Patient-centered professionalism

Introduction: Although the concept of patient-centered professionalism has been defined in the literature and adopted to some extent by key health care regulatory bodies, there has been little research that has identified what the concept means to professionals and patients. Aim: The purpose of this paper is to identify the key concepts of patient-centered professionalism as identified in the literature and to discuss these within the context of existing research across a variety of health care settings. Findings: Key documents have been identified from within nursing, medicine, and pharmacy, which outline what is expected of professionals within these professional groups according to their working practices. Although not defined as patient-centered professionalism, the principles outlined in these documents mirror the definitions of patient-centered professional care defined by Irvine and the Picker Institute and are remarkably similar across the three professions. While patients are identified as being at the heart of health care and professional working practice, research within the fields of community nursing and community pharmacy suggests that patient and professional views diverge as regards what is important, according to different group agendas. In addition, the delivery of patient-centered professional care is often difficult to achieve, due to numerous challenges to the provision of patient-centric care. Conclusion: According to the literature, patient-centered professionalism means putting the patient at the heart of care delivery and working in partnership with the patient to ensure patients are well informed and their care choices are respected. However, limited research has examined what the concept means to patients and health care professionals working with patients and how this fits with literature definitions. Further work is needed to identify aspects of the concept as regards the importance placed on patient-centered professionalism and a mechanism is required for dissemination and integration of the findings to key monitoring and regulatory bodies. Major aspects of the concept, once identified within the various health care arenas, should be incorporated into heath care professional curricula and continued professional development.11 page(s

Qualitative research and its methods in epilepsy: Contributing to an understanding of patients' lived experiences of the disease

This review paper makes the case for the usefulness of qualitative research methods in the context of epilepsy research. It begins with an assessment of the current state of epilepsy literature and identifies gaps especially in the following: research in 'developing' countries and research around surgery for adults with epilepsy. It makes the case that disclosure of people's behaviors, actions, and reactions in different, often complex health-care situations can indicate how they bring meaning to their disease experiences and support needs. It shows the value of encouraging work that clarifies how patients manage their illness and how they understand changes in their health and well-being over the life course of their illness and how health-care professionals and other stakeholder groups care for those with epilepsy. The paper suggests a range of methods for addressing gaps in the literature and highlights a range of data collection, data analysis, and data interpretation and synthesis techniques that are appropriate in this context. It pays particular attention to the strengths of qualitative applications in mixed-methods research using an example from a recent ulcerative colitis drug trial that indicates how they can be integrated into study findings, add rich description, and enhance study outcomes. Ethnographic methodology is also presented, as a way of offering rare access to the 'lived experience' dimension, before the paper concludes with an assessment of the qualitative criteria of credibility, dependability, transferability, and confirmability for judging a study's 'trustworthiness'. The criteria evidence not only the trustworthiness of data and findings but also the ways in which a study has approached any challenges inherent in its research design.7 page(s

The Virtual Electrode Recording Tool for EXtracellular Potentials (VERTEX) Version 2.0: Modelling in vitro electrical stimulation of brain tissue [version 1; peer review: 2 approved]

Neuronal circuits can be modelled in detail allowing us to predict the effects of stimulation on individual neurons. Electrical stimulation of neuronal circuits in vitro and in vivo excites a range of neurons within the tissue and measurements of neural activity, e.g the local field potential (LFP), are again an aggregate of a large pool of cells. The previous version of our Virtual Electrode Recording Tool for EXtracellular Potentials (VERTEX) allowed for the simulation of the LFP generated by a patch of brain tissue. Here, we extend VERTEX to simulate the effect of electrical stimulation through a focal electric field. We observe both direct changes in neural activity and changes in synaptic plasticity. Testing our software in a model of a rat neocortical slice, we determine the currents contributing to the LFP, the effects of paired pulse stimulation to induce short term plasticity (STP), and the effect of theta burst stimulation (TBS) to induce long term potentiation (LTP)

Wider consultation on Pulmonary Rehabilitation for Chronic Obstructive Pulmonary Disease

