Article
Respiratory System
Donna Goodridge, Britney Duncan, Katherine Cowan, Sarah Fang, Mark Fenton, Dave Parkalub, Jaimie Peters, Robert Skomro, Candace Skrapek, Kendra Ulmer
Summary: This study surveyed the research priorities of patients with obstructive sleep apnoea (OSA), their family members, and clinicians. The top 10 research priorities were identified through a series of surveys and workshops. The results will help align the efforts of funders, researchers, and policy-makers with stakeholder priorities related to OSA.
Article
Health Care Sciences & Services
Adine Adonis, Anne-Marie Russell, Graham P. Taylor, Melanie Preston, Alpheus Shields, Sue Strachan, Sky Young, Haissata Diallo, Stephen Ashford, Elizabeth Cassidy
Summary: This study reports on patient involvement workshops aimed at identifying research priorities for HTLV-1 health service provision. The top research priorities identified were understanding disease progression, psychosocial wellbeing, and information and knowledge. Participants viewed the workshops as the start of a conversation to progress person-centred and meaningful research in HTLV-1.
HEALTH EXPECTATIONS
(2023)
Article
Oncology
O. Husson, C. Drabbe, K. Schuster, P. van Kampen, C. Koops, M. Weidema, R. Davidson, M. Wartenberg, E. Artzner, O. Gonzato, N. Fernandez, B. Kasper, K. Pilgermann, R. Wilson, W. T. A. van der Graaf, G. van Oortmerssen
Summary: Traditionally, sarcoma research has been focused on scientists and clinicians, but there is now a growing desire for patients to be involved. This study aims to identify unanswered questions and explore patient and caregiver involvement in sarcoma research. The survey revealed that sarcoma patients and caregivers are willing to actively participate, particularly in sharing perspectives, discussing patient-clinician interactions, and attending research meetings.
Article
Oncology
O. Husson, C. Drabbe, K. Schuster, P. van Kampen, C. Koops, M. Weidema, R. Davidson, M. Wartenberg, E. Artzner, O. Gonzato, N. Fernandez, B. Kasper, K. Pilgermann, R. Wilson, W. T. A. van der Graaf, G. van Oortmerssen
Summary: This study aimed to identify unanswered questions about sarcomas from patient, carer, and clinical perspectives and examine how they want to be involved in sarcoma research. Results showed that the majority of patients and carers were willing to actively participate, particularly in sharing perspectives, discussing patient-clinician interactions, and attending research meetings.
Article
Medicine, General & Internal
Hollie Richards, Robert Staruch, Anni King, Catrin Pugh, Suzannah Kinsella, Jelena Savovic, Amber Young
Summary: This project aims to identify the top 10 research priorities in global burns care, important to international patients, carers, and clinicians. Candidate research priorities will be collected through surveys and interviews, and a consensus meeting will be held to determine the final priorities. The research prioritisation ensures that funding is allocated to areas with the greatest need in burn care, including the perspectives of professionals and patients from lower income countries.
Article
Respiratory System
Linzy Houchen-Wolloff, Krisnah Poinasamy, Kate Holmes, Maryrose Tarpey, Claire Hastie, Kelly Raihani, Natalie Rogers, Nikki Smith, Dawn Adams, Paul Burgess, Jean Clark, Clare Cranage, Mahadev Desai, Nicola Geary, Rhyan Gill, Jitendra Mangwani, Lily Staunton, Colin Berry, Charlotte E. Bolton, Trudie Chalder, James Chalmers, Anthony De Soyza, Omer Elneima, John Geddes, Simon Heller, Ling-Pei Ho, Joseph Jacob, Hamish McAuley, Aarti Parmar, Jennifer K. Quint, Betty Raman, Matthew Rowland, Amisha Singapuri, Sally J. Singh, David Thomas, Mark R. Toshner, Louise Wain, Alex Robert Horsley, Michael Marks, Christopher E. Brightling, Rachael A. Evans
Summary: Given the large numbers of people infected and high rates of ongoing morbidity, it is necessary to conduct research to address the needs of adult survivors of COVID-19 living with ongoing symptoms (long COVID). A research prioritisation process was completed, incorporating views from adults with ongoing symptoms of COVID-19, carers, clinicians, and clinical researchers, to direct resource and research efforts. The top 10 research questions, identified through an independently mediated workshop, include understanding the underlying mechanisms, developing diagnostic tools, investigating the trajectory of recovery, and evaluating interventions during acute and persistent phases of the illness.
