Everyday Patient Care Research Articles

How Informal Carers Support Video Consulting in Physiotherapy, Heart Failure, and Cancer: Qualitative Study Using Linguistic Ethnography.

Informal carers play an important role in the everyday care of patients and the delivery of health care services. They aid patients in transportation to and from appointments, and they provide assistance during the appointments (eg, answering questions on the patient's behalf). Video consultations are often seen as a way of providing patients with easier access to care. However, few studies have considered how this affects the role of informal carers and how they are needed to make video consultations safe and feasible. This study aims to identify how informal carers, usually friends or family who provide unpaid assistance, support patients and clinicians during video consultations. We conducted an in-depth analysis of the communication in a sample of video consultations drawn from 7 clinical settings across 4 National Health Service Trusts in the United Kingdom. The data set consisted of 52 video consultation recordings (of patients with diabetes, gestational diabetes, cancer, heart failure, orthopedic problems, long-term pain, and neuromuscular rehabilitation) and interviews with all participants involved in these consultations. Using Linguistic Ethnography, which embeds detailed analysis of verbal and nonverbal communication in the context of the interaction, we examined the interactional, technological, and clinical work carers did to facilitate video consultations and help patients and clinicians overcome challenges of the remote and video-mediated context. Most patients (40/52, 77%) participated in the video consultation without support from an informal carer. Only 23% (12/52) of the consultations involved an informal carer. In addition to facilitating the clinical interaction (eg, answering questions on behalf of the patient), we identified 3 types of work that informal carers did: facilitating the use of technology; addressing problems when the patient could not hear or understand the clinician; and assisting with physical examinations, acting as the eyes, ears, and hands of the clinician. Carers often stayed in the background, monitoring the consultation to identify situations where they might be needed. In doing so, copresent carers reassured patients and helped them conduct the activities that make up a consultation. However, carers did not necessarily help patients solve all the challenges of a video consultation (eg, aiming the camera while laying hands on the patient during an examination). We compared cases where an informal carer was copresent with cases where the patient was alone, which showed that carers provided an important safety net, particularly for patients who were frail and experienced mobility difficulties. Informal carers play a critical role in making video consultations safe and feasible, particularly for patients with limited technological experience or complex needs. Guidance and research on video consulting need to consider the availability and work done by informal carers and how they can be supported in providing patients access to digital health care services.

Expert consensus-based clinical recommendation for an integrative anthroposophic treatment approach to acute tonsillitis in childhood

BackgroundMedical guidelines are an important basis for qualitative and cost-effective patient care. However, there is a lack of clinical recommendations in anthroposophic medicine (AM), an integrative medicine approach frequently practised in Europe. Acute tonsillitis, which includes tonsillopharyngitis, is a common childhood disease. that is mostly caused by a viral infection. Symptomatic treatment is therefore of high importance, and AM can offer several therapy options. Methods53 physicians from Germany, Spain, Netherlands, Switzerland, Austria, and Hungary with at least one year of experience in anthroposophic paediatric medicine were invited to participate in an online Delphi process. The process comprises five survey rounds starting with open-ended questions and ending with final statements, which need 75% agreement of experts to reach consensus. Expert answers were evaluated by two independent reviewers using MAXQDA and Excel. ResultsResponse rate was between 28% and 45%. The developed recommendation included 15 subtopics. These covered clinical, diagnostic, therapeutic and psychosocial aspects of acute tonsillitis. Six subtopics achieved a high consensus (>90%) and nine subtopics achieved consensus (75–90%). ConclusionThe clinical recommendation for acute tonsillitis in children aims to simplify everyday patient care and provide decision-making support when considering and prescribing anthroposophic therapies. Moreover, the recommendation makes AM more transparent for physicians, parents, and maybe political stakeholders as well.

Towards a Regulatory Framework for Workflow Improvement in Electronic Medical Records.

