The experiences of cardiac arrest survivors and their key supporters following cardiac arrest: A systematic review and meta-ethnography.

AIM: To review qualitative studies on the experience of sudden cardiac arrest survival from the perspective of both survivors and their key supporters, including family/close friends. METHODS: A seven-step meta-ethnography and synthesis of qualitative evidence was undertaken, informed by the Meta-Ethnography Reporting Guidelines (eMERGe). Four major databases were searched (Medline, EMBASE, CINAHL, PsycINFO; January 1995-January 2022, updated July 2023) for qualitative studies exploring survivors' and/or key supporters' experiences of cardiac arrest survival. The Critical Appraisal Skills Programme checklist and Grading of Recommendations Assessment, Development and Evaluation - Confidence in Evidence from Reviews of Qualitative Research (GRADE-CERQual) were applied to evaluate the overall confidence in research findings. Constructs were identified from each paper, informing theme and sub-theme development. RESULTS: From 15,917 unique titles/abstracts and 196 full-text articles, 32 met the inclusion criteria. Three themes captured the survivors' experiences: 1) Making sense of my cardiac arrest; 2) Learning to trust my body and mind; and 3) Re-evaluating my life. A further three themes reflected key supporters' experiences: 1) Emotional turmoil; 2) Becoming a carer: same person but different me; and 3) Engaging with a new and unknown world. However, limited data and some methodological weaknesses in included studies reduced confidence in several themes. The findings were conceived within the overarching concept of 'negotiating a new normal'. CONCLUSIONS: The enduring psychosocial and physical sequelae of cardiac arrest survival substantially impacts the lives of survivors and their key supporters, requiring negotiation of their 'new normality'. The need for sense-making, physical and psychological recovery, and the new roles for key supporters should be strong considerations in the development of future interventions.

Understanding patient experience of distal tibia or ankle fracture: a qualitative systematic review.

To systematically review qualitative studies of patients with distal tibia or ankle fracture, and explore their experience of injury and recovery. We undertook a systematic review of qualitative studies. Five databases were searched from inception to 1 February 2022. All titles and abstracts were screened, and a subset were independently assessed. Methodological quality was appraised using the Critical Appraisal Skills Programme (CASP) checklist. The GRADE-CERQual checklist was used to assign confidence ratings. Thematic synthesis was used to analyze data with the identification of codes which were drawn together to form subthemes and then themes. From 2,682 records, 15 studies were reviewed in full and four included in the review. A total of 72 patients were included across the four studies (47 female; mean age 50 years (17 to 80)). Methodological quality was high for all studies, and the GRADE-CERQual checklist provided confidence that the findings were an adequate representation of patient experience of distal tibia or ankle fracture. A central concept of 'being the same but different' conveyed the substantial disruption to patients' self-identity caused by their injury. Patient experience of 'being the same but different' was expressed through three interrelated themes, with seven subthemes: i) being proactive where persistence, doing things differently and keeping busy prevailed; ii) living with change including symptoms, and living differently due to challenges at work and leisure; and iii) striving for normality, adapting while lacking in confidence, and feeling fearful and concerned about the future. Ankle injuries were disruptive, draining, and impacted on patients' wellbeing. Substantial short- and longer-term challenges were experienced during recovery. Rehabilitation and psychosocial treatment strategies may help to ameliorate these challenges. Patients may benefit from clinicians being cognisant of patient experience when assessing, treating, and discussing expectations and outcomes with patients.

A systematic review of outcome reporting in clinical trials of distal tibia and ankle fractures : the need for a core outcome set.

