Assessing the experience of person-centred coordinated care of people with chronic conditions in the Netherlands: Validation of the Dutch P3CEQ.

BACKGROUND: Countries are adapting their health and social care systems to better meet the needs of growing populations with (multiple) chronic conditions. To guide this process, assessment of the 'patient experience' is becoming increasingly important. For this purpose, the Person-Centred Coordinated Care Experience Questionnaire (P3CEQ) was developed in the United Kingdom, and translated into several languages. AIM: This study aimed to assess the internal and construct validity of the Dutch P3CEQ to capture the experience of person-centred coordinated care of people with chronic conditions in the Netherlands. PARTICIPANTS AND METHODS: Adults with chronic conditions (N = 1098) completed the Dutch P3CEQ, measures of health literacy and patient activation, and reported the use and perceived quality of care services. Data analysis included Principal Component and reliability analysis (internal validity), analysis of variance and Student's T-tests (construct validity). RESULTS: The two-component structure found was pretty much the same as in the UK validation study. Sociodemographic correlates also resembled those found in the United Kingdom. Women, persons who were less educated, less health-literate or less activated experienced less person-centred coordinated care. P3CEQ scores correlated positively with general practitioner performance scores and quality ratings of the total care received. CONCLUSION: The Dutch P3CEQ is a valid instrument to assess the experience of person-centred coordinated care among people with chronic conditions in the Netherlands. Awareness of inequity and more attention to communication skills in professional training are needed to ensure that care professionals better recognize the needs of women, lower educated or less health-literate persons, and improve their experiences of care. PATIENT CONTRIBUTION: The P3CEQ has been developed in collaboration with a range of stakeholders. Eighteen persons with (multiple) chronic conditions participated as patient representatives and codesign experts in (four) codesign workshops. Other patient representatives participated in cognitive testing of the English-language instrument. The usability of the P3CEQ to capture the experience of person-centred coordinated care of older persons has been examined by interviewing 228 older European service users, including 13 living in the Netherlands, as part of the SUSTAIN project. More than a thousand persons with chronic conditions participated in the validation study of the Dutch P3CEQ.

Validation of the person-centred coordinated care experience questionnaire (P3CEQ).

BACKGROUND: Measuring patient experiences of healthcare is increasingly emphasized as a mechanism to measure, benchmark and drive quality improvement, clinical effectiveness and patient safety at both national and local NHS level. Person-centred coordinated care (P3C) is the conjunction of two constructs; person-centred care and care coordination. It is a complex intervention requiring support for changes to organizational structure and the behaviour of professionals and patients. P3C can be defined as: 'care and support that is guided by and organized effectively around the needs and preferences of individuals'. Despite the vast array of PRMS available, remarkably few tools have been designed that efficiently probe the core domains of P3C. This paper presents the psychometric properties of a newly developed PREM to evaluate P3C from a patient perspective. METHODS: A customized EMIS search was conducted at 72 GP practices across the South West (Somerset, Devon and Cornwall) to identify 100 patients with 1 or more LTCs, and are frequent users of primary healthcare services. Partial Credit Rasch Modelling was conducted to identify dimensionality and internal consistency. Ecological validity and sensitivity to change were assessed as part of intervention designed to improve P3C in adults with multiple long-term conditions; comparisons were drawn between the P3CEQ and qualitative data. RESULTS: Response rate for the P3CEQ was 32.82%. A two-factor model was identified. Rasch analysis confirmed unidimensionality of each factor (using infit MSQ values between 0.5 and 1.5). High internal consistency was established for both factors; For the Person-centred scale Cronbach's Alpha = 0.829, Person separation = 0.756 and for the coordination scale Cronbach's alpha = 0.783, person separation = 0.672. CONCLUSIONS: The P3CEQ is a valid and reliable measure of P3C. The P3C is considered to have strong face, construct and ecological validity, with demonstrable sensitivity to change in a primary healthcare intervention.

Can practitioners use patient reported measures to enhance person centred coordinated care in practice? A qualitative study.

