Patient and public involvement in medical performance processes: A systematic review

BACKGROUND: Patient and public involvement (PPI) continues to develop as a central policy agenda in health care. The patient voice is seen as relevant, informative and can drive service improvement. However, critical exploration of PPI's role within monitoring and informing medical performance processes remains limited. OBJECTIVE: To explore and evaluate the contribution of PPI in medical performance processes to understand its extent, purpose and process. SEARCH STRATEGY: The electronic databases PubMed, PsycINFO and Google Scholar were systematically searched for studies published between 2004 and 2018. INCLUSION CRITERIA: Studies involving doctors and patients and all forms of patient input (eg, patient feedback) associated with medical performance were included. DATA EXTRACTION AND SYNTHESIS: Using an inductive approach to analysis and synthesis, a coding framework was developed which was structured around three key themes: issues that shape PPI in medical performance processes; mechanisms for PPI; and the potential impacts of PPI on medical performance processes. MAIN RESULTS: From 4772 studies, 48 articles (from 10 countries) met the inclusion criteria. Findings suggest that the extent of PPI in medical performance processes globally is highly variable and is primarily achieved through providing patient feedback or complaints. The emerging evidence suggests that PPI can encourage improvements in the quality of patient care, enable professional development and promote professionalism. DISCUSSION AND CONCLUSIONS: Developing more innovative methods of PPI beyond patient feedback and complaints may help revolutionize the practice of PPI into a collaborative partnership, facilitating the development of proactive relationships between the medical profession, patients and the public

Patient and public involvement in medical performance processes: A systematic review

BACKGROUND: Patient and public involvement (PPI) continues to develop as a central policy agenda in health care. The patient voice is seen as relevant, informative and can drive service improvement. However, critical exploration of PPI's role within monitoring and informing medical performance processes remains limited. OBJECTIVE: To explore and evaluate the contribution of PPI in medical performance processes to understand its extent, purpose and process. SEARCH STRATEGY: The electronic databases PubMed, PsycINFO and Google Scholar were systematically searched for studies published between 2004 and 2018. INCLUSION CRITERIA: Studies involving doctors and patients and all forms of patient input (eg, patient feedback) associated with medical performance were included. DATA EXTRACTION AND SYNTHESIS: Using an inductive approach to analysis and synthesis, a coding framework was developed which was structured around three key themes: issues that shape PPI in medical performance processes; mechanisms for PPI; and the potential impacts of PPI on medical performance processes. MAIN RESULTS: From 4772 studies, 48 articles (from 10 countries) met the inclusion criteria. Findings suggest that the extent of PPI in medical performance processes globally is highly variable and is primarily achieved through providing patient feedback or complaints. The emerging evidence suggests that PPI can encourage improvements in the quality of patient care, enable professional development and promote professionalism. DISCUSSION AND CONCLUSIONS: Developing more innovative methods of PPI beyond patient feedback and complaints may help revolutionize the practice of PPI into a collaborative partnership, facilitating the development of proactive relationships between the medical profession, patients and the public

High prevalence of early repolarization in the paediatric relatives of sudden arrhythmic death syndrome victims and in normal controls

AIMS: Elevation of the ECG J-point in the inferior and lateral leads (early repolarization) has been described in survivors of ventricular fibrillation (VF) arrest and occurs in adult first-degree relatives of sudden cardiac death (SCD) probands at a frequency significantly greater than in controls, raising the possibility that this could represent an independent risk factor in the aetiology of SCD. However, data on early repolarization in the paediatric population are lacking. This study aimed to assess the prevalence of early repolarization in paediatric first-degree relatives of sudden arrhythmic death syndrome (SADS) victims. METHODS AND RESULTS: Paediatric relatives (aged 1 mV from baseline. The ECGs of 77 consecutive paediatric first-degree relatives of SADS victims from 46 families were reviewed by two assessors. J-point elevation was present in 24 patients (31%) of this patient group compared with the reported prevalence of 5–13% in the published general paediatric population (P = 0.02) and that of 19% in the internal control group (P = 0.07). Subgroup analysis according to J-point elevation and ST segment morphologies showed a significantly higher prevalence of inferior early repolarization 0.1–0.2 mV in the study group compared with controls (75 vs. 38%; P = 0.02). CONCLUSION: Inferolateral J-point elevation occurs in a substantial proportion of paediatric first-degree relatives of SADS probands with a similar prevalence to that described in adults. This suggests that early repolarization could be an important inherited trait when evaluating relatives of SADS victims. However, prospective follow-up of this group of children is important to establish the implication of this finding in future risk stratification, given the apparently high prevalence in normal individuals