In this article we examine whether an innovative mixed method approach could highlight the positive and challenging effects of a Pulmonary Rehabilitation Programme (PRP) on the Quality of Life (QOL) of patients with Chronic Obstructive Pulmonary Disease (COPD). In 2012, we conducted three consultation workshops in Mid-West Wales, UK, with COPD patients that participated in a PRP, their significant others (e.g. spouses and partners), and healthcare professionals who delivered the PRP. We found that there was a resounding enthusiasm for the content and impact of the programme, particularly in the areas of: increased patient activity, enhanced patient control and confidence, a greater willingness to self-manage treatment, and an increased sense of group belonging. Seven key themes mattered most to our study participants: the patient, physical health, mental health, the programme, professionals and significant others, knowledge and education, and the future. We used these themes to craft a best-practice outcomes document (template) of the benefits and challenges of the PRP to inform and support future service evaluation and delivery.URN: http://nbn-resolving.de/urn:nbn:de:0114-fqs150179En este artículo examinamos si un innovador enfoque de método mixto podría poner de relieve los efectos positivos y desafiantes de un Programa de Rehabilitación Pulmonar (PRP) en la calidad de vida (CDV) de los pacientes con enfermedad pulmonar obstructiva crónica (EPOC). En 2012, realizamos tres talleres de consulta en el centro-oeste de Gales, Reino Unido, con pacientes con EPOC que participaron en un PRP, con personas importantes para ellos (por ejemplo, cónyuges y parejas), y profesionales de la salud que atienden el PRP. Encontramos que había un entusiasmo muy fuerte por el contenido e impacto del programa, en particular en las áreas de: aumento de la actividad del paciente, mayor control y confianza del paciente, una mayor disposición a autogestionar el tratamiento , y un mayor sentido de pertenencia al grupo. Siete temas importaron más a nuestros participantes del estudio: el paciente, la salud física, la salud mental, el programa, los profesionales y otras personas importantes, conocimientos y educación, y el futuro. Utilizamos estos temas para elaborar una plantilla de las mejores prácticas de los beneficios y desafíos de la PRP, para informar y apoyar la futura evaluación y provisión del servicio.URN: http://nbn-resolving.de/urn:nbn:de:0114-fqs150179In diesem Beitrag beschäftigen wir uns mit einem innovativen Mixed-Methods-Ansatz zur Bewertung der positiven und problematischen Effekte eines Rehabilitationsprogramms, das eine verbesserte Lebensqualität von Patient/innen mit chronisch obstruktiver Lungenerkrankung zum Ziel hatte. Hierzu führten wir 2012 drei Konsultationsworkshops in West-Wales durch mit Patient/innen, die an einem solchen Programm teilgenommen hatten, deren Angehörigen und mit Professionellen, die in dem Programm tätig gewesen waren. Die Resonanz war vergleichsweise enthusiastisch, sowohl was Inhalte und was den Impact des Programms angeht, und zwar vor allem mit Blick auf eine vermehrte Aktivität der Patient/innen, auf deren Kontrollgefühl, Zuversicht und Bereitschaft einer verbesserten Selbstfürsorge sowie ein erhöhtes Zusammengehörigkeitsgefühl. Sieben Schlüsselthemen konnten als besonders relevant für die Untersuchungsteilnehmer/innen herausgearbeitet werden: die Patient/innen, physische Gesundheit, psychische Gesundheit, das Programm, Professionale und Angehörige, Wissen und Bildung sowie die Zukunft. Ausgehend hiervon entwickelten wir einen Best-Practice-Vorschlag für die Konzeption und Durchführung von Folgeprogrammen und -Dienstleistungen.URN: http://nbn-resolving.de/urn:nbn:de:0114-fqs15017

Predicting Surgery Targets in Temporal Lobe Epilepsy through Structural Connectome Based Simulations

Temporal lobe epilepsy (TLE) is a prevalent neurological disorder resulting in disruptive seizures. In the case of drug resistant epilepsy resective surgery is often considered. This is a procedure hampered by unpredictable success rates, with many patients continuing to have seizures even after surgery. In this study we apply a computational model of epilepsy to patient specific structural connectivity derived from diffusion tensor imaging (DTI) of 22 individuals with left TLE and 39 healthy controls. We validate the model by examining patient-control differences in simulated seizure onset time and network location. We then investigate the potential of the model for surgery prediction by performing in silico surgical resections, removing nodes from patient networks and comparing seizure likelihood post-surgery to pre-surgery simulations. We find that, first, patients tend to transit from non-epileptic to epileptic states more often than controls in the model. Second, regions in the left hemisphere (particularly within temporal and subcortical regions) that are known to be involved in TLE are the most frequent starting points for seizures in patients in the model. In addition, our analysis also implicates regions in the contralateral and frontal locations which may play a role in seizure spreading or surgery resistance. Finally, the model predicts that patient-specific surgery (resection areas chosen on an individual, model-prompted, basis and not following a predefined procedure) may lead to better outcomes than the currently used routine clinical procedure. Taken together this work provides a first step towards patient specific computational modelling of epilepsy surgery in order to inform treatment strategies in individuals

Randomized Controlled Trial of a Parenting Program to Reduce the Risk of Child Maltreatment in South Africa

