Potential for development of haemophilia link nurse role within UK hospitals

Link nurses are practising nurses with an expressed interest in a given specialty, with formal links to clinical nurse specialists and other specialist staff. The role involves attending meetings to discuss ideas and new developments, and relaying findings to other ward nurses to improve their practice. Such nurses are common in many specialties such as diabetes and tissue viability. In haemophilia, the role has the potential to enhance the care of haemophilia patients on general hospital wards. In April 2012, a focus group of five haemophilia nurses was convened to discuss their experiences of ‘link nurse’ programmes within district general hospitals and the potential value of developing the haemophilia link nurse role, and to consider the materials needed to support such role development. It was agreed to test whether other haemophilia nurses perceived such a need by means of a short five‐item questionnaire devised by the group and made available to all members of the UK's Haemophilia Nurse's Association via Survey‐Monkey. Final responses from 59 haemophilia nurses across the UK have been analysed. Most nurses agreed that there was value in the development of a haemophilia link nurse role within UK hospitals and thought their trusts would support it. While barriers and potential downsides were acknowledged, this was seen as a useful way of sharing information and knowledge with colleagues from different specialties and of raising awareness of bleeding disorders among the general nursing community. Haemophilia nurses should coordinate the development of a Haemophilia Link Nurse training and education pack.     

Treatment trends for haemophilia A and haemophilia B in the United States: results from the 2010 practice patterns survey

Frequent evaluation of haemophilia treatment is necessary to improve patient care. The 2010 Practice Patterns Survey (PPS) investigated current trends in haemophilia treatment in the United States, as reported by nurses. The aim was to document practice patterns for haemophilia A and haemophilia B Survey questionnaires were sent to nurses at haemophilia treatment centres (HTCs) across the United States. Seventy-one of 126 HTCs (56%) responded to the survey. Factor dosage across treatment modalities ranged from 20 to 50 IU kg(-1) for severe haemophilia A. Dosage for severe haemophilia B was more variable (<40 to >100 IU kg(-1)). On-demand dosing regimens were inconsistent for haemophilia A and more so for haemophilia B. Rates of adherence to prescribed treatment were similar for both haemophilia types (～80%). The main barrier to adherence was identified as inconvenience. More bleeding episodes occurred in adults (16.6 bleeding episodes per year) with severe haemophilia A than in younger patients (11.3 bleeding episodes per year) before switching patients to prophylaxis. For both haemophilia types, most patients who switched from prophylaxis to on-demand treatment were aged 13-24 years; these patients also had the lowest adherence (60-71%). More paediatric patients with severe haemophilia A and inhibitors (53%) received prophylactic bypassing therapy than their haemophilia B counterparts (38%). Adults with severe haemophilia A faced challenges in relation to co-morbidities and long-term care. This PPS provides insights into previously unexplored aspects of haemophilia care that will serve to increase awareness and promote discussion of current issues affecting haemophilia patient care.     

Towards comprehensive care in transition for young people with haemophilia

Summary. In the last two decades, the transition from paediatric to adult care has received increasing attention. Health care professionals have become more aware of the unique needs of adolescents and young adults with chronic illnesses and efforts have been made to support youth through this challenging time of change. For patients with haemophilia and their families, there is little evidence regarding best practice for transition of care. We reviewed the transition literature and current guidelines for transition for patients with haemophilia. We advocate that comprehensive haemophilia care includes a conscientious approach to transition of care that should start in early adolescence and be developmentally sensitive. In considering the needs of patients and parents, we must engage both paediatric and adult health care providers to make the transfer smooth and ensure the best care possible during this time.     

