Patient-reported outcomes in integrated health and social care: A scoping review.

Background: Patient-reported outcomes (PROs) have potential to support integrated health and social care research and practice; however, evidence of their utilisation has not been synthesised. Objective: To identify PRO measures utilised in integrated care and adult social care research and practice and to chart the evidence of implementation factors influencing their uptake. Design: Scoping review of peer-reviewed literature. Data sources: Six databases (01 January 2010 to 19 May 2023). Study selection: Articles reporting PRO use with adults (18+ years) in integrated care or social care settings. Review methods: We screened articles against pre-specified eligibility criteria; 36 studies (23%) were extracted in duplicate for verification. We summarised the data using thematic analysis and descriptive statistics. Results: We identified 159 articles reporting on 216 PRO measures deployed in a social care or integrated care setting. Most articles used PRO measures as research tools. Eight (5.0%) articles used PRO measures as an intervention. Articles focused on community-dwelling participants (35.8%) or long-term care home residents (23.9%), with three articles (1.9%) focussing on integrated care settings. Stakeholders viewed PROs as feasible and acceptable, with benefits for care planning, health and wellbeing monitoring as well as quality assurance. Patient-reported outcome measure selection, administration and PRO data management were perceived implementation barriers. Conclusion: This scoping review showed increasing utilisation of PROs in adult social care and integrated care. Further research is needed to optimise PROs for care planning, design effective training resources and develop policies and service delivery models that prioritise secure, ethical management of PRO data.

Recommendations to address respondent burden associated with patient-reported outcome assessment.

Patient-reported outcomes (PROs) are increasingly used in healthcare research to provide evidence of the benefits and risks of interventions from the patient perspective and to inform regulatory decisions and health policy. The use of PROs in clinical practice can facilitate symptom monitoring, tailor care to individual needs, aid clinical decision-making and inform value-based healthcare initiatives. Despite their benefits, there are concerns that the potential burden on respondents may reduce their willingness to complete PROs, with potential impact on the completeness and quality of the data for decision-making. We therefore conducted an initial literature review to generate a list of candidate recommendations aimed at reducing respondent burden. This was followed by a two-stage Delphi survey by an international multi-stakeholder group. A consensus meeting was held to finalize the recommendations. The final consensus statement includes 19 recommendations to address PRO respondent burden in healthcare research and clinical practice. If implemented, these recommendations may reduce PRO respondent burden.

Using XR (Extended Reality) for Behavioral, Clinical, and Learning Sciences Requires Updates in Infrastructure and Funding.

Extended reality (XR, including augmented and virtual reality) creates a powerful intersection between information technology and cognitive, clinical, and education sciences. XR technology has long captured the public imagination, and its development is the focus of major technology companies. This article demonstrates the potential of XR to (1) deliver behavioral insights, (2) transform clinical treatments, and (3) improve learning and education. However, without appropriate policy, funding, and infrastructural investment, many research institutions will struggle to keep pace with the advances and opportunities of XR. To realize the full potential of XR for basic and translational research, funding should incentivize (1) appropriate training, (2) open software solutions, and (3) collaborations between complementary academic and industry partners. Bolstering the XR research infrastructure with the right investments and incentives is vital for delivering on the potential for transformative discoveries, innovations, and applications.

Global use of electronic patient-reported outcome systems in nephrology: a mixed methods study.