BACKGROUND: To ascertain whether person centred coordinated care (P3C) is being delivered in healthcare services, components relating to the construct need to be measured. Patient reported measures (PRMs) can be used to provide a measurement of patients' experiences of P3C. Traditionally, they have been used to assess whether interventions are delivering P3C. Recently there has been an increased interest in using them to directly enhance P3C in clinical practice by, for example, improving practitioner-patient communication. However, there is limited research available on how P3C can be implemented in practice. This study aimed to extend this literature base by exploring how professionals use PRMs to enhance P3C. METHODS: Cross sectional thematic analysis of 26 semi-structured interviews with a variety of professionals who have experience of how PRMs can be used to make improvements to P3C. Inductive themes were mapped onto components of P3C care that fell under five established domains of P3C (Information and Communication; My Goals/Outcomes; Decision making; Care Planning and Transitions) to explore whether and how individual components of P3C were being improved through PRMs. Barriers and facilitators that affected the delivery and the results of the PRMs were also identified. RESULTS: Three P3C domains (Information and Communication, My Goals/Outcomes and Care Planning) were mapped frequently onto themes generated by the participants' interviews about PRM use. However, the domain 'Decision Making' was only mapped onto one theme and 'Transitions' was not mapped at all. Participant reports suggested that PRM use by practitioners enhanced patients' ability to self-manage, communicate, engage and reflect during consultations. Barriers to PRM use were related to a lack of a whole service approach to implementation. CONCLUSIONS: Practitioners use both PROMs and PREMs in various ways to improve different aspects of patient care. By sharing experiences professionals can benefit from each other's learning and work together to extend the potential value that PRMs can offer to P3C delivery.

Creating and facilitating change for Person-Centred Coordinated Care (P3C): The development of the Organisational Change Tool (P3C-OCT).

BACKGROUND: Person Centred Coordinated Care (P3C) is a UK priority for patients, carers, professionals, commissioners and policy makers. Services are developing a range of approaches to deliver this care with a lack of tools to guide implementation. METHODOLOGY: A scoping review and critical examination of current policy, key literature and NHS guidelines, together with stakeholder involvement led to the identification of domains, subdomains and component activities (processes and behaviours) required to deliver P3C. These were validated through codesign with stakeholders via a series of workshops and cognitive interviews. RESULTS: Six core domains of P3C were identified as follows: (i) my goals, (ii) care planning, (iii) transitions, (iv) decision making (v), information and communication and (vi) organizational support activities. These were populated by 29 core subdomains (question items). A number of response codes (components) to each question provide examples of the processes and activities that can be actioned to achieve each core subdomain of P3C. CONCLUSION: The P3C-OCT provides a coherent approach to monitoring progress and supporting practice development towards P3C. It can be used to generate a shared understanding of the core domains of P3C at a service delivery level, and support reorganization of care for those with complex needs. The tool can reliably detect change over time, as demonstrated in a sample of 40 UK general practices. It is currently being used in four UK evaluations of new models of care and being further developed as a training tool for the delivery of P3C.

Patient-Reported Measures for Person-Centered Coordinated Care: A Comparative Domain Map and Web-Based Compendium for Supporting Policy Development and Implementation.

