The issue of 'imposter' participants within qualitative research has become increasingly prevalent. The problem raises specific concerns for qualitative research around research inclusivity and diversity, alongside the challenge to data integrity and methodological rigour. Existing literature is dominated by case studies and commentaries, with a need for multi-disciplinary guidelines that reflect the specific challenges and context of qualitative research. This study adopted a two-stage expert and evidence-based approach to develop guidance for researchers and organisations. Stage 1 was a mixed-method study with 184 qualitative researchers to establish the reach and impact of the problem, perspectives on the associated issues, and potential solutions across disciplines, career stage, and locality. Stage 2 involved a series of researcher and public workshops to develop and refine guidelines through an iterative analytical process. The resulting guidance for researchers and organisations is a flexible, supportive tool to enable a systematic and evidence-informed approach within their research practice. The guidance provides a framework for considering ethical, epistemological, methodological, and practical considerations when determining how to mitigate the risk of imposter participants within qualitative research. It is hoped that the guidelines will inform wider understanding of the issue and encourage the adoption of evidence-based policies and processes.

Background To determine whether urine 5-HIAA (u5HIAA) concentrations correlate with health-related quality of life (HRQL) in patients with neuroendocrine neoplasms (NEN). Methods A retrospective single-centre cross-sectional study was conducted including 386 patients with histological or radiological diagnosis of NEN. Patients completed standardized questionnaires at clinic appointments. Spot u5HIAA concentrations were correlated with Patient Health Questionnaire-9 (PHQ-9) depression scores, Generalized Anxiety Disorder-7 (GAD-7) anxiety scores, European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30) scores, and the Quality of Life Questionnaire Gastrointestinal Neuroendocrine Tumour Module 21 (QLQ-GINET21) scores. Correlation was evaluated with the Spearman rho test. Results 258 patients had completed HRQL data and corresponding u5HIAA available. Unknown primary sites and sites which do not typically secrete 5-HIAA (26 cases) were excluded in the analysis making a total of 232. One hundred and nineteen (51.3%) were male, 145 (62.5%) had a small intestine primary. Median age was 66 years and median u5HIAA was 7.8 µmol/mmol. Males had significantly higher u5HIAA (median:10.0, IQR: 5.6 – 15.4) compared to females (5.6, IQR: 3.3 - 11.3) (p=0.001). Males reported significantly higher Global Health Status (p=0.018) and lower GINET21 (p=0.001), GAD-7 (p=0.001) and PHQ-9 (p=0.009) scores. Within the overall cohort, there was a significant association between high u5HIAA and low GAD-7 (p=0.032); and between high u5HIAA and low GINET21 GI symptoms (p=0.024). No significant association was found between u5HIAA and PHQ-9 (p=0.383), QLQ GINET21 endocrine symptoms (p=0.197), EORTC QLQ-C30 Global Health Status (p=0.746) or diarrhoea score (p=0.305). Conclusion High circulating concentrations of serotonin may be associated with less anxiety in patients with NEN, further prospective studies are required to corroborate these results. Males had higher u5HIAA and fewer symptoms than females. The sex differences in 5-HIAA values and HRQL in this cohort warrant further investigation.

Volunteers occupy a unique position in organisations; not paid employees yet operating within organisational structures. Volunteering is also an additional life role, managed alongside home, family and, for many, work roles. Despite such complexities, our understanding of volunteer experiences and expectations is limited. We explore the experiences of 72 volunteers using a psychological contract lens (53 volunteers before the COVID-19 pandemic and 19 volunteers during the first national lockdown). Our findings offer insights into consistency across volunteers' expectations (i.e., of collective commitment, shared values, and organisational and peer support) and two distinct aspects of experience aligning roles to the COVID-19 imperative (i.e., motivation and role flexibility). Implications for organisations are discussed in relation to volunteer support, engagement and retention, including 'buddy' systems, peer support networks and open communication regarding expectations.