Physicians have to complete several time-consuming and burnout-inducing tasks in their EMRs for everyday care of patients. Poor workflow design generates increased effort for physicians. In this study, we measure time doctors take to retrieve and review information in the patient chart at the beginning of a visit; one of approximately 12 tasks a doctor must do in the EMR during the visit. Information retrieval takes approximately 40 minutes per day. Automation could save 75% of that time. We estimate that if every family doctor in Canada could save 30 minutes through automation of just this one process, we could free up time equivalent to >3000 physicians and >5 million patients; enough to absorb the vast majority of patients who currently do not have a doctor. We know of no more powerful intervention than workflow automation in Canadian EMRs to increase the supply of doctors while simultaneously reducing a major cause of burnout. We recommend an accelerated research program to identify additional opportunities for workflow automation and a regulatory program to ensure that every physician has access to workflow automation in their EMR.

Risk Stratification in Pulmonary Arterial Hypertension, Update and Perspectives

Risk stratification in pulmonary arterial hypertension (PAH) is crucial in assessing patient prognosis. It serves a prominent role in everyday patient care and can be determined using several validated risk assessment scores worldwide. The recently published 2022 European Society of Cardiology (ESC)/European Respiratory Society (ERS) guidelines underline the importance of risk stratification not only at baseline but also during follow-up. Achieving a low-risk status has now become the therapeutic goal, emphasising the importance of personalised therapy. The application of these guidelines is also important in determining the timing for lung transplantation referral. In this review, we summarise the most relevant prognostic factors of PAH as well as the parameters used in PAH risk scores and their evolution in the guidelines over the last decade. Finally, we describe the central role that risk stratification plays in the current guidelines not only in European countries but also in Asian countries.

ID: 221102 An Interim Report on Real-World Outcomes for Parkinson's Disease and Disabling Tremor Subjects in ADROIT

Deep brain stimulation (DBS) is an effective therapy for motor symptoms of Parkinson’s disease (PD) and disabling tremor (DT). Such successful therapeutic outcomes have been well-established through motor improvements in multicenter, randomized controlled clinical trials. However, real-world outcomes have become of particular interest to the DBS community to inform optimization of everyday patient care. ADROIT (Abbott DBS Post-Market Study of Outcomes for Indications over Time) is a post-market study conducted to gather clinical data on how DBS systems are being used in routine clinical practice.

Recommendations for individual comorbidity risk assessment in adult patients with psoriasis

It has long been known that chronic inflammatory systemic diseases, such as psoriasis, pose ahigh risk of developing comorbidities. In everyday clinical practice, it is therefore of particular importance to identify patients who have an individually increased risk profile. In patients with psoriasis, the comorbidity patterns "metabolic syndrome", "cardiovascular comorbidity" and "mental illness" were identified as particularly relevant in epidemiological studies depending on the duration and severity of the disease. In the everyday care of patients with psoriasis in dermatological practice, the use of an interdisciplinary checklist for risk analysis and the initiation of professional follow-up care has proven valuable. On the basis of an existing checklist, the contents were critically evaluated by an interdisciplinary group of experts and aguideline-oriented update was prepared. In the opinion of the authors, the new analysis sheet represents apracticable, factually focused and updated tool for comorbidity risk assessment in patients with moderate and severe psoriasis.

Tactical Considerations for Designing Real-World Studies: Fit-for-Purpose Designs That Bridge Research and Practice.

Real-world evidence (RWE) is being used to provide information on diverse groups of patients who may be highly impacted by disease but are not typically studied in traditional randomized clinical trials (RCT) and to obtain insights from everyday care settings and real-world adherence to inform clinical practice. RWE is derived from so-called real-world data (RWD), ie, information generated by clinicians in the course of everyday patient care, and is sometimes coupled with systematic input from patients in the form of patient-reported outcomes or from wearable biosensors. Studies using RWD are conducted to evaluate how well medical interventions, services, and diagnostics perform under conditions of real-world use, and may include long-term follow-up. Here, we describe the main types of studies used to generate RWE and offer pointers for clinicians interested in study design and execution. Our tactical guidance addresses (1) opportunistic study designs, (2) considerations about representativeness of study participants, (3) expectations for transparency about data provenance, handling and quality assessments, and (4) considerations for strengthening studies using record linkage and/or randomization in pragmatic clinical trials. We also discuss likely sources of bias and suggest mitigation strategies. We see a future where clinical records - patient-generated data and other RWD - are brought together and harnessed by robust study design with efficient data capture and strong data curation. Traditional RCT will remain the mainstay of drug development, but RWE will play a growing role in clinical, regulatory, and payer decision-making. The most meaningful RWE will come from collaboration with astute clinicians with deep practice experience and questioning minds working closely with patients and researchers experienced in the development of RWE.