Parenting programs in high-income countries have been shown to reduce the risk of child maltreatment. However, there is limited evidence of their effectiveness in low- and middle-income countries. The objective of this study was to examine the initial effects of a parenting program in reducing the risk of child maltreatment in highly-deprived and vulnerable communities in Cape Town, South Africa. Low-income parents (N = 68) with children aged three to eight years were randomly assigned to either a group-based parenting program or a wait-list control group. Observational and parent-report assessments were taken at baseline and at immediate post-test after the intervention was delivered. Primary outcomes were parent-report and observational assessments of harsh parenting, positive parenting, and child behavior problems. Secondary outcomes were parent-report assessments of parental depression, parenting stress, and social support. Results indicated moderate treatment effects for increased frequency of parent-report of positive parenting (d = 0.63) and observational assessments of parent-child play (d = 0.57). Observational assessments also found moderate negative treatment effects for less frequent positive child behavior (d = −0.56). This study is the first randomized controlled trial design to rigorously test the effectiveness of a parenting program on reducing the risk of child maltreatment in sub-Saharan Africa using both observational and self-report assessments. Results provide preliminary evidence of effectiveness of reducing the risk of child maltreatment by improving positive parenting behavior. Further development is required to strengthen program components regarding child behavior management and nonviolent discipline strategies. Future research would benefit from a larger trial with sufficient power to determine program effectiveness

Barriers and facilitators to change in the organisation and delivery of endoscopy services in England and Wales: a focus group study

Objective: Explore professional views of changes to gastroenterology service organisation and delivery and barriers and facilitators impacting on change. The work was undertaken as part of an evaluation in endoscopy service provision catalysed by the Modernising Endoscopy Services Programme of the Modernisation Agency. Design: Focus groups followed by analysis and group-working activities identifying key themes. Setting: English and Welsh secondary care gastroenterology units. Participants: 20 professionals working in gastroenterology in England and Wales. Medical, surgical and nursing specialists including endoscopy nurses. Opportunistic sampling to include senior people in leadership and management roles who were directly involved in service modernisation, excluding those involved in the Modernisation Endoscopy Services Programme. Results: Four 1.5 h focus groups took place in 2007. Summative and thematic analyses captured essential aspects of text and achieved consensus on key themes. 4 themes were revealed: 'loss of personal autonomy and erosion of professionalism', 'lack of senior management understanding', 'barriers and facilitators to change' and 'differences between English and Welsh units'. Themes indicated that low staff morale, lack of funding and senior management support were barriers to effective change. Limitations to the study include the disproportionately low number of focus group attendees from English units and the time delay in reporting these findings. Conclusions: Despite ambitions to implement change, ineffective management support continued to hamper modernisation of service organisation and delivery. While the National Health Service Modernisation Agency Modernising Endoscopy Services Programme acted as a catalyst for change, affecting the way staff work, communicate and think, it was not effective in heralding change itself. However, gastroenterologists were keen to consider the potential for change and future service modernisation. The methodological framework of innovative qualitative enquiry offers comprehensive and rigorous enhancement of quantitative studies, including randomised trials, when a mixed methods approach is needed.7 page(s

Exploring qualitative methods reported in registered trials and their yields (EQUITY):systematic review

Abstract Background The value of qualitative methods within trials is widely recognised, but their full potential is not being realised. There are also issues with the visibility, recognition and reporting of qualitative methods in trials. To identify potential improvements in qualitative research within trials, we need to study trials that have included qualitative methods. We aimed to explore the frequency of reporting qualitative methods in registered trials, the types of trials using qualitative methods and where in the world these trials were conducted. Methods We included registries if they were searchable using keywords and held summaries of trials rather than listing reports or publications. We searched the included registries from the first available record in 1999 to the end of 2016 for the term ‘qualitative’. We included trials only if we could confirm that they used qualitative methods through documented use of qualitative data collection and analysis in the registry summary. We analysed registered trials reporting the use of qualitative methods by: year registered, the country responsible for overseeing governance of the trial and the type of trial intervention (categorised as surgical, medical device, behavioural, drug or other). Results We included three registries: ClinicalTrials.gov, the International Standard Randomised Controlled Trial Number Registry (ISRCTN) and the World Health Organisation International Clinical Trials Registry Platform (WHO ICTRP). A total of 615,311 trials appear in these three registries from 1999 until the end of 2016. Numbers differed across registries with the WHO ICTRP the largest (366,753 trials), ClinicalTrials.gov the second largest (233,277) and ISRCTN the smallest (15,301). Of these registered trials, we confirmed that 1492 (0.24%) reported using qualitative methods. The ISRCTN contributed the highest percentage of trials reported as using qualitative methods (3.4%); in contrast, ClinicalTrials.gov reported 0.3% and WHO ICTRP reported 0.03%. The number and percentage of trials reported to use qualitative methods increased over time from 0 (0.0%) in 1999 to 285 (0.38%) in 2016. Trials reported as using qualitative methods originated from 52 countries across the world. Most were in Western higher-income countries: 38% in the United Kingdom and 28% in the United States. Most registered trials reported as using qualitative methods evaluated behavioural (39%) or other interventions with many fewer trials evaluating drugs (5%), medical devices (5%) or surgical interventions (4%). Conclusion The reported use of qualitative methods in registered trials has increased over time and worldwide. They are reportedly more frequent in high-income countries and in trials of behavioural and other interventions. Trialists and other stakeholders need to recognise the benefits of using qualitative methods in surgical, device and drug trials, and trials conducted in poorer countries. Moreover, they should seriously consider using qualitative methods in these trials