Hemophilia is a bleeding disorder characterized by recurrent bleeding into muscles and joints. Many people with hemophilia experience multiple traumatic painful bleeding episodes, meaning that pain is often a significant problem for people with hemophilia, with a potentially high prevalence of posttraumatic stress and posttraumatic stress disorder symptoms. Current pain treatments are often ineffective and do not consider pain memories, which are experienced by almost half of people with posttraumatic stress disorder and which has not been explored in people with hemophilia. To fill this gap, 14 semistructured interviews with men with hemophilia were completed between November 2022 and January 2023 to explore their lived experiences of pain relating to their hemophilia. Data were analyzed using reflexive thematic analysis. Three overarching themes were constructed from the data: “trauma histories,” “pain management,” and “impact on the present.” Findings show that pain experienced by people with hemophilia is complex and does include a memory element for many individuals. Pain memories are clear and vivid and include visual, somatic, and emotional elements in intricate detail. Pain can also be experienced in the present when experiencing a pain flashback, and pain in the present can be a trigger to recalling and re-experiencing pain memories from the past. Self-taught active dissociation from pain, imagery, and distraction were described as useful pain management strategies. Findings from this study have implications for clinicians and service providers because current pharmacological and physical pain management techniques may be ineffective when pain memory is involved. Future interventions should consider how pain management is advanced for people with hemophilia and how hemophilia services become trauma informed.

Haemochromatosis is the most common genetic condition among people of European descent, resulting in iron overload and multi-organ dysfunction. Despite early detection and treatment advances, affected individuals experience significant morbidity impacting their quality of life (QoL). To scope the literature for QoL issues and rank them in order of relevance by professional bodies. A literature search was conducted using PubMed, EMBASE, and MEDLINE in addition to a grey literature search against the eligibility criteria up to July 2023. Inclusion criteria included original articles with data concerning symptoms and QoL in patients with haemochromatosis. Nineteen issues were identified from 47 articles and scored by a haemochromatosis special interest group using a scale of 1 to 10 (10 = highest importance). Mean scores were then calculated for each issue. Fatigue, joint pain and sexual issues were key factors associated with impaired QoL. The least relevant were weight changes and abdominal pain. Other issues raised were anxiety, the development of diabetes, and concerns about genetics and family. This is the first scoping review examining common symptoms affecting QoL of patients with hereditary haemochromatosis. Further studies, including patient interviews and a randomised controlled trial, will inform a validated QoL questionnaire.

In this chapter, we explore four particular ways in which innovation has pushed qualitative data collection beyond the familiar focus on face-to-face interviews. We have chosen these methods both for their practicality and because they are tools and techniques we have used ourselves; as committed qualitative researchers, we can attest to their value. First, we identify the way innovation has occurred in response to rapidly changing socio-technological contexts: adaptations and expansions of traditional modes of researching, such as interviewing and focus groups, to utilise the potential of the connected, online worlds we increasingly live in. Second, concurrent with, but not synonymous with, theoretical shifts that have argued against a focus just on ‘the text’, we discuss the blossoming of pluralistic or multi-modal forms of interviewing and focus group research. These two offer examples of how traditionally qualitative methods have expanded beyond their origins; the next two offer examples of techniques which have been released from their quantitative moorings: qualitative surveys offer researchers access to familiar forms of data—personal accounts, perspectives and so on—often conceptualised as ‘representing the self’, somehow; story completion tasks, in contrast, provide something radically different: a window into the social meaning worlds of our participants. Read on—we hope you are inspired!

BACKGROUND:Benign prostatic hyperplasia (BPH) is a complex condition that affects ~3.2 million men in the UK. As men often face multiple treatment options, discussion and consideration of their priorities and preferences is necessary; however, research indicates this is not always adopted in practice. OBJECTIVES:To evaluate decisional interventions currently available for men with symptomatic BPH, distinct from those designed for prostate cancer. METHODS:Eight databases (PubMed, Web of Science, EBSCO, Science Direct, Scopus, Google, Cochrane Library, Centre for Reviews and Dissemination) were searched retrieving a total of 1979 results, of which 13 international studies discussing 10 decision aids (DAs) were included. Studies were eligible that targeted adult males experiencing urological symptoms and discussed any DA designed to promote shared decision making within secondary healthcare. RESULTS:Narrative synthesis found most DAs focused on treatment information provision; however, risk information was not always equally presented. Most DAs lacked strong theoretical links to existing theories on behaviour change, risk communication, and decision making, and sustained implementation within clinical practice. The most effective aids went beyond information provision, to also elicit and integrate patient preferences and values, by adopting multiple behaviour change techniques (BCTs). Risk of bias indicated medium risk with limited information or justification on data collection and analysis methods. CONCLUSION:Current DAs relevant to BPH lack clear focus on individual patient needs required for delivering patient-centred care. Greater transparency and explicit links to behavioural theory and BCTs related to desired future outcomes, expectations, and values are required to effectively create and implement effective interventions into urological practice.