Missed diagnosis or misdiagnosis: Common pitfalls in genetic testing.

Genetic testing has the power to identify individuals with increased predisposition to disease, allowing individuals the opportunity to make informed management, treatment and reproductive decisions. As genomic medicine continues to be integrated into aspects of everyday patient care and the indications for genetic testing continue to expand, genetic services are increasingly being offered by non-genetic clinicians. The current complexities of genetic testing highlight the need to support and ensure non-genetic professionals are adequately equipped with the knowledge and skills to provide services. We describe a series of misdiagnosed/mismanaged cases, highlighting the common pitfalls in genetic testing to identify the knowledge gaps and where education and support is needed. We highlight that education focusing on differential diagnoses, test selection and result interpretation is needed. Collaboration and communication between genetic and non-genetic clinicians and integration of genetic counsellors into different medical settings are important. This will minimise the risks and maximise the benefits of genetic testing, ensuring adverse outcomes are mitigated.

CYP2C19 loss-of-function alleles and the use of omeprazole or esomeprazole increase the risk of cardiovascular outcomes in patients using clopidogrel – a real-world study

Abstract Background Patients carrying loss-of-function (LOF) variants of CYP2C19 or using the CYP2C19-inhibitors omeprazole or esomeprazole cannot fully bioactivate clopidogrel, and thus are lacking optimal thrombosis prevention. However, clopidogrel is a relevant alternative to ticagrelor due to its lower incidence of hemorrhagic events and lower cost. Purpose The purpose of this study was to investigate in a real-life prospective patient cohort how loss-of-function (LOF) CYP2C19 variants and omeprazole or esomeprazole influence the incidence of cardiovascular events (cardiovascular deaths, reinfarction and strokes) in patients using clopidogrel. Methods A cohort of prospective patients (N=1972) with acute coronary syndrome (ACS) (N=1302) or symptomatic chronic coronary disease (N=670) were followed for 365 days. Information of purchased prescription drugs, hospital discharge, and death registry was available for all patients. The patients were retrospectively genotyped for the CYP2C19*2, CYP2C19*3, and CYP2C19*8 LOF variants. Results A total of 608 (30.8%) patients carried CYP2C19 LOF alleles. During the 365 days follow-up, 252 patients had a recurring ischemic vascular event, either myocardial infarction (N=189), stroke (N=24) or cardiovascular death (N=39). Vascular events were significantly more frequent among carriers of CYP2C19 LOF alleles [14.8% (95% CI 11.7–17.8] than in non-carriers [10.8% (95% CI 9.0–12.6)], p=0.016. Omeprazole or esomeprazole use was similar among the LOF allele carriers and non-carriers, but inclusion of their use in the analysis strengthened the association. Vascular events were significantly more common in a composite group of carriers of CYP2C19 LOF alleles and non-carriers who were using omeprazole or esomeprazole than in non-carriers who were not using omeprazole or esomeprazole 14.8% (95% CI 12.2–17.3) vs 9.9% (95% CI 8.0–11.9) p=0.002. There was a tendency towards lower risk of hemorrhagic complications in carriers of LOF alleles than in non-carriers (p=0.07). Conclusions Patients with impaired clopidogrel bioactivation due to loss-of-function CYP2C19 variants or concomitant omeprazole or esomeprazole use are at increased risk of cardiovascular events. For relevant patient care both genetics and concomitant medication should be considered both in everyday patient care and further randomised studies. Funding Acknowledgement Type of funding sources: None.