AIMS: To describe outcome reporting variation and trends in non-pharmacological randomized clinical trials (RCTs) of distal tibia and/or ankle fractures. METHODS: Five electronic databases and three clinical trial registries were searched (January 2000 to February 2022). Trials including patients with distal tibia and/or ankle fractures without concomitant injuries were included. One reviewer conducted all searches, screened titles and abstracts, assessed eligibility, and completed data extraction; a random 10% subset were independently assessed and extracted by a second reviewer at each stage. All extracted outcomes were mapped to a modified version of the International Classification of Functioning, Disability and Health framework. The quality of outcome reporting (reproducibility) was assessed. RESULTS: Overall, 105 trials (n = 16 to 669 participants) from 27 countries were included. Trials compared surgical interventions (n = 62), post-surgical management options (n = 17), rehabilitative interventions (n = 14), surgical versus non-surgical interventions (n = 6), and pre-surgical management strategies (n = 5). In total, 888 outcome assessments were reported across seven domains: 263 assessed body structure or function (85.7% of trials), 136 activities (68.6% of trials), 34 participation (23.8% of trials), 159 health-related quality of life (61.9% of trials), 247 processes of care (80% of trials), 21 patient experiences (15.2% of trials), and 28 economic impact (8.6% of trials). From these, 337 discrete outcomes were described. Outcome reporting was inconsistent across trials. The quality of reporting varied widely (reproducibility ranged 4.8% patient experience to 100% complications). CONCLUSION: Substantial heterogeneity in outcome selection, assessment methods, and reporting quality were described. Despite the large number of outcomes, few are reported across multiple trials. Most outcomes are clinically focused, with little attention to the long-term consequences important to patients. Poor reporting quality reduces confidence in data quality, inhibiting data synthesis by which to inform care decisions. Outcome reporting guidance and standardization, which captures the outcomes that matter to multiple stakeholders, are urgently required.Cite this article: Bone Jt Open 2022;3(10):832-840.

An international collaborative study to co-produce a patient-reported outcome measure of cardiac arrest survivorship and health-related quality of life (CASHQoL): A protocol for developing the long-form measure.

Background: Current measures of health-related quality of life are neither sufficiently sensitive or specific to capture the complex and heterogenous nature of the recovery and survivorship associated with cardiac arrest. To address this critical practice gap, we plan a mixed-methods study to co-produce and evaluate a new cardiac arrest-specific patient/survivor-reported outcome measure (PROM). Methods: International guidelines have informed a two-stage, iterative, and interactive process.Stage one will establish what is important to measure following cardiac arrest. A meta-ethnography of published qualitative research and a qualitative exploration of the experiences of survivors and their key supporters will inform the development of a measurement framework. This will be supplemented by existing, extensive reviews describing concepts that have previously been measured in this population. Focus groups with survivors, key supporters, and healthcare professionals, followed by further interviews with survivors and key supporters, will inform the iterative refinement of the framework, candidate items, and PROM structure.Stage two will involve a psychometric evaluation following completion by a large cohort of survivors. Measurement theory will inform: the identification of items that best measure important outcomes; item reduction; and provide robust evidence of measurement and practical properties. Discussion: An international, collaborative approach to PROM development will engage survivors, key supporters, researchers, and health professionals from study commencement. Successful co-production of the cardiac arrest survivorship and health-related quality of life (CASHQoL) measure will provide a robust, relevant, and internationally applicable measure, suitable for completion by adult survivors, and integration into research, registries, and routine care settings.Ethical approval: University of Warwick Biomedical & Scientific Research Ethics Committee (BSREC 22/20-21 granted 10/11/20).

Development of the Warwick Axial Spondyloarthritis faTigue and Energy questionnaire (WASTEd)-a new patient-reported outcome measure.