Background. Pseudomyxoma peritonei (PMP) is a form of peritoneal malignancy. It originates from a perforated appendiceal epithelial tumour. Patients with PMP experience various stressful and traumatic events including diagnosis with a rare disease, treatment with extensive and complex surgery, and long hospital stays. Currently, there is a scarcity of studies that primarily aim to assess the quality of life of patients with PMP, and there is no reviews or comprehensive understanding of the quality of life (QoL) issues faced by these patients. Even fewer studies have consulted with patients themselves. Objective. To review the current literature on the QoL of patients with PMP and answer two main questions: What methods are being used to assess the QoL patients with PMP and what are the main findings?. Methods. For the scoping review, five scientific databases were searched (CINAHL, EMBASE, Pubmed, PsycInfo, and Medline). Publications that were published between 2002 and 2022 and in English were included in this review. Studies were screened by two independent reviewers against the review's eligibility criteria. Data related to the QoL of patients with PMP in the included studies were extracted to answer two main questions (what were the methods used to assess QoL in this population, and what were the findings?). The extracted data was presented in table form and qualitatively analyzed using content analysis. Findings. Fourteen studies were included in this review. Only five studies out of fourteen assessed the QoL of patients with PMP as a main outcome, and all these studies assessed QoL in relation to surgery. Studies that assessed QoL used different validated measures. There was a consensus among studies that patients' QoL improved by 12 months posttreatment. The most commonly cited symptom of PMP in this review is abdominal pain. Conclusion. The evidence on the QoL of patients with PMP is limited. Studies that assess the quality of life of these patients independent of surgery are needed. There is no consensus on the measure used to assess QoL in this population.

BackgroundAdolescents are advised to sleep 8-10 hours per night; however, most do not sleep for this recommended amount. Poor adolescent sleep is associated with detrimental health outcomes, including reduced physical activity, risk-taking behaviors, and increased depression and anxiety levels, making this an important public health concern. Existing interventions targeting adolescent sleep are often unsuccessful or their effectiveness unclear, as they are frequently noninteractive, time-consuming, and lack a strong theoretical foundation; highlighting an urgent need for innovative interventions deemed acceptable by adolescents. ObjectiveThe main objective of this study was to determine the acceptability, feasibility, and preliminary impact of a web-based person-based sleep intervention (SleepWise) on adolescent sleep quality. Participant incentivization was also explored to understand its impact on engagement, acceptability, and sleep quality. MethodsA feasibility trial was conducted to test the feasibility, acceptability, and preliminary impact of SleepWise on adolescent sleep quality, developed based on the person-based approach to intervention development. In total, 90 participants (aged 13-17 years) from further education institutions and secondary schools were recruited for two 2-arm randomized controlled trials. One trial (trial 1) was incentivized to understand the impact of incentivization. Acceptability and sleep quality were assessed via questionnaires, and a mixed methods process evaluation was undertaken to assess participant engagement and experience with SleepWise. Engagement was automatically tracked by SleepWise, which collected data on the date and time, pages viewed, and the number of goals and sleep logs completed per participant. Semistructured interviews were carried out to gain participant feedback. ResultsParticipants in both trials reported high levels of acceptability (trial 1: mean 21.00, SD 2.74; trial 2: mean 20.82, SD 2.48) and demonstrated similar levels of engagement with SleepWise. Participants in trial 1 viewed slightly more pages of the intervention, and those in trial 2 achieved their set goals more frequently. Improvements in sleep quality were found in both trials 1 and 2, with medium (trial 1) and large (trial 2) effect sizes. A larger effect size for improvement in sleep quality was found in the nonincentivized trial (d=0.87), suggesting that incentivization may not impact engagement or sleep quality. Both trials achieved acceptable recruitment (trial 1, N=48; trial 2, N=42), and retention at 5 weeks (trial 1: N=30; trial 2: N=30). Qualitative findings showed that adolescents lead busy lifestyles, which may hinder engagement; however, participants deemed SleepWise acceptable in length and content, and made attempts at behavior change. ConclusionsSleepWise is an acceptable and potentially efficacious web-based sleep intervention aimed at adolescents. Findings from this study showed that incentivization did not greatly impact engagement, acceptability, or sleep quality. Subject to a full trial, SleepWise has the potential to address the urgent need for innovative, personalized, and acceptable sleep interventions for adolescents. Trial RegistrationOSF Registries osf.io/yanb2; https://osf.io/yanb2