Cross-sectoral patient care in the district of Hamburg Harburg: an example of urological cooperation

Ensuring future urological care at the interface between out- and inpatient care is challenging due to demographic developments with an increasing proportion of urological diseases, the simultaneous threat of ashortage of physicians, and the increasing outpatient treatment of complex urological diseases. The cross-sectoral cooperation model between auniversity maximum care provider and the urologic joint practice with ahospital affiliation (BAG) presented below can serve as an ideal model for outpatient-inpatient care. Since 2016, there has been close cooperation between the BAG in Winsen/Buchholz and the University Medical Center Hamburg-Eppendorf (UKE). In addition to direct patient transfer and the continuous pre- and posttreatment of patients, two residents from the UKE rotate to the BAG every year. The BAG benefits from this cooperation through planning security and support in everyday patient care, while the UKE benefits from patient transfer as well as surgical and "basic urological" training of residents. By avoiding duplicate examinations and earlier discharge of patients into outpatient follow-up care, resources are spared. Meaningful patient preselection enables minor interventions to be performed close to home via the BAG, whereas complex cases are carried out at acenter of excellence. The cooperation is seen positively by all parties without exception and, above all, as abenefit for the patient's wellbeing. The optimal training and further education of young urologists in this expanding field can thus be supported and should be integrated into urological resident training.

Transdisciplinary research in energetics and cancer (TREC) training program for early career investigators.

11031 Background: Given the rising prevalence of obesity, poor diet and physical inactivity, known in combination as “energy balance” or “energetics”, as well as their associations with cancer incidence and mortality, innovative research, clinical care and training of scientists are needed to lower the prevalence of these risk factors and in turn, lower cancer incidence and mortality rates. Methods: With NCI support (R25CA203650) from 2016-2021, we developed and offered an annual one-week, in-residence Transdisciplinary Research in Energetics and Cancer (TREC) Training workshop, followed by a yearlong mentoring program, that focused on energy balance and cancer research across the cancer control continuum. Results: We recruited, educated, trained and mentored 123 early career investigators (TREC Fellows) from 64 different institutions and from diverse academic backgrounds (i.e., 20% basic, 33% clinical and 47% population sciences) in transdisciplinary research in energetics and cancer. Fellows accepted to the TREC Training Program worked with more than 20 expert international TREC Faculty on developing grant applications and original research toward key gaps in energy balance and cancer research. TREC Fellows have published over 270 manuscripts in peer-reviewed journals, with at least 62 published manuscripts including the TREC Fellow as first or senior author and including a TREC Faculty and/or Fellow as co-author. Since completing the Program, TREC Fellows have received at least 31 extramural grants, as principal investigator. Building upon the strengths of the previous five years, we were awarded a competitive renewal to continue the TREC Training Program through 2026. TREC Training program goals are: (1) to continue to offer a TREC Training Program for ̃100 academically diverse early career investigators including a 5-day in-residence workshop focused on the Fellows research, networking, mentoring and professional development; (2) to evaluate the TREC Training Program and track TREC Fellows career development; and (3) to disseminate the TREC Training sessions, webinars and newsletter to the broader community of investigators. Conclusions: To our knowledge, no other in-residence training program exists that focuses on energetics and cancer research. Our vision is to continue the TREC mission of training scientists and clinicians to develop a cadre of well-trained, diverse researchers. The overall impact of this transdisciplinary training course will be defined by the degree to which TREC Fellows produce innovative research approaches and discoveries, thereby accelerating the dissemination and implementation of evidence-based approaches into everyday practice and patient care and improving the health of the population at risk for cancer as well as cancer survivors.

Glucocorticoid Withdrawal-An Overview on When and How to Diagnose Adrenal Insufficiency in Clinical Practice.

Glucocorticoids (GCs) are widely used due to their anti-inflammatory and immunosuppressive effects. As many as 1–3% of the population are currently on GC treatment. Prolonged therapy with GCs is associated with an increased risk of GC-induced adrenal insufficiency (AI). AI is a rare and often underdiagnosed clinical condition characterized by deficient GC production by the adrenal cortex. AI can be life-threatening; therefore, it is essential to know how to diagnose and treat this disorder. Not only oral but also inhalation, topical, nasal, intra-articular and intravenous administration of GCs may lead to adrenal suppression. Moreover, recent studies have proven that short-term (<4 weeks), as well as low-dose (<5 mg prednisone equivalent per day) GC treatment can also suppress the hypothalamic–pituitary–adrenal axis. Chronic therapy with GCs is the most common cause of AI. GC-induced AI remains challenging for clinicians in everyday patient care. Properly conducted GC withdrawal is crucial in preventing GC-induced AI; however, adrenal suppression may occur despite following recommended GC tapering regimens. A suspicion of GC-induced AI requires careful diagnostic workup and prompt introduction of a GC replacement treatment. The present review provides a summary of current knowledge on the management of GC-induced AI, including diagnostic methods, treatment schedules, and GC withdrawal regimens in adults.