BACKGROUND: Patient-reported measure (PRM) questionnaires were originally used in research to measure outcomes of intervention studies. They have now evolved into a diverse family of tools measuring a range of constructs including quality of life and experiences of care. Current health and social care policy increasingly advocates their use for embedding the patient voice into service redesign through new models of care such as person-centered coordinated care (P3C). If chosen carefully and used efficiently, these tools can help improve care delivery through a variety of novel ways, including system-level feedback for health care management and commissioning. Support and guidance on how to use these tools would be critical to achieve these goals. OBJECTIVE: The objective of this study was to develop evidence-based guidance and support for the use of P3C-PRMs in health and social care policy through identification of PRMs that can be used to enhance the development of P3C, mapping P3C-PRMs against an existing model of domains of P3C, and integration and organization of the information in a user-friendly Web-based database. METHODS: A pragmatic approach was used for the systematic identification of candidate P3C-PRMs, which aimed at balancing comprehensiveness and feasibility. This utilized a number of resources, including existing compendiums, peer-reviewed and gray literature (using a flexible search strategy), and stakeholder engagement (which included guidance for relevant clinical areas). A subset of those candidate measures (meeting prespecified eligibility criteria) was then mapped against a theoretical model of P3C, facilitating classification of the construct being measured and the subsequent generation of shortlists for generic P3C measures, specific aspects of P3C (eg, communication or decision making), and condition-specific measures (eg, diabetes, cancer) in priority areas, as highlighted by stakeholders. RESULTS: In total, 328 P3C-PRMs were identified, which were used to populate a freely available Web-based database. Of these, 63 P3C-PRMs met the eligibility criteria for shortlisting and were classified according to their measurement constructs and mapped against the theoretical P3C model. We identified tools with the best coverage of P3C, thereby providing evidence of their content validity as outcome measures for new models of care. Transitions and medications were 2 areas currently poorly covered by existing measures. All the information is currently available at a user-friendly web-based portal (p3c.org.uk), which includes all relevant information on each measure, such as the constructs targeted and links to relevant literature, in addition to shortlists according to relevant constructs. CONCLUSIONS: A detailed compendium of P3C-PRMs has been developed using a pragmatic systematic approach supported by stakeholder engagement. Our user-friendly suite of tools is designed to act as a portal to the world of PRMs for P3C, and have utility for a broad audience, including (but not limited to) health care commissioners, managers, and researchers.

From colour photographs to black-and-white line drawings: an assessment of chimpanzees' (Pan troglodytes') transfer behaviour.

Over two experiments, we investigated the ability of two adolescent and two adult chimpanzees to generalise a learnt, pictorial categorisation to increasingly degraded and abstract stimuli. In Experiment 2, we further assessed the ability of the adolescent chimpanzees to engage in open-ended categorisation of black-and-white line drawings. The current results confirmed and extended previous findings, showing that sub-adult chimpanzees outperform adult chimpanzees in the categorisation of pictorial stimuli, particularly when the stimuli are more degraded and abstract in nature. However, none of the four chimpanzees showed positive transfer of their category learning to a set of black-and-white line drawings, and neither of the adolescent chimpanzees evidenced reliable open-ended categorisation of the black-and-white line drawings. The latter findings suggest that both sub-adult and adult chimpanzees find it difficult to recognise black-and-white line drawings, and that open-ended categorisation of black-and-white line drawings is challenging for chimpanzees.

Exploring the relationships between psychological variables and loot box engagement, part 2: exploratory analyses of complex relationships.

In a pre-registered survey linked to this paper (Exploring the relationships between psychological variables and loot box engagement, part 1: pre-registered hypotheses), we confirmed bivariate associations between engagement with loot boxes (purchasable randomized rewards in video games) and measures of problem gambling, problem video gaming, impulsivity, gambling cognitions, experiences of game-related 'flow', psychological distress and reduced wellbeing. However, these variables have complex relationships, so to gain further insights, we analysed the dataset (1495 gamers who purchase loot boxes and 1223 purchasers of non-randomized content) in a series of Bayesian mixed-effects multiple regressions with a zero-inflation component. The results challenge some well-established results in the literature, including associations between loot box engagement and problematic gambling measures, instead suggesting that this relationship might be underpinned by shared variance with problem video gaming and gambling-related cognitions. An entirely novel discovery revealed a complex interaction between experiences of flow and loot box engagement. Distress and wellbeing are both (somewhat contradictorily) predictive of participants engaging with loot boxes, but neither correlate with increasing loot box risky engagement/spend (among those who engage). Our findings unravel some of the nuances underpinning loot box engagement, yet remain consistent with narratives that policy action on loot boxes will have benefits for harm minimization.

Measuring Fatigue in Multiple Sclerosis: There may be Trouble Ahead.