Background: This study investigated how individual differences in schizotypy differentially predicted types of loneliness – direct, social, emotional, and existential loneliness (in relationships and meaninglessness in life). Methods: We presented participants with the brief version of the Oxford-Liverpool Inventory of Feelings and Experiences and the de Jong Giervald loneliness scale and used dominance analysis to evaluate the dominant predictors of schizotypy on loneliness. We also evaluated the impact of depression on each model. Results: In our preregistered analysis we found evidence to suggest that cognitive disorganization and introvertive anhedonia are consistently the most dominant of the schizotypy predictors. Introvertive anhedonia was the most dominant predictor for social loneliness and existential loneliness in relationships, and cognitive disorganization was the most dominant predictor of direct, emotional and existential meaninglessness in life loneliness. Depression became the most dominant predictor of all types of loneliness when added to the models. Limitations: This research is limited by the cross-sectional nature of the data which is unable to account for changes in loneliness over time, and we acknowledge that the relationship between predictors and outcome is likely bi-directional Conclusions: Our findings highlight the diverse relationship between schizotypy and loneliness type and suggest that schizotypy domains linked to social anxiety and withdrawal are key predictors of loneliness. These findings are important for the development of focused interventions and the prevention of clinical disorder development.

Volunteers are integral to the criminal justice system. For some, this involves providing support in the community to those convicted of sexual offences, which has been found to reduce the risk of reoffending. Currently, the impact on volunteers of working within this context is not well understood, despite the significant stigmatisation of those convicted of sexual offences. This study aimed to address this gap through Interpretative Phenomenological Analysis, focusing on how 'courtesy stigma' (Goffman, 1968), a type of stigma-by-association, impacted on this experience. Eleven volunteers within one organisation were interviewed. Volunteers strongly identified with the volunteer role, and stigma served to strengthen their role identity as individuals who helped those no-one else would help. Participants also exhibited some maladaptive coping strategies and symptoms indicative of burnout. These results contribute significantly to the small body of work on volunteer role identity, stigmatisation, and the social and psychological impacts of volunteer association with a highly stigmatised population.

COVID-19 produced the largest mass mobilisation of collective helping in a generation. Currently, the impact of this voluntary activity is not well understood, particularly for specific groups of volunteers (e.g., new vs. existing) and for different amounts of voluntary activity. Drawing on social psychological work on collective helping, and work from the Social Identity Approach to Health, we seek to address this gap through an analysis of survey data from 1,001 adults living in the south of England (333 men; 646 women; age range = 16-85) during the first UK lockdown. Measures included time spent volunteering pre-/post-COVID, community identification, subjective wellbeing, and volunteering intentions. Those who volunteered during COVID-19 reported higher levels of community identification than those who did not. However, subjective wellbeing benefits were only found for those volunteers who maintained the same level of volunteering (in terms of time) pre-and post-COVID lockdown. New volunteers showed significantly lower levels of wellbeing when they were undertaking 5 or more hours of volunteering a week. Our findings provide unique insight into the variable relationship with wellbeing for different groups of volunteers, as well as how the experiences and functioning of 'crisis' volunteering are different from volunteering during 'normal' times.

Purpose This article describes a mixed methods evaluation of a volunteer-delivered counselling service for people experiencing sight loss, to identify the outcomes, benefits, and challenges of this model of service provision within rehabilitation services. Materials and method A mixed methods approach was used, with both outcome and process evaluation components. Outcomes for 817 service users were assessed pre-and-post service use, using standardised (CORE10) measures. Semi-structured interviews and surveys with 22 volunteer counsellors and 4 senior counsellors were conducted, to understand their experiences of the format, content, and delivery of the service. Results Clients presenting for counselling experienced significant levels of self-reported depression, anxiety, and feelings of bereavement. Analysis showed a significant positive change in clinical outcomes for service users who received volunteer-delivered counselling services. Volunteer counsellors saw the unique and specialist nature of the service as critical for its impact on clients, and reported benefits of volunteering for this service, including developing their skills with this client group. Conclusions Volunteer-delivered counselling can be effective for people affected by sight loss, providing accessible and much-needed psychological support, which is relevant given current pressures on health and social care services. There are key lessons for future models of this type.