Working Toward Consensus on Sporadic Vestibular Schwannoma Care: A Modified Delphi Study

To address variance in clinical care surrounding sporadic vestibular schwannoma, a modified Delphi study was performed to establish a general framework to approach vestibular schwannoma care. A multidisciplinary panel of experts was established with deliberate representation from key stakeholder societies. External validity of the final statements was assessed through an online survey of registered attendees of the 8th Quadrennial International Conference on Vestibular Schwannoma. Modified Delphi method. The panel consisted of 16 vestibular schwannoma experts (8 neurotology and 8 neurosurgery) and included delegates representing the AAOHNSF, AANS/CNS tumor section, ISRS, and NASBS. The modified Delphi method encompassed a four-step process, comprised of one prevoting round to establish a list of focus areas and three subsequent voting rounds to successively refine individual statements and establish levels of consensus. Thresholds for achieving moderate consensus, at ≥67% agreement, and strong consensus, at ≥80% agreement, were determined a priori. All voting was performed anonymously via the Qualtrics online survey tool and full participation from all panel members was required before procession to the next voting round. Through the Delphi process, 103 items were developed encompassing hearing preservation (N = 49), tumor control and imaging surveillance (N = 20), preferred treatment (N = 24), operative considerations (N = 4), and complications (N = 6). As a result of item refinement, moderate (4%) or strong (96%) consensus was achieved in all 103 final statements. Seventy-nine conference registrants participated in the online survey to assess external validity. Among these survey respondents, moderate (N = 21, 20%) or strong (N = 73, 71%) consensus was achieved in 94 of 103 (91%) statements, and no consensus was reached in 9 (9%). Of the four items with moderate consensus by the expert panel, one had moderate consensus by the conference participants and three had no consensus. This modified Delphi study on sporadic vestibular schwannoma codifies 100% consensus within a multidisciplinary expert panel and is further supported by 91% consensus among an external group of clinicians who regularly provide care for patients with vestibular schwannoma. These final 103 statements address clinically pragmatic items that have direct application to everyday patient care. This document is not intended to define standard of care or drive insurance reimbursement, but rather to provide a general framework to approach vestibular schwannoma care for providers and patients.

Telemedicine in cardiac procedures: considerations for a remote future.

Present a review of relevant literature and suggest a framework for discussion of the considerations affecting the evolution and adoption of Telerobotic Support and Telerobotic Collaboration in the practice of cardiac procedural medicine. Recent medical practice has undergone remarkable transformation in the adoption of telemedicine. This evolution has been accelerated by the COVID-19 (SARS-CoV-2) pandemic and has largely been focused on outpatient medicine. Clinical studies and opinion articles have highlighted benefits including reduced costs, increased patient engagement, and saved time, while also raising concerns regarding privacy, care quality and data security. Early and current efforts implementing remote procedural medicine have not only demonstrated technical success but also highlighted the many issues that must be resolved before acceptance as a major aspect of everyday patient care. It is inevitable that remote technologies will play an increasing role in procedural medicine as they have in outpatient clinical medicine. Thoughtful participation by physicians in the evolution of these technologies and their modes of use will be necessary to maximize the benefits to our patients and healthcare systems.

Twelve tips for facilitating and implementing clinical debriefing programmes

Contemporary clinical practice places a high demand on healthcare workforces due to complexity and rapid evolution of guidelines. We need embedded workplace practices such as clinical debriefing (CD) to support everyday learning and patient care. Debriefing, defined as a ‘guided reflective learning conversation’, is most often undertaken in small groups following simulation-based experiences. However, emerging evidence suggests that debriefing may also enhance learning in clinical environments where facilitators need to simultaneously balance psychological safety, learning goals and emotional well-being. This twelve tips article summarises international experience collated at the recent Association for Medical Education in Europe (AMEE) debriefing symposium. These tips encompass the benefits of CD, as well as suggested approach to facilitation. Successful CD programmes are frequently team focussed, interdisciplinary, implemented in stages and use a clear structure.