INTRODUCTION: Poorly developed patient-reported outcome measures (PROs) risk type-II errors (i.e. false negatives) in clinical trials, resulting in erroneous failure to achieve trial endpoints. Validity is a fundamental requirement of fit-for-purpose PROs, with the main determinant of validity being the PROs items, i.e. content validity. Here, we sought to identify fatigue PRO instruments used in multiple sclerosis (MS) studies and to assess the extent to which their development satisfied current content validity standards. METHODS: We searched Embase® and Medline® for MS studies using fatigue-based PROs. Abstracts were screened, PROs identified, and their relevant development papers assessed against seven Consensus Standards for Measurement Instruments (COSMIN) criteria for content development. RESULTS: From 3814 abstracts, 18 fatigue PROs met our inclusion criteria. Most PROs did not satisfy at least one COSMIN content validity standard. Frequent omissions during PRO development include: clearly defined constructs; conceptual frameworks; qualitative research in representative samples; and literature reviews. PRO development quality has improved significantly since FDA guidance was published (U = 10.0, p = 0.02). However, scatterplots and correlations between PRO COSMIN scores and citation frequency (rho = - 0.62) and clinical trials usage (rho =  + 0.18) implied that PRO quality is unrelated to choice. COSMIN scores implied that the Fatigue Symptoms and Impact Questionnaire-Relapsing Multiple Sclerosis (FSIQ-RMS) and Neurological Fatigue Index-Multiple Sclerosis (NFI-MS) had the strongest evidence for adequate content validity. CONCLUSION: Most existing fatigue PROs do not meet COSMIN content validity requirements. Although two PROs scored well on aggregate (NFI-MS and FSIQ-RMS), our subsequent evaluation of the item sets that generated their scores implied that both PROs have weaker content validity than COSMIN suggests. This indicates that COSMIN criteria require further development, and raises significant concerns about how we have measured one of the most common and burdensome MS symptoms. A detailed head-to-head psychometric evaluation is needed to determine the impact of different PRO development qualities and the implications of the problems implied by our analyses, on measurement performance.

In MS clinical trials, impacts such as fatigue, walking ability, and quality of life, are measured using questionnaires­called patient-reported outcome measures­completed by people living with MS. The quality of these measures is fundamentally important. If poor quality patient-reported outcome measures are used, treatment benefits are easily missed or underestimated.We studied the quality of 18 fatigue patient-reported outcome measures previously used in MS studies. Specifically, we studied how the questionnaire questions were developed and scored them against recognised quality control standards. In general, the patient-reported outcome measures were poor. Only two scored reasonably well. One common weakness was that people living with MS were not involved during patient-reported outcome measure development. We also conducted novel examinations that went beyond the quality control standards. These test how well the questions relate back to the MS impacts they claim to measure. We found even the two best patient-reported outcome measures were poor.Our study had two findings. First, patient-reported outcome measures of MS fatigue are poor. Second, current standards for testing patient-reported outcome measure development are too easy to satisfy, overestimate patient-reported outcome measure quality, and need updating. Therefore, the ways we measure MS fatigue, one of the most common and burdensome MS symptoms, are scientifically weak. Measuring fatigue in multiple sclerosis: there may be trouble ahead­a video abstract (MP4 125165 KB).

Similarity and structured representation in human and nonhuman apes.

How we judge the similarity between objects in the world is connected ultimately to how we represent those objects. It has been argued extensively that object representations in humans are 'structured' in nature, meaning that both individual features and the relations between them can influence similarity. In contrast, popular models within comparative psychology assume that nonhuman species appreciate only surface-level, featural similarities. By applying psychological models of structural and featural similarity (from conjunctive feature models to Tversky's Contrast Model) to visual similarity judgements from adult humans, chimpanzees, and gorillas, we demonstrate a cross-species sensitivity to complex structural information, particularly for stimuli that combine colour and shape. These results shed new light on the representational complexity of nonhuman apes, and the fundamental limits of featural coding in explaining object representation and similarity, which emerge strikingly across both human and nonhuman species.

Exploring the relationships between psychological variables and loot box engagement, part 1: pre-registered hypotheses.