Article
Medicine, General & Internal
Katie Evans, Cheryl Battersby, James P. Boardman, Elaine M. Boyle, William D. Carroll, Kate Dinwiddy, Jon Dorling, Katie Gallagher, Pollyanna Hardy, Emma Johnston, Helen Mactier, Claire Marcroft, James Webbe, Chris Gale
Summary: This study aims to identify and prioritize research questions that can be answered in clinical trials within the National Healthcare System, using a robust and transparent process involving a wide range of stakeholders.
Article
Pediatrics
Katie Evans, Cheryl Battersby, James P. Boardman, Elaine Boyle, Will Carroll, Kate Dinwiddy, Jon Dorling, Katie Gallagher, Pollyanna Hardy, Emma Johnston, Helen Mactier, Claire Marcroft, James William Harrison Webbe, Chris Gale
Summary: The study aimed to involve a wide range of stakeholders to identify and prioritize research questions suitable for neonatal interventional trials in the UK. Five research questions related to breast milk fortification, intact cord resuscitation, timing of surgical intervention in necrotising enterocolitis, therapeutic hypothermia for mild hypoxic ischaemic encephalopathy, and non-invasive respiratory support were identified as the top priorities.
ARCHIVES OF DISEASE IN CHILDHOOD-FETAL AND NEONATAL EDITION
(2023)
Article
Psychiatry
Julia M. A. Sinclair, Betul Aslan, Roberta Agabio, Amith Anilkumar, Mark Brosnan, Ed Day, Nicki A. Dowling, Chelsey Flood, Jon E. Grant, Robyn Halliday, Bjorn Hofvander, Leesa Howes, Rachel Moseley, Bronwyn Myers, Vincent O'Connor, Gabriel Shaya, Shane Thomas, Janine Robinson, Samuel R. Chamberlain
Summary: Autistic individuals are more prone to problematic alcohol and substance use compared to the general population. Research shows that around one in three autistic adults may have an alcohol or substance use disorder, while the evidence for behavioral addictions is less clear. Substance use and addictive behaviors may be used by autistic individuals as a way to cope with social anxiety and challenges. However, the lack of literature on the intersection between autism and these conditions hinders progress in health policy, research, and clinical practice.
COMPREHENSIVE PSYCHIATRY
(2023)
Article
Health Care Sciences & Services
Faith Gibson, Lorna A. Fern, Bob Phillips, Helen Gravestock, Sonia Malik, Amy Callaghan, Karen Dyker, Mike Groszmann, Leila Hamrang, Rachael Hough, Demi McGeachy, Sue Morgan, Sam Smith, Sheela Upadhyaya, Helen Veitch, Max Williamson, Jeremy Whelan, Susie Aldiss
Summary: The study identified the top 10 research questions in the field of young people's cancer, and analyzed some out-of-scope questions. The results highlight significant improvement opportunities in service customization, information needs, and communication, calling for specialized care for young people and promoting research priorities.
HEALTH EXPECTATIONS
(2021)
Article
Pediatrics
Georgina Tiller, William D. Renton, Joachim Tan, Samuel Whittle, Jodie Avery, Jane Munro, Rachelle Buchbinder
Summary: This study investigated the priority questions regarding JIA management among Australian pediatric rheumatologists and found strong support for the development of Australian living guidelines for JIA. The highest ranked topics include down-titration and discontinuation of disease modifying anti-rheumatic drugs, best outcome measures, and treatment targets in JIA.
PEDIATRIC RHEUMATOLOGY
(2022)
Article
Clinical Neurology
Dana Wong, Joanne Steel, Katharine Baker, Emmah Doig
Summary: Communities of practice, such as BRAINSPaN, can promote knowledge sharing and translation in the brain impairment field. Survey results show that members mainly participate in BRAINSPaN to access new research findings and increase interaction with others, with cognitive rehabilitation and behaviour management being the most frequently reported practice domains of interest.
Article
Public, Environmental & Occupational Health
Catherine Henshall, Louise Jones, Claire Armitage, Lee Tomlinson
Summary: Community nurses play a crucial role in providing nursing care outside of hospital settings, yet many are not actively involved in research, leading to a lack of relevant studies and funding in community nursing research. To address this issue, four National Institute for Health Research senior nurse researchers in England conducted a priority setting partnership in community nursing to raise the international profile of community nursing research by identifying meaningful research priorities.
ADVANCES IN PUBLIC HEALTH
(2022)
Article
Allergy
Lucy E. Bradshaw, Laura A. Wyatt, Sara J. Brown, Rachel H. Haines, Alan A. Montgomery, Michael R. Perkin, Sandra Lawton, Tracey H. Sach, Joanne R. Chalmers, Matthew J. Ridd, Carsten Flohr, Joanne Brooks, Richard Swinden, Eleanor J. Mitchell, Stella Tarr, Nicola Jay, Kim S. Thomas, Hilary Allen, Michael J. Cork, Maeve M. Kelleher, Eric L. Simpson, Stella T. Lartey, Susan Davies-Jones, Robert J. Boyle, Hywel C. Williams
Summary: The study found that daily emollient application during the first year of life does not prevent atopic dermatitis, food allergy, asthma, or hay fever. The difference in incidence rates of atopic dermatitis, food allergy, asthma, and hay fever between the emollient group and the control group was relatively small.
