A patient perspective on information provision during the care path of Lentigo Maligna

Patients sometimes experience complex diagnostic and treatment procedures. During these processes, they need to rely on the information provided by the care providers. In particular, if they would like to play an active role in the shared decision-making process, it is important that this information is accessible, complete and understandable. A patient with Lentigo Maligna on the nose has been followed during the process of diagnosis, shared decision-making and treatment. Using the autoethnographical methodology, it was evaluated which sources of information available to the patient contributed to a better understanding, a more active role in the treatment process and a positive experience. Possible improvements are suggested. Experience Framework This article is associated with the Quality & Clinical Excellence lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens

Connectedness of healthcare professionals involved in the treatment of patients with Parkinson's disease: a social networks study

<p>Abstract</p> <p>Background</p> <p>Patients with chronic illness typically receive ambulatory treatment from multiple health professionals. Connectedness between these professionals may influence their clinical decisions and the coordination of patient care. We aimed to describe and analyze connectedness in a regional network of health professionals involved in ambulatory treatment of patients with Parkinson's disease (PD).</p> <p>Methods</p> <p>Observational study with 104 health professionals who had joined a newly established network (ParkinsonNet) were asked to complete a pre-structured form to report on their professional contacts with others in the network. Using social networks methods, network measures were calculated for the total network and for the networks of individual health professionals. We planned to test differences between subgroups of health professionals regarding 12 network measures, using a random permutation method.</p> <p>Results</p> <p>Ninety-six health professionals (92%) provided data on 101 professionals. The reciprocity of reported connections was 0.42 in the network of professional contacts. Measures characterizing the individual networks showed a wide variation; <it>e.g</it>., density varied between 0 and 100% (mean value 28.4%). Health professionals with ≥10 PD patients had higher values on 7 out of 12 network measures compare to those with < 10 PD patients (size, number of connections, two step reach, indegree centrality, outdegree centrality, inreach centrality, betweenness centrality). Primary care professionals had lower values on 11 out of 12 network measures (all but reach efficiency) compared to professionals who were affiliated with a hospital.</p> <p>Conclusions</p> <p>Our measure of professional connectedness proved to be feasible in a regional disease-specific network of health professionals. Network measures describing patterns in the professional contacts showed relevant variation across professionals. A higher caseload and an affiliation with a hospital were associated with stronger connectedness with other health professionals.</p

What is important in evaluating health care quality? An international comparison of user views

BACKGROUND: Quality of care from the perspective of users is increasingly used in evaluating health care performance. Going beyond satisfaction studies, quality of care from the users' perspective is conceptualised in two dimensions: the importance users attach to aspects of care and their actual experience with these aspects. It is well established that health care systems differ in performance. The question in this article is whether there are also differences in what people in different health care systems view as important aspects of health care quality. The aim is to describe and explain international differences in the importance that health care users attach to different aspects of health care. METHODS: Data were used from different studies that all used a version of the QUOTE-questionnaire that measures user views of health care quality in two dimensions: the importance that users attach to aspects of care and their actual experience. Data from 12 European countries and 5133 individuals were used. They were analysed using multi-level analysis. RESULTS: Although most of the variations in importance people attach to aspects of health care is located at the individual level, there are also differences between countries. The ranking of aspects shows similarities. 'My GP should always take me seriously' was in nearly all countries ranked first, while an item about waiting time in the GP's office was always ranked lowest. CONCLUSION: Differences between countries in how health care users value different aspects of care are difficult to explain. Further theorising should take into account that importance and performance ratings are positively related, that people compare their experiences with those of others, and that general and instrumental values might be related through the institutions of the health care system

Reminders make people adhere better to a self-help sleep intervention

The experiment presented in this paper investigated the effects of different kinds of reminders on adherence to automated parts of a cognitive behavioural therapy for insomnia (CBT-I) delivered via a mobile device. Previous studies report that computerized health interventions can be effective. However, treatment adherence is still an issue. Reminders are a simple technique that could improve adherence. A minimal intervention prototype in the realm of sleep treatment was developed to test the effects of reminders on adherence. Two prominent ways to determine the reminder-time are: a) ask users when they want to be reminded, and b) let an algorithm decide when to remind users. The prototype consisted of a sleep diary, a relaxation exercise and reminders. A within subject design was used in which the effect of reminders and two underlying principles were tested by 45 participants that all received the following three different conditions (in random order): a) event-based reminders b) time-based reminders c) no reminders. Both types of reminders improved adherence compared to no reminders. No differences were found between the two types of reminders. Opportunity and self-empowerment could partly mediate adherence to filling out the sleep diary, but not to the number of relaxation exercises conducted. Although the study focussed on CBT-I, we expect that designers of other computerized health interventions benefit from the tested opportunity and self-empowerment principles for reminders to improve adherence, as well

Ambiguity of human gene symbols in LocusLink and MEDLINE: creating an inventory and a disambiguation test collection

Genes are discovered almost on a daily basis and new names have to be found. Although there are guidelines for gene nomenclature, the naming process is highly creative. Human genes are often named with a gene symbol and a longer, more descriptive term; the short form is very often an abbreviation of the long form. Abbreviations in biomedical language are highly ambiguous, i.e., one gene symbol often refers to more than one gene.Using an existing abbreviation expansion algorithm,we explore MEDLINE for the use of human gene symbols derived from LocusLink. It turns out that just over 40% of these symbols occur in MEDLINE, however, many of these occurrences are not related to genes. Along the process of making an inventory, a disambiguation test collection is constructed automatically