Salt sensitivity and hypertension.

Salt sensitivity refers to the physiological trait present in mammals, including humans, by which the blood pressure (BP) of some members of the population exhibits changes parallel to changes in salt intake. It is commoner in elderly, females, Afro-Americans, patients with chronic kidney disease (CKD) and insulin resistance. Increased salt intake promotes an expansion of extracellular fluid volume and increases cardiac output. Salt-sensitive individuals present an abnormal kidney reaction to salt intake; the kidneys retain most of the salt due to an abnormal over-reactivity of sympathetic nervous system and a blunted suppression of renin-angiotensin axis. Moreover, instead of peripheral vascular resistance falling, salt-sensitive subjects present increased vascular resistance due mainly to impaired nitric oxide synthesis in endothelium. Recent studies have shown that part of the dietary salt loading accumulates in skin. Hypertensive and patients with CKD seem to have more sodium in skin comparing to healthy ones. However, we still have not fully explained the link between skin sodium, BP and salt sensitivity. Finally, although salt sensitivity plays a meaningful role in BP pathophysiology, it cannot be used by the physician in everyday patient's care, mainly due to lack of a simple and practical diagnostic test.

Palliative Care in SMA Type 1: A Prospective Multicenter French Study Based on Parents' Reports

Spinal muscular atrophy type 1 (SMA-1) is a severe neurodegenerative disorder, which in the absence of curative treatment, leads to death before 1 year of age in most cases. Caring for these short-lived and severely impaired infants requires palliative management. New drugs (nusinersen) have recently been developed that may modify SMA-1 natural history and thus raise ethical concerns about the appropriate level of care for patients. The national Hospital Clinical Research Program (PHRC) called “Assessment of clinical practices of palliative care in children with Spinal Muscular Atrophy Type 1 (SMA-1)” was a multicenter prospective study conducted in France between 2012 and 2016 to report palliative practices in SMA-1 in real life through prospective caregivers' reports about their infants' management. Thirty-nine patients were included in the prospective PHRC (17 centers). We also studied retrospective data regarding management of 43 other SMA-1 patients (18 centers) over the same period, including seven treated with nusinersen, in comparison with historical data from 222 patients previously published over two periods of 10 years (1989–2009). In the latest period studied, median age at diagnosis was 3 months [0.6–10.4]. Seventy-seven patients died at a median 6 months of age[1–27]: 32% at home and 8% in an intensive care unit. Eighty-five percent of patients received enteral nutrition, some through a gastrostomy (6%). Sixteen percent had a non-invasive ventilation (NIV). Seventy-seven percent received sedative treatment at the time of death. Over time, palliative management occurred more frequently at home with increased levels of technical supportive care (enteral nutrition, oxygenotherapy, and analgesic and sedative treatments). No statistical difference was found between the prospective and retrospective patients for the last period. However, significant differences were found between patients treated with nusinersen vs. those untreated. Our data confirm that palliative care is essential in management of SMA-1 patients and that parents are extensively involved in everyday patient care. Our data suggest that nusinersen treatment was accompanied by significantly more invasive supportive care, indicating that a re-examination of standard clinical practices should explicitly consider what treatment pathways are in infants' and caregivers' best interest. This study was registered on clinicaltrials.gov under the reference NCT01862042 (https://clinicaltrials.gov/ct2/show/study/NCT01862042?cond=SMA1&rank=8).

Views of ophthalmologists on the genetics of age-related macular degeneration: Results of a qualitative study.