OBJECTIVES: The use of electronic patient-reported outcome (ePRO) systems to support the management of patients with chronic kidney disease is increasing. This mixed-methods study aimed to comprehensively identify existing and developing ePRO systems, used in nephrology settings globally, ascertaining key characteristics and factors for successful implementation. STUDY DESIGN: ePRO systems and developers were identified through a scoping review of the literature and contact with field experts. Developers were invited to participate in a structured survey, to summarise key system characteristics including: (1) system objectives, (2) population, (3) PRO measures used, (4) level of automation, (5) reporting, (6) integration into workflow and (7) links to electronic health records/national registries. Subsequent semistructured interviews were conducted to explore responses. SETTING AND PARTICIPANTS: Eligible systems included those being developed or used in nephrology settings to assess ePROs and summarise results to care providers. System developers included those with a key responsibility for aspects of the design, development or implementation of an eligible system. ANALYTICAL APPROACH: Structured survey data were summarised using descriptive statistics. Interview transcripts were analysed using Codebook Thematic Analysis using domains from the Consolidated Framework for Implementation Research. RESULTS: Fifteen unique ePRO systems were identified across seven countries; 10 system developers completed the structured survey and 7 participated in semistructured interviews. Despite system heterogeneity, reported features required for effective implementation included early and sustained patient involvement, clinician champions and expanding existing electronic platforms to integrate ePROs. Systems demonstrated several common features, with the majority being implemented within research settings, thereby affecting system implementation readiness for real-world application. CONCLUSIONS: There has been considerable research investment in ePRO systems. The findings of this study outline key system features and factors to support the successful implementation of ePROs in routine kidney care.Cite Now.

Reading the room: Autistic traits, gaze behaviour, and the ability to infer social relationships.

Individuals high in autistic traits can have difficulty understanding verbal and non-verbal cues, and may display atypical gaze behaviour during social interactions. The aim of this study was to examine differences among neurotypical individuals with high and low levels of autistic traits with regard to their gaze behaviour and their ability to assess peers' social status accurately. Fifty-four university students who completed the 10-item Autism Quotient (AQ-10) were eye-tracked as they watched six 20-second video clips of people ("targets") involved in a group decision-making task. Simulating natural, everyday social interactions, the video clips included moments of debate, humour, interruptions, and cross talk. Results showed that high-scorers on the AQ-10 (i.e., those with more autistic traits) did not differ from the low-scorers in either gaze behaviour or assessing the targets' relative social status. The results based on this neurotypical group of participants suggest that the ability of individuals high in autistic traits to read social cues may be preserved in certain tasks crucial to navigating day-to-day social relationships. These findings are discussed in terms of their implications for theory of mind, weak central coherence, and social motivation theories of autism.

Eye and head movements while encoding and recognizing panoramic scenes in virtual reality.

One approach to studying the recognition of scenes and objects relies on the comparison of eye movement patterns during encoding and recognition. Past studies typically analyzed the perception of flat stimuli of limited extent presented on a computer monitor that did not require head movements. In contrast, participants in the present study saw omnidirectional panoramic scenes through an immersive 3D virtual reality viewer, and they could move their head freely to inspect different parts of the visual scenes. This allowed us to examine how unconstrained observers use their head and eyes to encode and recognize visual scenes. By studying head and eye movement within a fully immersive environment, and applying cross-recurrence analysis, we found that eye movements are strongly influenced by the content of the visual environment, as are head movements-though to a much lesser degree. Moreover, we found that the head and eyes are linked, with the head supporting, and by and large mirroring the movements of the eyes, consistent with the notion that the head operates to support the acquisition of visual information by the eyes.

Eye Tracking in Virtual Reality.

This chapter explores the current state of the art in eye tracking within 3D virtual environments. It begins with the motivation for eye tracking in Virtual Reality (VR) in psychological research, followed by descriptions of the hardware and software used for presenting virtual environments as well as for tracking eye and head movements in VR. This is followed by a detailed description of an example project on eye and head tracking while observers look at 360° panoramic scenes. The example is illustrated with descriptions of the user interface and program excerpts to show the measurement of eye and head movements in VR. The chapter continues with fundamentals of data analysis, in particular methods for the determination of fixations and saccades when viewing spherical displays. We then extend these methodological considerations to determining the spatial and temporal coordination of the eyes and head in VR perception. The chapter concludes with a discussion of outstanding problems and future directions for conducting eye- and head-tracking research in VR. We hope that this chapter will serve as a primer for those intending to implement VR eye tracking in their own research.

Eye spy: Gaze communication and deception during hide-and-seek.