Article
Dermatology
Kate Greenwell, Katy Sivyer, Laura Howells, Mary Steele, Matthew J. Ridd, Amanda Roberts, Amina Ahmed, Sandra Lawton, Sinead M. Langan, Julie Hooper, Sylvia Wilczynska, Paul Leighton, Gareth Griffiths, Tracey Sach, Paul Little, Hywel C. Williams, Kim S. Thomas, Lucy Yardley, Miriam Santer, Ingrid Muller
Summary: This study aimed to explore the views and experiences of individuals who have used the Eczema Care Online interventions, in order to understand their effectiveness and identify influencing factors. The findings suggest that the interventions are easy to use and trustworthy, and can help individuals manage their eczema by improving their understanding and confidence in eczema management, reducing treatment concerns, and enhancing treatment adherence and management of irritants/triggers.
BRITISH JOURNAL OF DERMATOLOGY
(2023)
Editorial Material
Dermatology
Laura Howells, Holly Broome, Alice Burleigh, Harriet Hammond, Farhan Ismail, Andrew Proctor, Amanda Roberts, Kim S. Thomas, Paul Leighton
BRITISH JOURNAL OF DERMATOLOGY
(2023)
Article
Dermatology
Zahra Moledina, Margaret McPhee, Jane C. Ravenscroft, Eugene Healy, Kathy Radley, Kim S. Thomas, Esther Burden-Teh
Summary: We conducted a survey to understand UK healthcare professionals' routine practice of prescribing oral isotretinoin for acne vulgaris treatment and their experiences and views on low daily dose regimens. The survey showed that clinicians adopted a patient-centred approach in dosing decisions, with varied rationales for using low-dose regimens focused on patient wellbeing. Concerns about efficacy and treatment duration were also noted. The survey results will inform a clinical trial investigating the effectiveness of low daily dose isotretinoin for acne treatment.
CLINICAL AND EXPERIMENTAL DERMATOLOGY
(2023)
Article
Dermatology
Tess McPherson, Jane Ravenscroft, Rukshana Ali, Richard Barlow, Paula Beattie, Anthony Bewley, Sophie Bennett, Tanya Bleiker, Liz Buckley, Gary Burgess, Sarah Copperwheat, Tim Cunliffe, Hannah Dejong, Mina Fazel, Isobel Heyman, Emma Howard, Alice Lambert, Claire Manktelow, Zahra Moledina, Padma Mohandas, Celia Moss, Guy Northover, Isabel Paz, Andrew Proctor, Christine Roxborough, Shatha Shibib, Lea Solman, Jo Srinivasan, Damian Wood, Susannah Baron
Summary: This study aims to provide consensus-based recommendations for the assessment, monitoring, and support of mental health difficulties in children and young people with skin conditions. It also addresses practical implementation questions and provides audit and research recommendations.
BRITISH JOURNAL OF DERMATOLOGY
(2023)
Article
Dermatology
Jonathan Chan, Stephanie J. MacNeill, Beth Stuart, Y. T. Eunice Lo, Amanda Roberts, Dann Mitchell, Matthew J. Ridd
Summary: This study investigated the effect of short-term temperature changes on eczema symptoms in children. The findings suggest that eczema symptoms worsen in winter and improve in summer. Furthermore, the severity of the disease and the type of emollient used do not significantly affect the impact of temperature changes.
CLINICAL AND EXPERIMENTAL DERMATOLOGY
(2023)
Article
Dermatology
Elizabeth R. Emmett, Megan Allen, Sarah Crownshaw, Matthew J. Ridd
Summary: Emollients are widely used for treating atopic dermatitis, but there is limited knowledge about the adverse effects associated with their use. This study aimed to evaluate the reporting of adverse events in randomized controlled trials of emollients for eczema. The results showed poor and inconsistent reporting of adverse events, indicating the need for standardized reporting guidelines.
CLINICAL AND EXPERIMENTAL DERMATOLOGY
(2023)
Article
Medicine, General & Internal
Christos Mousoulis, Alexia Karantana, Ryan W. Trickett, Kim S. Thomas, Paul Leighton
Summary: The study aims to generate detailed data about finger injury experience and treatment from patients' perspectives, and understand their attitudes towards research involvement. The results show that finger injuries can have a greater impact on people's lives than expected, and patients need more support. Factors such as age, job, lifestyle, and hobbies influence treatment experience and willingness to participate in hand research. Patients prefer studies comparing variants of the same treatment over studies comparing different modalities.
