Publications (5)

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Journal article

Barriers and facilitators to using an objective risk communication tool during primary care dental consultations: A Theoretical Domains Framework (TDF) informed qualitative study

Featured March 2024 Journal of Dentistry142:104853 Elsevier BV
AuthorsMusson D, Buchanan H, Nolan M, Asimakopoulou K

Objectives: Objective risk communication tools can supplement clinical judgement and support the understanding of potential health risks. This study used the Theoretical Domains Framework (TDF) to identify barriers and facilitators to implementing a risk communication aid within primary care dental consultations. Methods: Dentists (N = 13), recruited via a dental practice database and through professional contacts were interviewed using a TDF-informed semi-structured interview schedule. Data were analysed inductively and deductively coding the themes using the TDF. Results: Eight theoretical domains (environmental context and resources; beliefs about consequences; goals; memory, attention, and decision processes; optimism; reinforcement; social influences and behavioural regulation) and thirteen sub-themes were identified. Insufficient resources and patient factors were commonly encountered barriers and led to increasing pressure to prioritise other tasks. Whilst dentists had a favourable view towards a risk communication aid and acknowledged its benefits, some were sceptical about its ability to facilitate behaviour change. Self-monitoring strategies and colleague support facilitated tool usage. Conclusions: This study identified six barriers and seven facilitators to implementing a risk communication tool within primary care dental settings. Dentists appreciated the value of using a risk communication tool during dental consultations, although some required further support to integrate the tool into practice. Clinical significance: Our findings provide a sound theoretical base for interventions aimed at facilitating patient behaviour change through the use of risk communication in dentistry. Further research should apply behavioural science to support the implementation of the tool in clinical practice.

Journal article

P149 A systematic review of patient reported outcome measures for lupus-specific health-related quality-of-life following COSMIN guidelines

Featured 01 April 2026 Rheumatology65(Supplement_2):keag121.182 Oxford University Press (OUP)
AuthorsPickles T, Musson D, Tremarias D, Jones G

Abstract

Background/Aims

Disease-specific patient reported outcome measures (PROMs) with evidence of measurement properties are essential to accurately assess the multidimensional effects on people living with lupus. A scoping search by members of our team has identified eight PROMs designed to capture key health-related quality-of-life (HRQoL) concepts of importance to patients living with lupus. To date, several scoping and systematic reviews have been conducted, but none have implemented the COSMIN (Consensus-based Standards for the selection of health Measurement Instruments) methodology to systematically appraise the measurement properties of existing PROMs. This means that the most optimal instruments for use in research and clinical practice is currently unknown. The purpose of this abstract is to provide details of a systematic review that is currently in progress, the aim of which is to apply the COSMIN guidelines to systematically review the measurement properties of lupus-specific HRQoL PROMs.

Methods

A systematic review, prospectively registered on PROSPERO, and conducted in accordance with COSMIN guidelines. A search strategy, utilising the filter provided by COSMIN, will be implemented in Web of Science, Embase, PubMed, and Scopus databases to identify articles reporting on lupus-specific HRQoL PROMs. Title and abstract screening will be conducted, with full texts reviewed as appropriate to determine article eligibility. Two independent assessors will review all eligible articles following the COSMIN guidelines.

Results

A narrative description of the included articles and PROMs will be provided, including those identified during our scoping search (for example, the Lupus Quality of Life, United States (LupusQoL-US), Lupus Quality of Life (LupusQoL), Lupus Patient-reported Outcome (LupusPRO), Lupus Patient-Reported Outcome version 1.8 (LupusPRO v1.8), Lupus Quality of life (L-QoL), Lupus Impact Tracker (LIT), Lupus Erythematosus Quality of Life Questionnaire (LEQoL) and the Systemic Lupus Erythematosus-Specific Quality of Life (SLEQoL) questionnaires) and any further instruments captured via our systematic review. PROMs will be analysed and categorised according to their COSMIN recommendation.