Objective: The aim was to co-produce and test a potential new patient-reported outcome measure (PROM), the Warwick Axial Spondyloarthritis faTigue and Energy questionnaire (WASTEd), providing vital qualitative confirmation of conceptual relevance, clarity and acceptability. Methods: Informed by measurement theory, we collaborated with patient partners throughout a three-stage, iterative process of PROM development. In stage 1, informed by patient interviews, reviews exploring patients' fatigue experiences and existing PROMs of fatigue, an initial measurement framework of axial spondyloarthritis (axSpA) fatigue and energy and candidate items were defined. In stage 2, the relevance and acceptability of the measurement framework and candidate items were assessed qualitatively by focus group participants. In stage 3, patients participated in pre-testing interviews to assess item comprehensiveness, relevance, acceptability and comprehensibility. Results: Stage 1 informed the development of an initial five-domain measurement framework with 59 candidate items. In stage 2, five patients and seven health-care professionals participated in four focus groups to derive a 40-item model of fatigue and energy. Collaborative engagement with patient research partners supported refinement of questionnaire structure and content further. Pre-testing with ten patients across two interview rounds in stage 3 produced a four-domain, 30-item long-form questionnaire. Conclusion: An active collaboration with patients and health-care professionals has supported the co-production of a potential new PROM of axSpA fatigue, underpinned by strong evidence of face and content validity. The WASTEd extends the assessment of fatigue beyond severity, highlighting the importance of symptom frequency, energy and self-management. Future research will involve psychometric evaluation, supporting item reduction, structural refinement and confirmation of PROM validity.

Qualitative interview study exploring the patient experience of living with axial spondyloarthritis and fatigue: difficult, demanding and draining.

OBJECTIVE: To explore patients' lived experiences of axial spondyloarthritis (axSpA) and fatigue. DESIGN: Interpretative phenomenological analysis (lived experience) was used as the study design. Analysis drew together codes with similar meaning to create superordinate and subordinate themes. SETTING: Rheumatology departments in three National Health Service Foundation Trusts in the north, midlands and south of England. PARTICIPANTS: A purposive sample of seventeen axSpA patients were recruited. The age range was 22-72 years (median age 46), nine were male and eight, female. RESULTS: A central concept of achieving balance was identified as the active process of integrating axSpA symptoms and fatigue into daily life, working with and not against their condition to lead a fulfilled life. This was conveyed through three superordinate themes: struggling to find energy, engaging in everyday life and persevering through difficulties. Struggling to find energy was the challenge of retaining enough stamina to do things in daily life. Engaging in everyday life highlighted dedication to being active and organised, learning through experience and acceptance of a changed way of being. Persevering through difficulties identified the physical and emotional effort required to keep moving forward and the importance of feeling supported. CONCLUSION: Achieving balance through finding energy, engaging and persevering everyday was fundamental to having the best possible life. The experience of energy emerged as a distinct but related component of fatigue. However, while energy could be maintained or replenished, fatigue was more difficult to overcome and required greater effort. Energy may be a useful indicator of an individual's current state and ability to sustain activities that supports their well-being, such as exercise. Awareness of the elements of achieving balance in axSpA may enable patients and clinicians to work together to tailor treatments to individual patient need.

Do facially disfiguring features influence attention and perception of faces? Evidence from an antisaccade task.

Facial disfigurements can influence how observers attend to and interact with the person, leading to disease-avoidance behaviour and emotions (disgust, threat, fear for contagion). However, it is unclear whether this behaviour is reflected in the effect of the facial stigma on attention and perceptual encoding of facial information. We addressed this question by measuring, in a mixed antisaccade task, observers' speed and accuracy of orienting of visual attention towards or away from peripherally presented upright and inverted unfamiliar faces that had either a realistic looking disease-signalling feature (a skin discolouration), a non-disease-signalling control feature, or no added feature. The presence of a disfiguring or control feature did not influence the orienting of attention (in terms of saccadic latency) towards upright faces, suggesting that avoidance responses towards facial stigma do not occur during covert attention. However, disfiguring and control features significantly reduced the effect of face inversion on saccadic latency, thus suggesting an impact on the holistic processing of facial information. The implications of these findings for the encoding and appraisal of facial disfigurements are discussed.

Measurement-based care training curriculum in psychiatry residency programs: I: Description of the curriculum and demonstration of implementation.