Loot boxes are purchasable randomized rewards in video games that share structural and psychological similarities with gambling. Systematic review evidence has established reproducible associations between loot box purchasing and both problem gambling and problem video gaming, perhaps driven by a range of overlapping psychological processes (e.g. impulsivity, gambling-related cognitions, etc.) It has also been argued that loot box engagement may have negative influences on player financial and psychological wellbeing. We conducted a pre-registered survey of 1495 loot box purchasing gamers (LB cohort) and 1223 gamers who purchase other, non-randomized game content (nLB cohort). Our survey confirms 15 of our 23 pre-registered hypotheses against our primary outcome (risky loot box engagement), establishing associations with problem gambling, problem gaming, impulsivity, gambling cognitions, experiences of game-related 'flow' and specific 'distraction and compulsion' motivations for purchase. Results with hypotheses concerning potential harms established that risky loot box engagement was negatively correlated with wellbeing and positively correlated with distress. Overall, results indicate that any risks from loot boxes are liable to disproportionately affect various 'at risk' cohorts (e.g. those experiencing problem gambling or video gaming), thereby reiterating calls for policy action on loot boxes.

Are stress responses to geomagnetic storms mediated by the cryptochrome compass system?

A controversial body of literature demonstrates associations of geomagnetic storms (GMS) with numerous cardiovascular, psychiatric and behavioural outcomes. Various melatonin hypotheses of GMS have suggested that temporal variation in the geomagnetic field (GMF) may be acting as an additional zeitgeber (a temporal synchronizer) for circadian rhythms, with GMS somehow interfering with the hypothesized system. The cryptochrome genes are known primarily as key components of the circadian pacemaker, ultimately involved in controlling the expression of the hormone melatonin. Cryptochrome is identified as a clear candidate for mediating the effect of GMS on humans, demonstrating the prior existence of several crucial pieces of evidence. A distinct scientific literature demonstrates the widespread use of geomagnetic information for navigation across a range of taxa. One mechanism of magnetoreception is thought to involve a light-dependent retinal molecular system mediated by cryptochrome, acting in a distinct functionality to its established role as a circadian oscillator. There is evidence suggesting that such a magnetosense--or at least the vestiges of it--may exist in humans. This paper argues that cryptochrome is not acting as secondary geomagnetic zeitgeber to influence melatonin synthesis. Instead, it is hypothesized that the cryptochrome compass system is mediating stress responses more broadly across the hypothalamic-pituitary-adrenal (HPA) axis (including alterations to circadian behaviour) in response to changes in the GMF. Two conceptual models are outlined for the existence of such responses--the first as a generalized migrational/dispersal strategy, the second as a stress response to unexpected signals to the magnetosense. It is therefore proposed that GMS lead to disorientation of hormonal systems in animals and humans, thus explaining the effects of GMS on human health and behaviour.

Loot box engagement: relationships with educational attainment, employment status and earnings in a cohort of 16 000 United Kingdom gamers.

BACKGROUND AND AIMS: Loot boxes are purchasable randomised rewards in video games that share structural and psychological similarities with gambling. Systematic review evidence has established reproducible associations between loot box purchasing and both problem gambling and problem video gaming. We aimed to measure the association between loot box engagement and socioeconomic correlates. DESIGN: The study was a cross-sectional online survey using the recruitment platform, Prolific. SETTING: United Kingdom (UK). PARTICIPANTS: A cohort of 16 196 UK adults (18 + years) self-reporting as video gamers. MEASUREMENTS: Respondents were asked about their game-related purchasing behaviour (including loot boxes), recent monthly spend on loot boxes and gambling engagement (gambling in any form; gambling online; playing 'social casino' games). A range of demographic variables were simultaneously captured, including age, sex, ethnicity, earnings, employment and educational attainment. FINDINGS: Overall, 17.16% of gamers in our cohort purchased loot boxes, with a mean self-reported monthly spend of £29.12. These loot box purchasers are more likely to gamble (45.97% gamble) than people who make other types of game-related purchases (on aggregate, 28.13% of non-loot box purchasers gamble), and even greater still than those who do not make any game related purchases (24.38% gamble P < 0.001). Loot box engagement (as binary yes/no or as monthly spend normalised to earnings) was significantly associated with younger age (P < 0.001 and P < 0.001; respectively, for binary yes/no and monthly spend, adjusted for false discovery rate correction), male sex (P < 0.001 and P = 0.025), non-university educational attainment (P < 0.001 and P < 0.001) and unemployment (P = 0.003 and P = < 0.001). Lower earners spent a higher proportion of monthly earnings on loot boxes (P < 0.001). CONCLUSIONS: The demographic associations of video game loot box engagement (younger age, male sex, non-university educational attainment and unemployment) mirror those of other addictive and problematic behaviours, including disordered gambling, drug and alcohol misuse.