BackgroundAge-related macular degeneration (AMD) is the leading cause of blindness in industrialized countries. It is a multifactorial disease of the retina modified by environmental/individual (e.g. smoking) and genetic factors. 34 independent genomic loci are associated with the risk to develop AMD; an interaction between smoking and genetics is currently investigated. It is unclear how the knowledge on the strong genetic component has entered the knowledge base of practicing ophthalmologists, and how they inform and counsel their (AMD) patients about it. In this study, we explore the ophthalmologists’ view on AMD genetics, and their inclination towards communicating genetic risks to patients.MethodsWe recruited a purposive sample of thirty German ophthalmologists (office based: n = 15, hospital employees: n = 15, f:8/30), who took part in a recorded semi-standardized interview. Transcripts were analyzed using content analysis.ResultsThe majority of office-based ophthalmologists claimed to be unfamiliar with genetics of AMD, in contrast to hospital-affiliated ophthalmologists. Both office and hospital ophthalmologists were convinced that genetics lacks practical relevance in everyday patient care. Many withhold information on heritability or genetic background of AMD from patients and their relatives, for fear of unsettling those individuals. The relevance of the genetic component of AMD or an individuals’ high genetic risk for prevention, e.g. screening or lifestyle modifications in persons with adverse genetic profile, was rated low.ConclusionDeveloping genetic educational programs tailored to the routine care of ophthalmologists may be indicated, as well as a better two-way communication between research and practice. Exploring patient views about their expectations to being informed about genetic disease etiology, or about their individual risk, would help inform communication strategies.

Prevencija bolničkih infekcija u formalnom i neformalnom obrazovanju medicinskih sestara

INTRODUCTION: The actuality and the significance of hospital-acquired infections (HAI) obliges nurses to know well and to consistently implement prevention measures HAI in everyday patient care activities. Nurses gain their elementary knowledge about hospital-acquired infections and preventive measures through teaching materials in secondary medical schools, which they significantly expand during their education in basic and specialist vocational studies. After being employed, through constant training ,nurses are enabled to follow news in the field of (HAI) prevention. GOAL: To perceive the representation of content about prevention of HAI in the process of formal and informal education of nurses. Material and methods: The research was conducted by using the cross-sectional study type, by interviewing 50 employed nurses at the internal department in the Community Hospital in Zrenjanin. The instrument of research was a questionnaire for nurses, designed for research purposes. RESULTS: The largest percentage of nurses (94%) have a secondary level of education. 2/3 nurses are interested in continuing their education. More than 1/2 of the nurses think that, beside sufficiently acquired knowledge about HI during schooling, training in this field is an indispensable segment of nurse practice. The desire for additional education was expressed by 70% of the respondents, while the others claimed , that they would attend education only if it was obligatory (24%) ,and 6% wouldn't even then do it, because they do not expect new knowledge. CONCLUSION: During the formal education of nurses, not enough knowledge about HAI and prevention measures is acquired, so there is need to increase the amount of hours in secondary schools ,dedicated to the contents of prevention of HAI ,as well as the need for obligatory continuous training of nurses in practice.

Item response models for the longitudinal analysis of health-related quality of life in cancer clinical trials

BackgroundThe use of health-related quality of life (HRQoL) as an endpoint in cancer clinical trials is growing rapidly. Hence, research into the statistical approaches used to analyze HRQoL data is of major importance, and could lead to a better understanding of the impact of treatments on the everyday life and care of patients. Amongst the models that are used for the longitudinal analysis of HRQoL, we focused on the mixed models from item response theory, to directly analyze raw data from questionnaires.MethodsWe reviewed the different item response models for ordinal responses, using a recent classification of generalized linear models for categorical data. Based on methodological and practical arguments, we then proposed a conceptual selection of these models for the longitudinal analysis of HRQoL in cancer clinical trials.ResultsTo complete comparison studies already present in the literature, we performed a simulation study based on random part of the mixed models, so to compare the linear mixed model classically used to the selected item response models. As expected, the sensitivity of the item response models to detect random effects with lower variance is better than that of the linear mixed model. We then used a cumulative item response model to perform a longitudinal analysis of HRQoL data from a cancer clinical trial.ConclusionsAdjacent and cumulative item response models seem particularly suitable for HRQoL analysis. In the specific context of cancer clinical trials and the comparison between two groups of HRQoL data over time, the cumulative model seems to be the most suitable, given that it is able to generate a more complete set of results and gives an intuitive illustration of the data.