BACKGROUND: Recent literature shows that most practicing psychiatrists do not receive training in measurement-based care (MBC). Among the primary barriers to MBC implementation are the lack of formal training and curriculums. We present the first comprehensive MBC curriculum for use in adult psychiatric practice, and describe how the curriculum is adapted and implemented in psychiatry residency training programs. METHODS: The Standard for Clinicians' Interview in Psychiatry (SCIP) was developed as a measurement-based care tool for clinicians' use. The SCIP is the only instrument that includes 18 reliable and validated clinician-rated scales covering most adult psychiatric disorders. The SCIP has simple, unified rules of measurement that apply to the 18 scales. The MBC curriculum includes 2 instruction manuals, 4 didactic lectures, and 12 videotaped interviews. We describe the annual learning and implementation of MBC curriculum in residency programs. RESULTS: The curriculum implementation at West Virginia University and Delaware Psychiatric Center began in 2019 and is ongoing. We present 3 case demonstrations of the implementation of MBC in clinical settings. CONCLUSIONS: Comprehensive implementation of MBC curriculum in residency programs has the potential to facilitate research and create a "culture" of MBC in future generations of psychiatrists.

Co-producing a multi-stakeholder Core Outcome Set for distal Tibia and Ankle fractures (COSTA): a study protocol.

BACKGROUND: Ankle fracture is a common injury with a strong evidence base focused on effectiveness of treatments. However, there are no reporting guidelines on distal tibia and ankle fractures. This has led to heterogeneity in outcome reporting and consequently, restricted the contribution of evidence syntheses. Over the past decade, core outcome sets have been developed to address this issue and are available for several common fractures, including those of the hip, distal radius, and open tibial fractures. This protocol describes the process to co-produce-with patient partners and other key stakeholders-a multi-stakeholder derived Core Outcome Set for distal Tibia and Ankle fractures (COSTA). The scope of COSTA will be for clinical trials. METHODS: The study will have five-stages which will include the following: (i) systematic reviews of existing qualitative studies and outcome reporting in randomised controlled trial studies to inform a developing list of potential outcome domains; (ii) qualitative interviews (including secondary data) and focus groups with patients and healthcare professionals to explore the impact of ankle fracture and the outcomes that really matter; (iii) generation of meaningful outcome statements with the study team, international advisory group and patient partners; (iv) a multi-round, international e-Delphi study to achieve consensus on the core domain set; and (v) an evidence-based consensus on a core measurement set will be achieved through a structured group consensus meeting, recommending best assessment approaches for each of the domains in the core domain set. DISCUSSION: Development of COSTA will provide internationally endorsed outcome assessment guidance for clinical trials for distal tibia and ankle fractures. This will enhance comparative reviews of interventions, potentially reducing reporting bias and research waste.

Fentanyl Quality Assurance Project Prompted Change in Clinical Workflow and Test Configurations.

BACKGROUND: Deaths attributable to fentanyl (FEN, a synthetic opioid) are high in Appalachia and highest in West Virginia. The goal of the study was to determine FEN prevalence among specimens submitted for definitive opioid testing and monitor responses to provider notifications of unexpected FEN findings during Q1 2020. METHODS: All definitive opioid test data were reviewed daily for FEN signatures in Q1 2020. Unexpected FEN results were communicated to providers and monitored for 10 days to record actions taken. Prevalence data were categorized. Behavioral Medicine (BMED) leaders analyzed January data and implemented FEN screening in the clinic. BMED Q1 clinic visits and order volumes for drug screens were reviewed after Q1. RESULTS: FEN positivity was 11% in Q1; >60% of findings were unexpected. Actions were taken for 54% of notifications in January but only 18% in March. Notifications required 70 hours of combined laboratory effort each month. BMED providers ordered 44% of definitive opioid tests and 69% of definitive FEN tests. Data prompted the addition of FEN to routine drug screen panels in the laboratory, and a 10% random FEN screening rate in the BMED opioid use disorder clinics (COAT). CONCLUSIONS: Prevalence of FEN positivity was higher than initially expected, even for this region in Appalachia. Expanded presence of FEN screening should assist BMED providers with clinical efforts and help identify patients in need of intervention/therapy.