Gaze behaviour is an important component of successful social interactions. Existing research on social gaze and attention has largely focused on gaze detection and following, rather than the two-way communicative component of gaze that operates between individuals. The present study sought to address this in two experiments. First, "hiders" were eye-tracked while they selected hiding places among a grid of boxes on a computer screen; these boxes were either homogeneous or contained a visually unique pop-out item. Importantly, sometimes hiders believed that their gaze would be seen by hypothetical "seekers" who they might wish to deceive or communicate truthful information to; and sometime hiders believed that their gaze would be concealed. In a second experiment, seekers were asked to select the hiders' locations after viewing the hiders' gaze behaviour, including the eye movements that hiders had been (falsely) told would be concealed. Results indicate that seekers are most accurate when hiders use their gaze to truthfully communicate their selected locations and least accurate when hiders aim to deceive. Notably, both communication and interpretation strategies were affected by the visual display type (e.g., hiders looked to and preferentially selected pop-out items when communicating truthfully while seekers interpreted gaze differently when allocated to these pop-out items), indicating that the visual context can be integrated with gaze to facilitate mis/communication. Our study illuminates how the gaze of an individual acquires and signals information, and that individuals will spontaneously adjust the balance between these two functions based on their current goal and visual environment.

Ethical Considerations for the Inclusion of Patient-Reported Outcomes in Clinical Research: The PRO Ethics Guidelines.

Importance: Patient-reported outcomes (PROs) can inform health care decisions, regulatory decisions, and health care policy. They also can be used for audit/benchmarking and monitoring symptoms to provide timely care tailored to individual needs. However, several ethical issues have been raised in relation to PRO use. Objective: To develop international, consensus-based, PRO-specific ethical guidelines for clinical research. Evidence Review: The PRO ethics guidelines were developed following the Enhancing the Quality and Transparency of Health Research (EQUATOR) Network's guideline development framework. This included a systematic review of the ethical implications of PROs in clinical research. The databases MEDLINE (Ovid), Embase, AMED, and CINAHL were searched from inception until March 2020. The keywords patient reported outcome* and ethic* were used to search the databases. Two reviewers independently conducted title and abstract screening before full-text screening to determine eligibility. The review was supplemented by the SPIRIT-PRO Extension recommendations for trial protocol. Subsequently, a 2-round international Delphi process (n = 96 participants; May and August 2021) and a consensus meeting (n = 25 international participants; October 2021) were held. Prior to voting, consensus meeting participants were provided with a summary of the Delphi process results and information on whether the items aligned with existing ethical guidance. Findings: Twenty-three items were considered in the first round of the Delphi process: 6 relevant candidate items from the systematic review and 17 additional items drawn from the SPIRIT-PRO Extension. Ninety-six international participants voted on the relevant importance of each item for inclusion in ethical guidelines and 12 additional items were recommended for inclusion in round 2 of the Delphi (35 items in total). Fourteen items were recommended for inclusion at the consensus meeting (n = 25 participants). The final wording of the PRO ethical guidelines was agreed on by consensus meeting participants with input from 6 additional individuals. Included items focused on PRO-specific ethical issues relating to research rationale, objectives, eligibility requirements, PRO concepts and domains, PRO assessment schedules, sample size, PRO data monitoring, barriers to PRO completion, participant acceptability and burden, administration of PRO questionnaires for participants who are unable to self-report PRO data, input on PRO strategy by patient partners or members of the public, avoiding missing data, and dissemination plans. Conclusions and Relevance: The PRO ethics guidelines provide recommendations for ethical issues that should be addressed in PRO clinical research. Addressing ethical issues of PRO clinical research has the potential to ensure high-quality PRO data while minimizing participant risk, burden, and harm and protecting participant and researcher welfare.

Symptom burden and health-related quality of life in chronic kidney disease: A global systematic review and meta-analysis.