Loot boxes and problem gambling: Investigating the "gateway hypothesis".

Loot boxes are purchasable items in video games with a chance-based outcome. They have attracted substantial attention from academics and legislators over recent years, partly because of associations between loot box engagement and problem gambling. Some researchers have suggested that loot boxes may act as a gateway into subsequent gambling and/or problem gambling. However, such "gateway effects" have not been formally investigated. Using a survey of 1102 individuals who both purchase loot boxes and gamble, we found that 19.87% of the sample self-reported either "gateway effects" (loot boxes causally influencing subsequent gambling) or "reverse gateway effects" (gambling causally influencing subsequent loot box engagement). Both subsets of participants had higher scores for problem gambling, problem video gaming, gambling-related cognitions, risky loot boxes engagement, and impulsivity. These individuals also had a tendency for higher loot box and gambling spend; suggesting that potential gateway effects are related to measurable risks and harms. Moreover, the majority of participants reporting gateway effects were under 18 when they first purchased loot boxes. Content analysis of free text responses revealed several reasons for self-reported gateway effects, the most frequent of which were sensation-seeking, normalisation of gambling-like behaviours, and the addictive nature of both activities. Whilst the cross-sectional nature of our findings cannot conclusively establish directions of causality, thus highlighting the need for longitudinal research, we conclude that there is a case for legislation on loot boxes for harm minimisation purposes.

Quality of fracture reduction is associated with patient survival at one year, but not 30 days, following trochanteric hip fracture fixation. A retrospective cohort study.

INTRODUCTION: Few studies have been performed to evaluate the association between technical surgical factors and patient outcomes following hip fracture surgery. We performed a retrospective cohort study of elderly patients who had undergone fixation of trochanteric hip fractures using a sliding hip screw (SHS), with the aim of establishing whether there was a correlation between quality of fracture reduction and mortality at 30 days and one year. PATIENTS AND METHODS: A retrospective cohort study was designed. Inclusion criteria were trochanteric (AO 31A1 or 31A2) fractures in patients aged ≥ 65 years, presenting <3 days after injury and fixed using an SHS. Fracture reduction was classified using the Baumgaertner Reduction Quality Criteria (BRQC). A validated predictor of mortality following hip fracture was used to stratify for confounding variables that might affect mortality. Multivariate logistic regression was used to explore the association between fracture reduction and mortality. RESULTS: 329 patients were identified (mean age 86, 27% male). 57% had a good reduction, 39% had a fair reduction and 4% had a poor reduction. As reduction grade deteriorated, predicted mortality increased (good reduction: 7.3%; fair reduction: 8.4%; poor reduction: 15.5%). Without adjustment for predicted mortality, there was a significant correlation between decreasing reduction grade and mortality at both time points (30-day: odds ratio 1.95, p = 0.049; one year: odds ratio 1.86, p = 0.003). When adjusted for predicted mortality, only one year mortality remained significant (30 day: odds ratio 1.61, p = 0.173; one year: odds ratio 1.62, p = 0.037). CONCLUSION: Some, but not all, of the association between fracture reduction and mortality can be explained by predetermined predictors of a poor outcome. There remains, however, a correlation between poor fracture reduction and mortality at one year. Every effort must be made to achieve an anatomical reduction for these injuries, and trainees must be instructed in methods to achieve this.

Self-Medication for Chronic Pain Using Classic Psychedelics: A Qualitative Investigation to Inform Future Research.

