter-related themes were identified: Theme 1, the complex nature of informal caregiving ('spinning plates'); Theme 2, the barriers to caregiving ('the spinning falters'); and Theme 3, the facilitators of caregiving ('keeping the plates spinning')., Conclusions: Informal carers play an important role in supporting people with HFpEF. The experience of caregiving in HFpEF is similar to that described for Heart Failure with reduced Ejection Fraction, but complicated by challenges of limited information and support specific to HFpEF, and high burden of multi-morbidity. Healthcare providers should assess the needs of informal carers as part of patient care in HFpEF. Carers and patients would benefit from improved information and co-ordinated management of HFpEF and multi-morbidities. Helping carers 'keep the plates spinning' will require innovative approaches and co-ordination across the care continuum., Competing Interests: Conflict of interest: none declared., (© The Author(s) 2022. Published by Oxford University Press on behalf of the European Society of Cardiology.)
- Published
- 2023
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7. Challenges in the management of people with heart failure with preserved ejection fraction (HFpEF) in primary care: A qualitative study of general practitioner perspectives.
- Author
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Hossain MZ, Chew-Graham CA, Sowden E, Blakeman T, Wellwood I, Tierney S, and Deaton C
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- Attitude of Health Personnel, Ethnicity, Humans, Minority Groups, Primary Health Care, Qualitative Research, Stroke Volume, General Practitioners, Heart Failure therapy
- Abstract
Objectives: To explore the perspectives of general practitioners (GPs) on the identification and management of people, including those from ethnic minority groups, with Heart Failure with Preserved Ejection Fraction (HFpEF)., Methods: Qualitative study. Semi-structured, face-to-face or telephone interviews and focus groups were conducted with 35 GPs in England, which were audio-recorded and transcribed verbatim. Framework analysis was used to manage and interpret data., Results: Themes presented reflect four inter-related challenges: GPs' 1) lack of understanding HFpEF, impacting on 2) difficulties in communicating the diagnosis, leading to 3) uncertainty in managing people with HFpEF, further hindered by (4) discontinuity across the primary/secondary interface. All were considered more challenging by GPs when managing people from different cultures and languages., Discussion: HFpEF is not well understood by GPs, leading to diagnostic difficulty, management uncertainty and potential inequity in care offered. People with HFpEF are seen as complex, with multiple long-term conditions and requiring personalised care. Challenges in their management occur across the healthcare system. This study has identified learning needs for GPs around identification and on-going support for people with HFpEF in primary care. It will contribute to the development of more flexible and patient-centred pathways across the primary/secondary care interface.
- Published
- 2022
- Full Text
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