BACKGROUND: The importance of patient-reported outcome measurement in chronic kidney disease (CKD) populations has been established. However, there remains a lack of research that has synthesised data around CKD-specific symptom and health-related quality of life (HRQOL) burden globally, to inform focused measurement of the most relevant patient-important information in a way that minimises patient burden. The aim of this review was to synthesise symptom prevalence/severity and HRQOL data across the following CKD clinical groups globally: (1) stage 1-5 and not on renal replacement therapy (RRT), (2) receiving dialysis, or (3) in receipt of a kidney transplant. METHODS AND FINDINGS: MEDLINE, PsycINFO, and CINAHL were searched for English-language cross-sectional/longitudinal studies reporting prevalence and/or severity of symptoms and/or HRQOL in CKD, published between January 2000 and September 2021, including adult patients with CKD, and measuring symptom prevalence/severity and/or HRQOL using a patient-reported outcome measure (PROM). Random effects meta-analyses were used to pool data, stratified by CKD group: not on RRT, receiving dialysis, or in receipt of a kidney transplant. Methodological quality of included studies was assessed using the Joanna Briggs Institute Critical Appraisal Checklist for Studies Reporting Prevalence Data, and an exploration of publication bias performed. The search identified 1,529 studies, of which 449, with 199,147 participants from 62 countries, were included in the analysis. Studies used 67 different symptom and HRQOL outcome measures, which provided data on 68 reported symptoms. Random effects meta-analyses highlighted the considerable symptom and HRQOL burden associated with CKD, with fatigue particularly prevalent, both in patients not on RRT (14 studies, 4,139 participants: 70%, 95% CI 60%-79%) and those receiving dialysis (21 studies, 2,943 participants: 70%, 95% CI 64%-76%). A number of symptoms were significantly (p < 0.05 after adjustment for multiple testing) less prevalent and/or less severe within the post-transplantation population, which may suggest attribution to CKD (fatigue, depression, itching, poor mobility, poor sleep, and dry mouth). Quality of life was commonly lower in patients on dialysis (36-Item Short Form Health Survey [SF-36] Mental Component Summary [MCS] 45.7 [95% CI 45.5-45.8]; SF-36 Physical Component Summary [PCS] 35.5 [95% CI 35.3-35.6]; 91 studies, 32,105 participants for MCS and PCS) than in other CKD populations (patients not on RRT: SF-36 MCS 66.6 [95% CI 66.5-66.6], p = 0.002; PCS 66.3 [95% CI 66.2-66.4], p = 0.002; 39 studies, 24,600 participants; transplant: MCS 50.0 [95% CI 49.9-50.1], p = 0.002; PCS 48.0 [95% CI 47.9-48.1], p = 0.002; 39 studies, 9,664 participants). Limitations of the analysis are the relatively few studies contributing to symptom severity estimates and inconsistent use of PROMs (different measures and time points) across the included literature, which hindered interpretation. CONCLUSIONS: The main findings highlight the considerable symptom and HRQOL burden associated with CKD. The synthesis provides a detailed overview of the symptom/HRQOL profile across clinical groups, which may support healthcare professionals when discussing, measuring, and managing the potential treatment burden associated with CKD. PROTOCOL REGISTRATION: PROSPERO CRD42020164737.

Results of a pilot feasibility randomised controlled trial exploring the use of an electronic patient-reported outcome measure in the management of UK patients with advanced chronic kidney disease.

OBJECTIVES: The use of routine remote follow-up of patients with chronic kidney disease (CKD) is increasing exponentially. It has been suggested that online electronic patient-reported outcome measures (ePROMs) could be used in parallel, to facilitate real-time symptom monitoring aimed at improving outcomes. We tested the feasibility of this approach in a pilot trial of ePROM symptom monitoring versus usual care in patients with advanced CKD not on dialysis. DESIGN: A 12-month, parallel, pilot randomised controlled trial (RCT) and qualitative substudy. SETTING AND PARTICIPANTS: Queen Elizabeth Hospital Birmingham, UK. Adult patients with advanced CKD (estimated glomerular filtration rate ≥6 and ≤15 mL/min/1.73 m2, or a projected risk of progression to kidney failure within 2 years ≥20%). INTERVENTION: Monthly online ePROM symptom reporting, including automated feedback of tailored self-management advice and triggered clinical notifications in the advent of severe symptoms. Real-time ePROM data were made available to the clinical team via the electronic medical record. OUTCOMES: Feasibility (recruitment and retention rates, and acceptability/adherence to the ePROM intervention). Health-related quality of life, clinical data (eg, measures of kidney function, kidney failure, hospitalisation, death) and healthcare utilisation. RESULTS: 52 patients were randomised (31% of approached). Case report form returns were high (99.5%), as was retention (96%). Overall, 73% of expected ePROM questionnaires were received. Intervention adherence was high beyond 90 days (74%) and 180 days (65%); but dropped beyond 270 days (46%). Qualitative interviews supported proof of concept and intervention acceptability, but highlighted necessary changes aimed at enhancing overall functionality/scalability of the ePROM system. LIMITATIONS: Small sample size. CONCLUSIONS: This pilot trial demonstrates that patients are willing to be randomised to a trial assessing ePROM symptom monitoring. The intervention was considered acceptable; though measures to improve longer-term engagement are needed. A full-scale RCT is considered feasible. TRIAL REGISTRATION NUMBER: ISRCTN12669006 and the UK NIHR Portfolio (CPMS ID: 36497).