Cannabis and Psychosis Through the Lens of DSM-5.

Evidence for an association between cannabis and psychosis has been documented in literature in many forms including experimental studies, epidemiological data, and case series. The association has implications for psychotic outcomes ranging from mild to severe and occurring over minutes to years. Due to the huge variety of exposures and outcome measures reported, creating a coherent account of all the available information is difficult. A useful way to conceptualize these wide-ranging results is to consider the association between cannabis and psychosis as it occurs within the context of widely used DSM-5 diagnoses. In the present review we examine cannabis/psychosis associations as they pertain to Cannabis Intoxication, Cannabis-Induced Psychotic Disorder, and Schizophrenia. This allows for an understanding of the cannabis and psychosis association along something approaching a continuum. Cannabis intoxication becomes Cannabis-Induced Psychotic Disorder once certain severity and duration criteria are met and Cannabis-Induced Psychotic Disorder is heavily associated with future schizophrenia diagnoses.

Differential impact of disfiguring facial features on overt and covert attention.

Observers can form negative impressions about faces that contain disfiguring features (e.g., scars). Previous research suggests that this might be due to the ability of disfiguring features to capture attention - as evidenced by contrasting observers' responses to faces with or without disfiguring features. This, however, confounds the effects of salience and perceptual interpretation, i.e. whether the feature is seen as integral to the face, or separate from it. Furthermore, it remains unclear to what extent disfiguring features influence covert as well as overt attention. We addressed these issues by studying attentional effects by photographs of unfamiliar faces containing a unilateral disfigurement (a skin discoloration) or a visually similar control feature that was partly occluding the face. Disfiguring and occluding features were first matched for salience (Experiment 1). Experiments 2 and 3 assessed the effect of these features on covert attention in two cueing tasks involving discrimination of a (validly or invalidly cued) target in the presence of, respectively, a peripheral or central distractor face. In both conditions, disfigured and occluded faces did not differ significantly in their impact on response-time costs following invalid cues. In Experiment 4 we compared overt attention to these faces by analysing patterns of eye fixations during an attractiveness rating task. Critically, faces with disfiguring features attracted more fixations on the eyes and incurred a higher number of recurrent fixations compared to faces with salience-matched occluding features. Together, these results suggest a differential impact of disfiguring facial features on overt and covert attention, which is mediated both by the visual salience of such features and by their perceptual interpretation.

Quality and acceptability of patient-reported outcome measures used to assess fatigue in axial spondyloarthritis (axSpA): a systematic review (protocol).

BACKGROUND: The prevalence of axial spondyloarthritis (axSpA) is estimated between 0.15 and 1.2%, with many of those patients experiencing severe fatigue. Current axSpA assessment guidance recommends use of a single-item visual analogue scale for fatigue severity. However, concerns have been raised about the ability of such a limited assessment to identify patients with major fatigue, to detect important change in fatigue or to reflect the multi-dimensional nature of fatigue. The proposed systematic review will identify and evaluate the quality and acceptability of single- and multi-item patient-reported outcome measures (PROMs) used to assess fatigue in axSpA, seeking to make recommendations for the 'best' measures for research and/or clinical practice. METHODS/DESIGN: The review will seek to include published studies which report evidence of the development and/or measurement and/or practical properties of clearly defined and reproducible measures of fatigue following completion by patients with axSpA. Five major databases will be searched from 1980 to August 2017: MEDLINE (OVID), EMBASE (OVID), PsycINFO (OVID), World of Science and CINAHL. Study methodological quality will be assessed against the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist. The measurement and/or practical properties of reviewed measures will be assessed against current international standards. A short list of the 'best'-quality PROMs will be produced. The review will be reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. DISCUSSION: This study will provide the first robust and transparent evaluation of patient-reported measures of fatigue used in the axSpA population, synthesising evidence of quality, relevance and acceptability. The review will benefit patients, clinicians, health professionals and researchers wishing to enhance axSpA-fatigue assessment in routine practice, service evaluation and research. The findings will impact future research which seeks to better understand the nature of axSpA fatigue and evaluate the relative benefit of fatigue-management strategies. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42016042271.