Background: Chronic Pain is among the leading causes of disability worldwide with up to 60% of patients suffering from comorbid depression. Psychedelic-assisted therapy has recently been found effective in treating a host of mental health issues including depression and has historically been found to be useful in treating pain. Reports of self-medication for chronic pain using psychedelic drugs have been widely documented, with anecdotal evidence indicating widespread success in a range of pathologies. Aims: In preparation for an upcoming trial, to better understand how those with lived experience of chronic pain self-medicate with psychedelic drugs, and to establish, in detail, their therapeutic protocols and practices for success. Methods: As part of patient-involvement (PI) for an upcoming trial in this population, 11 individuals who reported self-medicating with psychedelic drugs took part in a 1-h semi-structured discussion, which was then transcribed and thematically analyzed. Results: Across a range of psychedelic substances and doses, reported pain scores improved substantially during and after psychedelic experiences. Two processes, Positive Reframing and Somatic Presence, were reliably identified as playing a role in improvements in mental wellbeing, relationship with pain, and physical (dis)comfort. Inclusion of other strategies such as mindfulness, breathwork, and movement were also widely reported. Due to the data's subjective nature, this paper is vulnerable to bias and makes no claims on causality or generalisability. Together, these results have been used to inform study design for a forthcoming trial. Conclusion: This pre-trial PI work gives us confidence to test psychedelic therapy for chronic pain in a forthcoming controlled trial. The results presented here will be instrumental in improving our ability to meet the needs of future study participants.

Secondary analysis of loot box data: Are high-spending "whales" wealthy gamers or problem gamblers?

INTRODUCTION: Loot boxes are purchasable randomised reward mechanisms in video games. Due to structural and psychological similarities with gambling, there are fears that loot box purchasing may be associated with problematic gambling. Whilst monthly expenditure is typically modest (i.e. < $20), the distribution is highly skewed, with a small number of high-level spenders, sometimes referred to as "whales". It is not known what proportion of industry profits are derived from such players, and whether they are typically wealthy individuals and/or problem gamblers. METHODS: We used structured literature searches to identify surveys of gamers with open-access loot box data. The resulting datasets were aggregated, and correlations between loot box expenditure, problem gambling and earnings investigated using Spearman's rho correlations. RESULTS: The combined open-access data comprised 7,767 loot box purchasers (5,933 with self-report earnings). Secondary analysis of this self-report data confirmed that disproportionate revenue appears to be generated from high-level spenders: the top 5% of spenders (> $100/month) represent half of loot box revenue. Previously reported correlations between problem gambling and loot box expenditure were confirmed, with an aggregate correlation of ρ = 0.34, p < .001. In contrast, there was no significant correlation between loot box spend and earnings ρ = 0.02, p = .10. CONCLUSION: Our secondary analysis suggests that games developers (unwittingly or not) are disproportionately profiting from moderate and high-risk gamblers, rather than high earning customers. Such patterns of spending mirror those observed with gambling revenues, and have implications for harm minimisation and ongoing policy debates around loot boxes.

Measuring Older Peoples' Experiences of Person-Centred Coordinated Care: Experience and Methodological Reflections from Applying a Patient Reported Experience Measure in SUSTAIN.

INTRODUCTION: While several evaluation studies on (cost-)effectiveness of integrated care have been conducted in recent years, more insight is deemed necessary into integrated care from the perspective of service users. In the context of a European project on integrated care for older people living at home (SUSTAIN), this paper shares the experience and methodological reflections from applying a Patient Reported Experience Measure (PREM) on person-centred coordinated care -the P3CEQ- among this population. METHODS: A combination of quantitative and qualitative data and analysis methods was used to assess the usability and the quality of applying a PREM among older people presenting complex care needs, using the P3CEQ delivery in SUSTAIN as a case study. 228 service users completed the P3CEQ and nine SUSTAIN researchers participated in a consultation about their experience administering the questionnaire. P3CEQ scores were analysed quantitatively using principal component analysis and multilevel linear regression. P3CEQ open responses and researcher notes collected when administering the questionnaire were thematically analysed. RESULTS: Service user inclusion was high and most P3CEQ items had low non-response rates. Quantitative analysis and researcher experience indicate the relevance of face-to-face administration for obtaining such an amount of data in this population group. The presence of a carer increased inclusion of more vulnerable respondents, such as the cognitively impaired, but posed a challenge in data interpretation. Although several P3CEQ items were generally understood as intended by questionnaire developers, the analysis of open responses highlights how questions can lead to diverging and sometimes narrow interpretations by respondents. Cognitive impairment and a higher educational attainment were associated with lower levels of perceived person-centredness of care. CONCLUSION: This study shows essential preconditions to meaningfully collect and analyse PREM data on older peoples' experiences with integrated care: face-to-face administration away from care providers, collection of reasons for non-response and open comments providing nuances to answers, and multilevel modelling taking into account diversity in the target population. Several areas of improvement for future PREM use in this population have been identified: use of administration and coding guides, inclusion of clear and easy to understand definitions and examples illustrating what questions do and do not mean, measures of the expectations of person-centred coordinated care, and procedures ensuring sound ethical research. These methodological learnings can enhance future evaluation of integrated care from a service user perspective.