Benign prostatic hyperplasia (BPH) is a common condition amongst older men and is associated with lower urinary tract symptoms and erectile dysfunction; these symptoms can be burdensome and negatively affect quality of life. Various surgical and pharmaceutical treatment options exist for BPH but there is a paucity of qualitative research exploring men’s decision-making when seeking BPH treatment. This study therefore qualitatively explored men’s experience of living with BPH and seeking treatment for BPH. Twenty men (aged 52-75) were recruited from outpatient urology clinics at a hospital trust in Southern England. Data were collected using semi-structured interviews (via video or telephone call) and were audio-recorded; transcripts were analysed using thematic analysis. Four themes were generated: “It’s about more than just symptoms”, “The path towards treatment”, “The process of information gathering’, and “Navigating hopes, fears and uncertainty”. Results indicate most men appear to seek treatment for BPH following a gradual, and sometimes lengthy, period of deterioration in symptoms; for some men, however, treatment seeking follows an acute episode of sudden or severe symptoms. The decision to proceed with surgical or minimally invasive treatment options appears to be dependent on men reaching a tipping-point; they no longer perceive their symptoms as tolerable and feel their ability to cope with symptoms is reduced. Men each bring their own set of concerns and preferences about side effects and risk-benefit profiles of different treatments. Clinicians need to be sensitive to these individual differences and incorporate them into shared decision-making for choosing between treatment options for BPH.

Pancreatic neuroendocrine tumours (panNET) are heterogeneous neoplasms usually characterised by slow growth and secretion of hormones, which often cause symptoms. The effect of these symptoms on quality of life (QoL) has not previously been examined in detail. EORTC (European Organisation for Research and Treatment of Cancer) guidelines were followed in phases 1-3 to produce a potential module of questions usable for trials in panNET, focusing on three common types of panNET. For two less common types, a list of symptoms was constructed. Following an extensive literature search and phase 1a interviews with patients and healthcare workers, a long list of potential issues (169) was obtained. This list was shown to 12 patients from three countries in phase 1b interviews to check that no items were missed. The list was reduced to 57 issues. The list of issues was converted to questions, mainly from existing validated questions within the EORTC item library. The list of questions was then used in a phase 3 international study in eight countries using seven languages. A provisional module of 24 items is presented for use in nonfunctioning panNET, gastrinoma and insulinoma. This module increases knowledge concerning QoL in this condition and may be a useful adjunct in clinical trials. A phase 4 trial is being considered for validation of this questionnaire.

Building on the growing discursive approach to people-place relations, we examine how young people negotiate people-place tensions and relations, and how they establish their everyday sense of place in contemporary public spaces. Facilitated by the use of Collaborative Spatial Mapping, analysis of focus group data from 51 young people focuses on three aspects of participants' talk about the places that make up their everyday lives: appropriation of micro-geographical spaces, the construction of autobiographical insideness and the mobilization of shared socio-spatial histories. Our analysis illustrates young people's responses to a broader problematic of being 'troublesome' in public spaces, demonstrating how they construct a deep-rooted attachment to, and sense of themselves as located members within, such spaces. We argue that place appropriation and autobiographical insideness are important concepts for understanding the practice of citizenship by young people, and how such practice is embedded in wider political processes of spatial conflict and exclusion.

Benign prostatic hyperplasia (BPH) is a common condition amongst older men and is associated with lower urinary tract symptoms and erectile dysfunction; these symptoms can be burdensome and negatively affect quality of life. Various surgical and pharmaceutical treatment options exist for BPH but there is a paucity of qualitative research exploring men’s decision-making when seeking BPH treatment. This study therefore qualitatively explored men’s experience of living with BPH and seeking treatment for BPH. Twenty men (aged 52-75) were recruited from outpatient urology clinics at a hospital trust in Southern England. Data were collected using semi-structured interviews (via video or telephone call) and were audio-recorded; transcripts were analysed using thematic analysis. Four themes were generated: “It’s about more than just symptoms”, “The path towards treatment”, “The process of information gathering’, and “Navigating hopes, fears and uncertainty”. Results indicate most men appear to seek treatment for BPH following a gradual, and sometimes lengthy, period of deterioration in symptoms; for some men, however, treatment seeking follows an acute episode of sudden or severe symptoms. The decision to proceed with surgical or minimally invasive treatment options appears to be dependent on men reaching a tipping-point; they no longer perceive their symptoms as tolerable and feel their ability to cope with symptoms is reduced. Men each bring their own set of concerns and preferences about side effects and risk-benefit profiles of different treatments. Clinicians need to be sensitive to these individual differences and incorporate them into shared decision-making for choosing between treatment options for BPH.