New records of snipe eels (Anguilliformes: Nemichthyidae) from the Pacific coast of lower Central America

Background: New records of occurrence of two snipe eels (Avocettina bowersii and Nemichthys scolopaceus), poorly known for the Pacific coast of Costa Rica and Panama are herein reported. Results: Specimens, 45 in total (28 and 17, respectively), were collected between 1972 and 1973 at depths between 295 and 1000 m. Descriptions based on specimens as well as comparative morphometric and distributional information by species are herein presented and discussed. A key to the identification of the eastern Pacific species of the family also is presented. Conclusion: These findings increase the knowledge on the Central American marine ichthyofauna and provide evidence of a broader distributional pattern for these species in the eastern Pacific region.UCR::Vicerrectoría de Investigación::Unidades de Investigación::Ciencias Básicas::Centro de Investigación en Ciencias del Mar y Limnología (CIMAR

Fatigue in primary Sjögren's syndrome (pSS) is associated with lower levels of proinflammatory cytokines: a validation study

Primary Sjögren’s syndrome (pSS) is a chronic autoimmune rheumatic disease with symptoms including dryness, fatigue, and pain. The previous work by our group has suggested that certain proinflammatory cytokines are inversely related to patient-reported levels of fatigue. To date, these findings have not been validated. This study aims to validate this observation. Blood levels of seven cytokines were measured in 120 patients with pSS from the United Kingdom Primary Sjögren’s Syndrome Registry and 30 age-matched healthy non-fatigued controls. Patient-reported scores for fatigue were classified according to severity and compared to cytokine levels using analysis of variance. The differences between cytokines in cases and controls were evaluated using Wilcoxon test. A logistic regression model was used to determine the most important identifiers of fatigue. Five cytokines, interferon-γ-induced protein-10 (IP-10), tumour necrosis factor-α (TNFα), interferon-α (IFNα), interferon-γ (IFN-γ), and lymphotoxin-α (LT-α) were significantly higher in patients with pSS (n = 120) compared to non-fatigued controls (n = 30). Levels of two proinflammatory cytokines, TNF-α (p = 0.021) and LT-α (p = 0.043), were inversely related to patient-reported levels of fatigue. Cytokine levels, disease-specific and clinical parameters as well as pain, anxiety, and depression were used as predictors in our validation model. The model correctly identifies fatigue levels with 85% accuracy. Consistent with the original study, pain, depression, and proinflammatory cytokines appear to be the most powerful predictors of fatigue in pSS. TNF-α and LT-α have an inverse relationship with fatigue severity in pSS challenging the notion that proinflammatory cytokines directly mediate fatigue in chronic immunological conditions

Symptom-based stratification of patients with primary Sjögren's syndrome: multi-dimensional characterisation of international observational cohorts and reanalyses of randomised clinical trials