Co-design of Guidance for Patient and Public Involvement in Psychedelic Research.

Within the context of scientific research, patient and public involvement (PPI) is defined as research performed "with" or "by" patients and members of the public, rather than "to," "about", or "for" them. When carried out systematically and thoughtfully, PPI has the potential to strengthen the quality and impact of research by fostering accountability, transparency, and relevance. There exist numerous guidelines, frameworks and tools for supporting PPI, however, these do not account for the unique challenges faced in psychedelic research. This paper describes the co-design of guidance intended to help build, evaluate and improve PPI in psychedelic research. A steering group was formed to design and run a co-design workshop alongside public collaborators. Insights from this workshop were analyzed and refined into a comprehensive and readily usable guide for planning PPI specific to the field of psychedelic research. Core values emerging from the process focused on the essential importance of trust, learning, purpose and inclusivity. It is hoped that this guidance will be a starting point for incorporating PPI in future psychedelic research, so that it can grow and adapt as this burgeoning field of research progresses.

"It's the Attraction of Winning That Draws You in"-A Qualitative Investigation of Reasons and Facilitators for Videogame Loot Box Engagement in UK Gamers.

Excessive engagement with (increasingly prevalent) loot boxes within games has consistently been linked with disordered gambling and/or gaming. The importance of recognising and managing potential risks associated with loot box involvement means understanding contributing factors is a pressing research priority. Given that motivations for gaming and gambling have been informative in understanding risky engagement with those behaviours, this qualitative study investigated motivations for buying loot boxes, through in-depth interviews with 28 gamers from across the UK. A reflexive thematic analysis categorised reasons for buying into seven "themes"; opening experience; value of box contents; game-related elements; social influences; emotive/impulsive influences; fear of missing out; triggers/facilitators. These themes are described in detail and discussed in relation to the existing literature and motivation theories. This study contributes to understanding ways in which digital items within loot boxes can be highly valued by purchasers, informing the debate around parallels with gambling. Findings that certain motivations were disproportionately endorsed by participants with symptoms of problematic gambling has potential implications for policy and warrants further study.

Development and Validation of the RAFFLE: A Measure of Reasons and Facilitators for Loot Box Engagement.

Qualitative studies have identified a diverse array of motivations for purchasing items within video games through chance-based mechanisms (i.e., "loot boxes"). Given that some individuals-particularly those at risk of disordered gaming and/or gambling-are prone to over-involvement with loot box purchasing, it is important to have a reliable, valid means of measuring the role of different motivations in driving purchasing behaviour. Building on prior qualitative research, this paper reports the development and validation of the "RAFFLE" scale, to measure the Reasons and Facilitators for Loot box Engagement. A 23-item, seven-factor scale was developed through cognitive interviews (n = 25) followed by two surveys of UK-based gamers who purchase loot boxes; analysed via exploratory (n = 503) and confirmatory (n = 1495) factor analysis, respectively. Subscales encompassed "enhancement'; "progression'; "social pressure'; "distraction/compulsion'; "altruism'; "fear of missing out'; and "resale". The scale showed good criterion and construct validity (correlating well with measures of loot box engagement; the risky loot box index (r = 0.63) and monthly self-reported spend (r = 0.38)), and good internal validity (Cronbach's alpha = 0.84). Parallels with, and divergence from, motivations for related activities of gaming and gambling, and alignment with broader theoretical models of motivation, are discussed.