Conclusion

The results of this systematic review will determine the measurement properties of existing PROMs, including whether future work is required to improve the measurement of lupus-specific HRQoL PROMs. If the existing PROMs cannot obtain a category A COSMIN recommendation, then further work may be required to modify such measures.

Disclosure

T. Pickles: None. D. Musson: None. D. Tremarias: None. G. Jones: None.

Journal article
Development and evaluation of the first fertility preservation patient decision aid to support boys and young men with cancer: The Cancer, Fertility and Me for Boys and Young Men research protocol.
Featured 22 August 2025 BMJ Open15(8):1-8 BMJ
AuthorsJones GL, Musson DS, O’Donnell N, Lewis A, Williamson M, Yeomanson D, Pacey A, Lane S, Folan A-M, Gough B, Phillips B, Porteous C, Anderson R, Mitchell RT

Introduction Many cancer treatments can result in reduced fertility, impacting survivors’ opportunities for biological parenthood. Fertility preservation (FP) methods for boys and young men, such as cryopreservation of testicular tissue or sperm, offer hope but are currently underused among young male patients with cancer. Despite guidelines recommending early discussion of fertility implications, many newly diagnosed males do not receive FP counselling or referral to fertility services. Male cancer survivors face a higher likelihood of infertility than their peers, yet focused FP decision-making support is lacking. This study aims to address this gap by developing and evaluating the first dedicated patient decision aid (PtDA) for boys and young male patients with cancer aged 11–25 years old, to help them make informed FP decisions before receiving cancer treatment. Methods and analysis The current study follows a multistage process: developing the PtDA, alpha testing for acceptability with former patients, parents and healthcare professionals, and beta testing in clinical settings to ensure effective integration into routine care. Using a combination of interviews and questionnaire data, this research will assess the PtDA’s acceptability and impact on decision-making. Ethics and dissemination This study has been prospectively registered on the Research Registry (10273). Ethics approval has been obtained from Leeds Beckett University and the National Health Service/Health Research Authority before undertaking data collection. The final resource will be disseminated widely and made freely available online via our dedicated Cancer, Fertility and Me website, for use in clinical and research practice.

Journal article
Treat (the whole of) me: A systematic review and qualitative meta-ethnographic synthesis of the experiences of women with POP, SUI or mesh complications in the context of surgical treatment.
Featured 05 August 2026 BMC Urology BMC
AuthorsBudds K, Forshall G, Fisher V, Musson D, Gray TG, Doumouchtsis SK, Radley SC, Jha S, Bagnall A-M, Jones GL

Background Stress Urinary Incontinence (SUI) and Pelvic Organ Prolapse (POP) are common pelvic floor disorders that may significantly impact women’s quality of life. Surgical interventions are available to treat these conditions, some using synthetic mesh. Whilst most women experience good surgical outcomes, some experience complications; in some cases, this has led to further corrective surgery. As part of the NIHR-funded APPRAISE project which aims to develop surgery-specific PROM and PREM measures for women undergoing treatment for POP, SUI, or mesh complications, we conducted a systematic review of qualitative evidence. The review synthesised findings from existing studies to ensure these measures accurately reflect surgical outcomes and experiences of care. Methods We conducted a systematic review of qualitative research with women eligible for surgery for POP, SUI and mesh complications, using meta-ethnography to synthesise study results. Key concepts were synthesised into third-order constructs and a line of argument to reveal insights beyond individual studies. Results A total of 2,613 titles and abstracts and 254 full-text articles were screened, with 18 publications included in the final synthesis. We developed 14 third-order constructs, which were abstracted into six higher order themes, reflecting the trajectory of women’s experiences from living with the conditions through to life after surgery. These themes formed the basis of our line of argument synthesis, which demonstrated that that surgical outcomes cannot be understood solely through clinical symptom assessment, and that women’s perceptions of their condition are closely tied to their experiences of care and their social roles. To illustrate the implications for clinical practice, we also developed a visual representation of the synthesis. Conclusions The findings speak to the importance of determining what matters to women in defining good outcomes following surgery for POP, SUI or mesh complications and of creating the conditions within which women are able to communicate their needs. This highlights the value of a validated PROM and PREM to capture key functional and quality of life outcomes for women pre- and post-surgery, and to support them in having meaningful conversations with their healthcare providers. PROSPERO CRD42023412750