Scene meaningfulness guides eye movements even during mind-wandering.

During scene viewing, semantic information in the scene has been shown to play a dominant role in guiding fixations compared to visual salience (e.g., Henderson & Hayes, 2017). However, scene viewing is sometimes disrupted by cognitive processes unrelated to the scene. For example, viewers sometimes engage in mind-wandering, or having thoughts unrelated to the current task. How do meaning and visual salience account for fixation allocation when the viewer is mind-wandering, and does it differ from when the viewer is on-task? We asked participants to study a series of real-world scenes in preparation for a later memory test. Thought probes occasionally occurred after a subset of scenes to assess whether participants were on-task or mind-wandering. We used salience maps (Graph-Based Visual Saliency; Harel, Koch, & Perona, 2007) and meaning maps (Henderson & Hayes, 2017) to represent the distribution of visual salience and semantic richness in the scene, respectively. Because visual salience and meaning were represented similarly, we could directly compare how well they predicted fixation allocation. Our results indicate that fixations prioritized meaningful over visually salient regions in the scene during mind-wandering just as during attentive viewing. These results held across the entire viewing time. A re-analysis of an independent study (Krasich, Huffman, Faber, & Brockmole Journal of Vision, 20(9), 10, 2020) showed similar results. Therefore, viewers appear to prioritize meaningful regions over visually salient regions in real-world scenes even during mind-wandering.

Using patient-reported outcome measures during the management of patients with end-stage kidney disease requiring treatment with haemodialysis (PROM-HD): a qualitative study.

OBJECTIVES: Patients undergoing haemodialysis report elevated symptoms and reduced health-related quality of life, and often prioritise improvements in psychosocial well-being over long-term survival. Systematic collection and use of patient-reported outcomes (PROs) may help support tailored healthcare and improve outcomes. This study investigates the methodological basis for routine PRO assessment, particularly using electronic formats (ePROs), to maximise the potential of PRO use, through exploration of the experiences, views and perceptions of patients and healthcare professionals (HCPs) on implementation and use of PROs in haemodialysis settings. STUDY DESIGN: Qualitative study. SETTING AND PARTICIPANTS: Semistructured interviews with 22 patients undergoing haemodialysis, and 17 HCPs in the UK. ANALYTICAL APPROACH: Transcripts were analysed deductively using the Consolidated Framework for Implementation Research (CFIR) and inductively using thematic analysis. RESULTS: For effective implementation, the potential value of PROs needs to be demonstrated empirically to stakeholders. Any intervention must remain flexible enough for individual and aggregate use, measuring outcomes that matter to patients and clinicians, while maintaining operational simplicity. Any implementation must sit within a wider framework of education and support for both patients and clinicians who demonstrate varying previous experience of using PROs and often confuse related concepts. Implementation plans must recognise the multidimensionality of end-stage kidney disease and treatment by haemodialysis, while acknowledging the associated challenges of delivering care in a highly specialised environment. To support implementation, careful consideration needs to be given to barriers and facilitators including effective leadership, the role of champions, effective launch and ongoing evaluation. CONCLUSIONS: Using the CFIR to explore the experiences, views and perceptions of key stakeholders, this study identified key factors at organisational and individual levels which could assist effective implementation of ePROs in haemodialysis settings. Further research will be required to evaluate subsequent ePRO interventions to demonstrate the impact and benefit to the dialysis community.