In this chapter, we explore the use of mixed and 'multi-modal' methods of data collection in psychological research with young people. Drawing in particular on our experiences of conducting two studies that incorporated a variety of different quantitative and qualitative research methods (Gray and Manning, 2014; Manning and Gray, forthcoming), we highlight the contribution that we believe multiple methods can offer researchers interested in the psychological aspects of health and wellbeing while also considering some of the key challenges we have found in using such methods. We argue that multiple modes of data collection can help us to work with participants in different ways, in different places and at different times to understand their perspectives and practices (Chamberlain et al., 2011), thereby providing access to complex experiences that may otherwise have been difficult to access. Moreover, we argue that such methods can critically disrupt taken-for-granted narratives about a topic, at times making the familiar surprising, and leading to new and enlightening data. This can be particularly useful in research with young people, whose voices are not always heard in research, and therefore illustrate the capacity of mixed methods to address critical transformative and social justice agendas.

HaemophiliaEarly View LETTER TO THE EDITOR Pain memories: A new concept to consider in the management of chronic pain in people with haemophilia Anna J. Wells, Corresponding Author Anna J. Wells anna.wells@hhft.nhs.uk orcid.org/0000-0002-5750-2509 Haemophilia, Haemostasis & Thrombosis Centre, Basingstoke & North Hampshire Hospital, Basingstoke, UK University of Winchester, Winchester, UK ARC Wessex, Southampton, UK Correspondence Anna Wells, Haemophilia, Haemostasis & Thrombosis Centre, Basingstoke & North Hampshire Hospital, Basingstoke, UK. Email: anna.wells@hhft.nhs.ukSearch for more papers by this authorSarah Whitaker, Sarah Whitaker orcid.org/0000-0002-2528-5829 Haemophilia, Haemostasis & Thrombosis Centre, Basingstoke & North Hampshire Hospital, Basingstoke, UKSearch for more papers by this authorDebra Gray, Debra Gray University of Winchester, Winchester, UKSearch for more papers by this authorSarah Mangles, Sarah Mangles orcid.org/0000-0001-5364-6241 Haemophilia, Haemostasis & Thrombosis Centre, Basingstoke & North Hampshire Hospital, Basingstoke, UKSearch for more papers by this authorKelly Hislop-Lennie, Kelly Hislop-Lennie ARC Wessex, Southampton, UKSearch for more papers by this authorDavid Stephensen, David Stephensen orcid.org/0000-0002-6175-3343 Haemophilia Centre, East Kent Hospitals University NHS Foundation Trust, Canterbury, UK Haemophilia Centre, Royal London Hospital, Bart's Health NHS Trust, London, UKSearch for more papers by this author Anna J. Wells, Corresponding Author Anna J. Wells anna.wells@hhft.nhs.uk orcid.org/0000-0002-5750-2509 Haemophilia, Haemostasis & Thrombosis Centre, Basingstoke & North Hampshire Hospital, Basingstoke, UK University of Winchester, Winchester, UK ARC Wessex, Southampton, UK Correspondence Anna Wells, Haemophilia, Haemostasis & Thrombosis Centre, Basingstoke & North Hampshire Hospital, Basingstoke, UK. Email: anna.wells@hhft.nhs.ukSearch for more papers by this authorSarah Whitaker, Sarah Whitaker orcid.org/0000-0002-2528-5829 Haemophilia, Haemostasis & Thrombosis Centre, Basingstoke & North Hampshire Hospital, Basingstoke, UKSearch for more papers by this authorDebra Gray, Debra Gray University of Winchester, Winchester, UKSearch for more papers by this authorSarah Mangles, Sarah Mangles orcid.org/0000-0001-5364-6241 Haemophilia, Haemostasis & Thrombosis Centre, Basingstoke & North Hampshire Hospital, Basingstoke, UKSearch for more papers by this authorKelly Hislop-Lennie, Kelly Hislop-Lennie ARC Wessex, Southampton, UKSearch for more papers by this authorDavid Stephensen, David Stephensen orcid.org/0000-0002-6175-3343 Haemophilia Centre, East Kent Hospitals University NHS Foundation Trust, Canterbury, UK Haemophilia Centre, Royal London Hospital, Bart's Health NHS Trust, London, UKSearch for more papers by this author First published: 24 December 2021 https://doi.org/10.1111/hae.14480Read the full textAboutPDF ToolsRequest permissionExport citationAdd to favoritesTrack citation ShareShare Give accessShare full text accessShare full-text accessPlease review our Terms and Conditions of Use and check box below to share full-text version of article.I have read and accept the Wiley Online Library Terms and Conditions of UseShareable LinkUse the link below to share a full-text version of this article with your friends and colleagues. Learn more.Copy URL Share a linkShare onFacebookTwitterLinked InRedditWechat No abstract is available for this article. Early ViewOnline Version of Record before inclusion in an issue RelatedInformation