Co-occurrence based meta-analysis of scientific texts: retrieving biological relationships between genes

MOTIVATION: The advent of high-throughput experiments in molecular biology creates a need for methods to efficiently extract and use information for large numbers of genes. Recently, the associative concept space (ACS) has been developed for the representation of information extracted from biomedical literature. The ACS is a Euclidean space in which thesaurus concepts are positioned and the distances between concepts indicates their relatedness. The ACS uses co-occurrence of concepts as a source of information. In this paper we evaluate how well the system can retrieve functionally related genes and we compare its performance with a simple gene co-occurrence method. RESULTS: To assess the performance of the ACS we composed a test set of five groups of functionally related genes. With the ACS good scores were obtained for four of the five groups. When compared to the gene co-occurrence method, the ACS is capable of revealing more functional biological relations and can achieve results with less literature available per gene. Hierarchical clustering was performed on the ACS output, as a potential aid to users, and was found to provide useful clusters. Our results suggest that the algorithm can be of value for researchers studying large numbers of genes. AVAILABILITY: The ACS program is available upon request from the authors

MLPAinter for MLPA interpretation: An integrated approach for the analysis, visualisation and data management of Multiplex Ligation-dependent Probe Amplification

Background: Multiplex Ligation-Dependent Probe Amplification (MLPA) is an application that can be used for the detection of multiple chromosomal aberrations in a single experiment. In one reaction, up to 50 different genomic sequences can be analysed. For a reliable work-flow, tools are needed for administrative support, data management, normalisation, visualisation, reporting and interpretation.Results: Here, we developed a data management system, MLPAInter for MLPA interpretation, that is windows executable and has a stand-alone database for monitoring and interpreting the MLPA data stream that is generated from the experimental setup to analysis, quality control and visualisation. A statistical approach is applied for the normalisation and analysis of large series of MLPA traces, making use of multiple control samples and internal controls.Conclusions: MLPAinter visualises MLPA data in plots with information about sample replicates, normalisation settings, and sample characteristics. This integrated approach helps in the automated handling of large series of MLPA data and guarantees a quick and streamlined dataflow from the beginning of an experiment to an authorised report

N-acetylcysteine (NAC) and Hydrogen Sulfide (H₂S) in Coronavirus Disease 2019 (COVID-19)

Significance: Hydrogen sulfide (H2S) is one of the three main gasotransmitters which is endogenously produced in humans and is protective against oxidative stress. Recent findings from studies focusing on coronavirus disease 2019 (COVID-19), caused by the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), shifted our attention to a potential modulatory role of H2S in this viral respiratory disease. Recent Advances: H2S levels at hospital admission may be of importance since this gasotransmitter has been shown to be protective against lung damage through its antiviral, antioxidant and anti-inflammatory actions. Furthermore, many COVID-19 cases have been described demonstrating remarkable clinical improvement upon administration of high doses of N-acetylcysteine (NAC). NAC is a renowned pharmacological antioxidant substance acting as a source of cysteine, thereby promoting endogenous glutathione (GSH) biosynthesis as well as generation of sulfane sulfur species when desulfurated to H2S. Critical Issues: Combining H2S physiology and currently available knowledge of COVID-19, H2S is hypothesized to target three main vulnerabilities of SARS-CoV-2: 1) cell entry through interfering with functional host receptors, 2) viral replication through acting on RNA-dependent RNA-polymerase (RdRp), and 3) the escalation of inflammation to a potentially lethal hyperinflammatory cytokine storm (TLR4 pathway and NLRP3 inflammasome). Future Directions: Dissecting the breakdown of NAC reveals the possibility of increasing endogenous H2S levels, which may provide a convenient rationale for the application of H2S-targeted therapeutics. Further randomized controlled trials (RCT) are warranted to investigate its definitive role

Using contextual queries

Search engines generally treat search requests in isolation. The results for a given query are identical, independent of the user, or the context in which the user made the request. An approach is demonstrated that explores implicit contexts as obtained from a document the user is reading. The approach inserts into an original (web) document functionality to directly activate context driven queries that yield related articles obtained from various information sources

Complexity Reduction of Polymorphic Sequences (CRoPS™): A Novel Approach for Large-Scale Polymorphism Discovery in Complex Genomes

Application of single nucleotide polymorphisms (SNPs) is revolutionizing human bio-medical research. However, discovery of polymorphisms in low polymorphic species is still a challenging and costly endeavor, despite widespread availability of Sanger sequencing technology. We present CRoPS™ as a novel approach for polymorphism discovery by combining the power of reproducible genome complexity reduction of AFLP® with Genome Sequencer (GS) 20/GS FLX next-generation sequencing technology. With CRoPS, hundreds-of-thousands of sequence reads derived from complexity-reduced genome sequences of two or more samples are processed and mined for SNPs using a fully-automated bioinformatics pipeline. We show that over 75% of putative maize SNPs discovered using CRoPS are successfully converted to SNPWave® assays, confirming them to be true SNPs derived from unique (single-copy) genome sequences. By using CRoPS, polymorphism discovery will become affordable in organisms with high levels of repetitive DNA in the genome and/or low levels of polymorphism in the (breeding) germplasm without the need for prior sequence information