Assessing fatigue in adults with axial spondyloarthritis: a systematic review of the quality and acceptability of patient-reported outcome measures.

OBJECTIVE: The aim was to evaluate the quality and acceptability of patient-reported outcome measures used to assess fatigue in patients with axial spondyloarthritis. METHODS: A two-stage systematic review of major electronic databases (1980-2017) was carried out to: (i) identify measures; and (ii) identify evaluative studies. Study and measurement quality were evaluated following international standards. Measurement content was appraised against a conceptual model of RA-fatigue. RESULTS: From 387 reviewed abstracts, 23 articles provided evidence for nine fatigue-specific measures: 6 multi-item and 3 single-item. No axial spondyloarthritis-fatigue-specific measure was identified. Evidence of reliability was limited, but acceptable for the Multi-dimensional Fatigue Inventory (internal consistency, test-retest) and Short Form 36-item Health Survey Vitality subscale (SF-36 VT; internal consistency). Evidence of construct validity was moderate for the Functional Assessment of Chronic Illness Therapy-Fatigue and 10 cm visual analog scale, limited for the SF-36 VT and not available for the remaining measures. Responsiveness was rarely evaluated. Evidence of measurement error, content validity or structural validity was not identified. Most measures provide a limited reflection of fatigue; the most comprehensive were the Multi-dimensional Assessment of Fatigue, Multi-dimensional Fatigue Inventory-20, Functional Assessment of Chronic Illness Therapy-fatigue and Fatigue Severity Scale. CONCLUSION: The limited content and often poor quality of the reviewed measures limit any clear recommendation for fatigue assessment in this population; assessments should be applied with caution until further robust evidence is established. Well-developed, patient-derived measures can provide essential evidence of the patient's perspective to inform clinical research and drive tailored health care. The collaborative engagement of key stakeholders must seek to ensure that future fatigue assessment is relevant, acceptable and of high quality.

Assessing health-related quality of life (HRQoL) in survivors of out-of-hospital cardiac arrest: A systematic review of patient-reported outcome measures.

AIM: High quality evidence of out-of-hospital cardiac arrest (OHCA) survivors' health-related quality of life (HRQoL) can measure the long-term impact of CA. The aim of this study was to critically appraise the evidence of psychometric quality and acceptability of measures used in the assessment of HRQoL in cardiac arrest survivors. METHODS: Systematic literature searches (2004-2017) and named author searches to identify articles pertaining to the measurement of HRQoL. Data on study quality, measurement and practical properties were extracted and assessed against international standards. RESULTS: From 356 reviewed abstracts, 69 articles were assessed in full. 25 provided evidence for 10 measures of HRQoL: one condition-specific; three generic profile measures; two generic index; and four utility measures. Although limited, evidence for measurement validity was strongest for the HUI3 and SF-36. However, evidence for reliability, content validity, responsiveness and interpretability and acceptability was generally limited or not available in the CA population for all measures. CONCLUSIONS: This review has demonstrated that a measure of quality of life specific to OHCA survivors is not available. Limited evidence of validity exists for one utility measure - the HUI3 - and a generic profile - the SF-36. Robust evidence of the quality and acceptability of HRQoL measures in OHCA was limited or not available. Future collaborative research must seek to urgently establish the relevance and acceptability of these measures to OHCA survivors, to establish robust evidence of essential measurement and practical properties over the short and long-term, and to inform future HRQoL assessment in the OHCA population.