Journal article
A systematic review to determine use of the Endometriosis Health Profiles to measure quality of life outcomes in women with endometriosis
Featured 25 November 2023 Human Reproduction Update30(2):1-29 (29 Pages) Oxford University Press
AuthorsJones GL, Budds K, Taylor F, Musson D, Raymer J, Churchman D, Kennedy SH, Jenkinson C

BACKGROUND The Endometriosis Health Profiles (EHPs), the EHP-30 and EHP-5, are patient-reported outcome measures that were developed to measure the health-related quality of life (HRQoL) of women living with endometriosis. Prior to their development, a systematic review was undertaken which identified that the HRQoL of women living with endometriosis was poorly understood, with only three medical and one surgical study identified. OBJECTIVE AND RATIONALE The 20-year anniversary of the EHP-30 provided a timely opportunity to assess how the tools have been used and explore what the findings tell us about the impact of endometriosis and its associated treatments upon women’s QoL. Applying robust systematic review methodology, following PRISMA guidelines, we sought to answer: How many studies have used the EHP and for what purpose?; What are the demographic characteristics and international context of the studies?; What is the methodological nature and quality of the studies?; Which interventions have been assessed and what are the reported EHP outcomes?; and Can the EHP outcomes of these interventions be analysed using a meta-analysis and, if so, what do the results show? SEARCH METHODS The electronic databases MEDLINE, CINAHL, PsycINFO, PubMed, and Google Scholar were searched from the year the EHP was first published, in 2001 to 26 February 2020 using the search terms ‘EHP30’, ‘EHP5’, ‘EHP-30’, ‘EHP-5’, ‘endometriosis health profile 30’, and ‘endometriosis health profile 5’. We updated the searches on 9 April 2021. All included studies were quality assessed using the Mixed Methods Appraisal Tool (MMAT). OUTCOMES The review included 139 papers. In clinical intervention studies, the EHPs were deployed most frequently to measure the outcomes of medical (n = 35) and surgical (n = 21) treatment. The EHPs were also used in 13 other intervention studies, 29 non-interventional studies, 32 psychometric/cross cultural validation studies; six diagnostic studies, and in three other studies to measure outcomes in related conditions. They were mainly deployed in studies undertaken in Europe and North America. Overall, regardless of the nature of the intervention, most women reported improvements in HRQoL after treatment. Surgical interventions generally resulted in significant improvements for the longest amount of time. There was also evidence that when participants stopped taking medication their EHP scores worsened, perhaps reinforcing the temporary impact of medical treatment. Younger patients reported more negative impact upon their HRQoL. Further evidence using classical test theory to support the EHPs’ robust psychometric properties, including acceptability, dimensionality, reliability, validity (including cross-cultural), and responsiveness, was demonstrated, particularly for the EHP-30. Strikingly, using anchor-based methods, EHP-30 responsiveness studies demonstrate the largest mean changes in the ‘control and powerlessness’ domain post-intervention, followed by ‘pain’. MMAT outcomes indicated the quality of the papers was good, with the exception of five studies. A meta-analysis was not undertaken owing to the heterogeneity of the interventions and papers included in this review. WIDER IMPLICATIONS Women with endometriosis face a lifetime of surgical and/or medical interventions to keep the condition under control. Less invasive treatments that can lead to improved longer term physical and psycho-social outcomes are needed. The EHPs are reliable, valid, acceptable, and responsive tools, but more assessment of EHP outcomes using modern psychometric methods and in the context of women from ethnically diverse backgrounds and in routine clinical care would be beneficial. Given the brevity of the EHP-5, it may be the most appropriate version to use in routine clinical practice, whereas the longer EHP-30, which provides more granularity, is more appropriate for research.

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