Social modulation of on-screen looking behaviour.

While passive social information (e.g. pictures of people) routinely draws one's eyes, our willingness to look at live others is more nuanced. People tend not to stare at strangers and will modify their gaze behaviour to avoid sending undesirable social signals; yet they often continue to monitor others covertly "out of the corner of their eyes." What this means for looks that are being made near to live others is unknown. Will the eyes be drawn towards the other person, or pushed away? We evaluate changes in two elements of gaze control: image-independent principles guiding how people look (e.g. biases to make eye movements along the cardinal directions) and image-dependent principles guiding what people look at (e.g. a preference for meaningful content within a scene). Participants were asked to freely view semantically unstructured (fractals) and semantically structured (rotated landscape) images, half of which were located in the space near to a live other. We found that eye movements were horizontally displaced away from a visible other starting at 1032 ms after stimulus onset when fractals but not landscapes were viewed. We suggest that the avoidance of looking towards live others extends to the near space around them, at least in the absence of semantically meaningful gaze targets.

Refixation patterns of mind-wandering during real-world scene perception.

Recent studies have shown that mind-wandering (MW) is associated with changes in eye movement parameters, but have not explored how MW affects the sequential pattern of eye movements involved in making sense of complex visual information. Eye movements naturally unfold over time and this process may reveal novel information about cognitive processing during MW. The current study used Recurrence Quantification Analysis (Anderson, Bischof, Laidlaw, Risko, & Kingstone, 2013) to describe the pattern of refixations (fixations directed to previously inspected regions) during MW. Participants completed a real-world scene encoding task and responded to thought probes assessing intentional and unintentional MW. Both types of MW were associated with worse memory of the scenes. More important, RQA showed that scanpaths during unintentional MW were more repetitive than during on-task episodes, as indicated by a higher recurrence rate and more stereotypical fixation sequences. This increased repetitiveness suggests an adaptive response to processing failures through reexamining previous locations. Moreover, this increased repetitiveness contributed to fixations focusing on a smaller spatial scale of the stimuli. Finally, we were also able to validate several traditional measures: both intentional and unintentional MW were associated with fewer and longer fixations; eye-blinking increased numerically during both types of MW but the difference was only significant for unintentional MW. Overall, the results advanced our understanding of how visual processing is affected during MW by highlighting the sequential aspect of eye movements. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

Development of an electronic patient-reported outcome measure (ePROM) system to aid the management of patients with advanced chronic kidney disease.

BACKGROUND: Effective management of patients with chronic kidney disease (CKD) relies on timely detection of clinical deterioration towards end stage kidney failure. We aimed to design an electronic Patient-Reported Outcome Measure (ePROM) system, which would allow patients with advanced CKD (pre-dialysis) to: (i) remotely self-report their symptoms using a simple and secure online platform; (ii) share the data with the clinical team in real-time via the electronic patient record to help optimise care. We adopted a staged development process which included: a systematic review of PROMs used in CKD; formation of a co-design team; prototype system design/development, user acceptance testing and refinement; finalisation of the system for testing in a pilot/feasibility trial. RESULTS: A co-design team was convened, including patients with lived experience of CKD; clinical team members; IT/Informatics experts; academics; and Birmingham Clinical Trials Unit representatives. A prototype system was developed and iterative changes made before finalisation during a series of operational meetings. The system allows patients to remotely self-report their symptoms; provides tailored self-management advice; allows monitoring of real-time patient ePROM data; sends automated notifications to the patient/clinical team in the advent of a severe symptom report; and incorporates longitudinal ePROM symptom data into the electronic patient record. Feasibility of the system will be evaluated as part of the National Institute for Health Research funded RePROM (Renal electronic Patient-Reported Outcome Measure) pilot trial (ISRCTN12669006). CONCLUSIONS: Routine ePROM collection with real-time feedback has the potential to improve outcomes and reduce health service costs. We have successfully developed a trial-ready ePROM system for advanced CKD, the feasibility of which is currently being explored in a pilot trial. Assuming feasibility is demonstrated, formal evaluation of efficacy will take place in a future multi-centre randomised controlled trial.