Background Heterogeneity is a major obstacle to developing effective treatments for patients with primary Sjögren's syndrome. We aimed to develop a robust method for stratification, exploiting heterogeneity in patient-reported symptoms, and to relate these differences to pathobiology and therapeutic response. Methods We did hierarchical cluster analysis using five common symptoms associated with primary Sjögren's syndrome (pain, fatigue, dryness, anxiety, and depression), followed by multinomial logistic regression to identify subgroups in the UK Primary Sjögren's Syndrome Registry (UKPSSR). We assessed clinical and biological differences between these subgroups, including transcriptional differences in peripheral blood. Patients from two independent validation cohorts in Norway and France were used to confirm patient stratification. Data from two phase 3 clinical trials were similarly stratified to assess the differences between subgroups in treatment response to hydroxychloroquine and rituximab. Findings In the UKPSSR cohort (n=608), we identified four subgroups: Low symptom burden (LSB), high symptom burden (HSB), dryness dominant with fatigue (DDF), and pain dominant with fatigue (PDF). Significant differences in peripheral blood lymphocyte counts, anti-SSA and anti-SSB antibody positivity, as well as serum IgG, κ-free light chain, β2-microglobulin, and CXCL13 concentrations were observed between these subgroups, along with differentially expressed transcriptomic modules in peripheral blood. Similar findings were observed in the independent validation cohorts (n=396). Reanalysis of trial data stratifying patients into these subgroups suggested a treatment effect with hydroxychloroquine in the HSB subgroup and with rituximab in the DDF subgroup compared with placebo. Interpretation Stratification on the basis of patient-reported symptoms of patients with primary Sjögren's syndrome revealed distinct pathobiological endotypes with distinct responses to immunomodulatory treatments. Our data have important implications for clinical management, trial design, and therapeutic development. Similar stratification approaches might be useful for patients with other chronic immune-mediated diseases. Funding UK Medical Research Council, British Sjogren's Syndrome Association, French Ministry of Health, Arthritis Research UK, Foundation for Research in Rheumatology

Analysis of shared heritability in common disorders of the brain

ience, this issue p. eaap8757 Structured Abstract INTRODUCTION Brain disorders may exhibit shared symptoms and substantial epidemiological comorbidity, inciting debate about their etiologic overlap. However, detailed study of phenotypes with different ages of onset, severity, and presentation poses a considerable challenge. Recently developed heritability methods allow us to accurately measure correlation of genome-wide common variant risk between two phenotypes from pools of different individuals and assess how connected they, or at least their genetic risks, are on the genomic level. We used genome-wide association data for 265,218 patients and 784,643 control participants, as well as 17 phenotypes from a total of 1,191,588 individuals, to quantify the degree of overlap for genetic risk factors of 25 common brain disorders. RATIONALE Over the past century, the classification of brain disorders has evolved to reflect the medical and scientific communities' assessments of the presumed root causes of clinical phenomena such as behavioral change, loss of motor function, or alterations of consciousness. Directly observable phenomena (such as the presence of emboli, protein tangles, or unusual electrical activity patterns) generally define and separate neurological disorders from psychiatric disorders. Understanding the genetic underpinnings and categorical distinctions for brain disorders and related phenotypes may inform the search for their biological mechanisms. RESULTS Common variant risk for psychiatric disorders was shown to correlate significantly, especially among attention deficit hyperactivity disorder (ADHD), bipolar disorder, major depressive disorder (MDD), and schizophrenia. By contrast, neurological disorders appear more distinct from one another and from the psychiatric disorders, except for migraine, which was significantly correlated to ADHD, MDD, and Tourette syndrome. We demonstrate that, in the general population, the personality trait neuroticism is significantly correlated with almost every psychiatric disorder and migraine. We also identify significant genetic sharing between disorders and early life cognitive measures (e.g., years of education and college attainment) in the general population, demonstrating positive correlation with several psychiatric disorders (e.g., anorexia nervosa and bipolar disorder) and negative correlation with several neurological phenotypes (e.g., Alzheimer's disease and ischemic stroke), even though the latter are considered to result from specific processes that occur later in life. Extensive simulations were also performed to inform how statistical power, diagnostic misclassification, and phenotypic heterogeneity influence genetic correlations. CONCLUSION The high degree of genetic correlation among many of the psychiatric disorders adds further evidence that their current clinical boundaries do not reflect distinct underlying pathogenic processes, at least on the genetic level. This suggests a deeply interconnected nature for psychiatric disorders, in contrast to neurological disorders, and underscores the need to refine psychiatric diagnostics. Genetically informed analyses may provide important "scaffolding" to support such restructuring of psychiatric nosology, which likely requires incorporating many levels of information. By contrast, we find limited evidence for widespread common genetic risk sharing among neurological disorders or across neurological and psychiatric disorders. We show that both psychiatric and neurological disorders have robust correlations with cognitive and personality measures. Further study is needed to evaluate whether overlapping genetic contributions to psychiatric pathology may influence treatment choices. Ultimately, such developments may pave the way toward reduced heterogeneity and improved diagnosis and treatment of psychiatric disorders

The value of orange pulp for milk production /

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