Article
Medicine, General & Internal
Miriam Santer, Megan Lawrence, Susanne Renz, Zina Eminton, Beth Stuart, Tracey H. Sach, Sarah Pyne, Matthew J. Ridd, Nick Francis, Irene Soulsby, Karen Thomas, Natalia Permyakova, Paul Little, Ingrid Muller, Jacqui Nuttall, Gareth Griffiths, Kim S. Thomas, Alison M. Layton
Summary: This study assessed the effectiveness of oral spironolactone for acne vulgaris in adult women. The results showed that spironolactone had significant improvement in acne symptoms and quality of life compared to placebo at 12 weeks and 24 weeks, with no serious adverse reactions reported. This suggests that spironolactone is a useful alternative to oral antibiotics for women with acne.
BMJ-BRITISH MEDICAL JOURNAL
(2023)
Article
Dermatology
Yael A. Leshem, Eric L. Simpson, Christian Apfelbacher, Phyllis Spuls, Kim S. Thomas, Jochen Schmitt, Laura Howells, Louise A. A. Gerbens, Michael E. Jacobson, Norito Katoh, Hywel C. Williams
Summary: This article provides a practical guide for implementing Core Outcome Sets (COS) in clinical trials to improve the consistency of outcome measurement and reporting. The implementation roadmap offered in this study can enhance the quality and applicability of research.
BRITISH JOURNAL OF DERMATOLOGY
(2023)
Article
Allergy
Tracey T. Sach, Stella Lartey, Charlotte R. Davies, Joanne H. Chalmers, Rachel E. Haines, Lucy A. Bradshaw, Alan S. Montgomery, Kim J. Thomas, Sara J. Brown, Matthew Ridd, Sandra J. Lawton, Mike Cork, Carsten Flohr, Eleanor Mitchell, Richard Swinden, Laura Wyatt, Stella Tarr, Susan Davies-Jones, Nicola M. Jay, Maeve R. Kelleher, Michael J. Perkin, Robert C. Boyle, Hywel Williams, BEEP Study Team
Summary: A study showed that enhancing skin barrier from birth might prevent eczema and food allergy. However, applying emollient daily for the first year of life in high-risk children does not appear cost-effective in preventing atopic eczema.
CLINICAL AND EXPERIMENTAL ALLERGY
(2023)
Article
Health Care Sciences & Services
Matthew J. Ridd, Sian Wells, Stephanie J. Macneill, Emily Sanderson, Douglas Webb, Jonathan Banks, Eileen Sutton, Alison R. G. Shaw, Zoe Wilkins, Julie Clayton, Amanda Roberts, Kirsty Garfield, Lyn Liddiard, Tiffany J. Barrett, J. Athene Lane, Helen Baxter, Laura Howells, Jodi Taylor, Alastair Hay, Hywel C. Williams, Kim S. Thomas, Miriam Santer
Summary: This study compared the effectiveness and acceptability of four commonly used types of emollients for the treatment of childhood eczema. The results showed that these four types of emollients were equally effective, but satisfaction varied. Future work could focus on supporting shared decision-making of different emollient types.
HEALTH TECHNOLOGY ASSESSMENT
(2023)
Article
Health Care Sciences & Services
Holly Fraser, Lauren Thompson, Esther Crawley, Matthew J. Ridd, Amberly Brigden
Summary: This study explores the challenges of measuring health-related quality of life (HRQoL) in children and examines whether digital ecological momentary assessment (EMA) could enhance HRQoL measurement. It highlights the uncertainty in conceptualizing HRQoL for children, challenges of proxy reporting, difficulties in interpreting change in HRQoL over time, and the potential benefits and challenges of using digital EMA. Future research is needed to further explore and develop this approach.
QUALITY OF LIFE RESEARCH
(2023)
Article
Medicine, General & Internal
Miriam Santer, Megan Lawrence, Susanne Renz, Zina Eminton, Beth Stuart, Tracey H. Sach, Sarah Pyne, Matthew J. Ridd, Nick Francis, Irene Soulsby, Karen Thomas, Natalia Permyakova, Paul Little, Ingrid Muller, Jacqui Nuttall, Gareth Griffiths, Kim S. Thomas, Alison M. Layton
Summary: Oral spironolactone is effective in improving symptoms and quality of life for adult women with acne vulgaris, with better efficacy compared to oral antibiotics.
BMJ-BRITISH MEDICAL JOURNAL
(2023)