Treatment patterns, health-related quality of life and adherence to prophylaxis among haemophilia A patients in the United States

Summary. Prophylaxis and adherence to prophylaxis are increasingly recognized as important factors for the health‐related quality of life (HRQOL) of haemophilia patients. This study aims to assess treatment practices over time, HRQOL and adherence among severe haemophilia A patients in the US. Severe haemophilia A patients or their caregivers participated in a 2009 cross‐sectional survey. HRQOL was measured using either PEDS‐QL or SF‐12; adherence was measured using the VERITAS‐Pro. Student t‐tests evaluated differences between children vs. adults and self‐infusion status. A total of 117 respondents participated in the survey, capturing data for 64 adults (mean age = 37.9 years) and 53 children (mean age = 10.5 years). Although 96% of paediatric patients were currently receiving prophylaxis, only 32 (50%) adults reported receiving prophylaxis at some point in their life. Adults who have always been on prophylaxis reported better physical functioning and physical HRQOL (both P < 0.05) than adults who had not. The paediatric group reported better adherence compared to the adult group on the total scale (38 vs. 45.8, P < 0.05). Children <12 years had higher adherence than adolescents 12–18 years old (35.5 vs. 40.8; P < 0.05). Paediatric patients infused by family members showed better adherence than paediatric self‐infusers (P < 0.05). This study showed different treatment patterns between paediatric and adult patients and how the patterns impacted HRQOL. It also provided the first standardized evaluation of adherence using the VERITAS‐Pro in a US national sample. This study enhances understanding of treatment practices and adherence for the US haemophilia population and may offer insight into where adherence can be improved.     

Neue Reanimationsleitlinie bei Erwachsenen

In October 2015, new guidelines for cardiopulmonary resuscitation (CPR) were published, which represent a revision of the guidelines 2010. The new recommendations are based on an update of knowledge on resuscitation, which was evaluated for the first time by GRADE (Grading of Recommendations Assessment, Development and Evaluation). The key messages of the guidelines 2010 were retained in 2015. Adult basic life support consists of a sequence of 30 chest compressions at a rate of 100–120/min with a depth of 5 to maximally 6 cm and 2 ventilations. As soon as possible, an automated external defibrillator (AED) should be applied. Interruptions of chest compressions should be minimized. To improve bystander CPR emergency medical dispatchers should diagnose cardiac arrest when informed about unconscious persons not breathing normally. In this case, emergency medical staff should inform bystanders to resuscitate with compression only CPR until the arrival of an emergency team. In postresuscitation care, mild hypothermia (body temperature 32–34?°C) has been replaced by targeted temperature management in unconscious patients. Now, the guidelines recommend a constant body temperature between 32–36?°C for at least 24 h. Fever should be prevented or treated.     

Current practices regarding newborn intracranial haemorrhage and obstetrical care and mode of delivery of pregnant haemophilia carriers: a survey of obstetricians, neonatologists and haematologists in the United States, on behalf of the National Hemophilia Foundation''s Medical and Scientific Advisory Council

We undertook this survey to determine institutional practices of obstetricians, neonatologists and haematologists regarding care of pregnant haemophilia carriers and newborns with haemophilia and intracranial haemorrhage (ICH). Our purpose was also to determine whether institutions had written guidelines to manage such patients. Questionnaires were sent to 1000 obstetricians and through the Haemophilia Treatment Centres (HTC) to 180 paediatric haematologists and 180 neonatologists, each representing an institution. Twenty-three per cent of obstetricians, 22% of neonatologists and 16% of paediatric haematologists returned completed surveys. Over 94% of the respondents had no written guidelines for management of pregnant haemophilia carriers or their newborns or for neurologic assessment of newborns. For known haemophilia carriers, 57% of the obstetricians routinely preferred vaginal delivery and 11% preferred caesarean section. Availability of perinatal services influenced prenatal management (P < 0.05). In term newborns with documented ICH, only 23% of neonatologists would evaluate for haemophilia, whereas in pre-term newborns with ICH, this number dropped even further to 3%. For all newborns with haemophilia, 40% preferred routine administration of clotting factor concentrates (CFC) immediately following birth to offset the trauma of delivery and 89% of paediatric haematologists favoured early prophylaxis with CFC. Guidelines are needed for management of pregnant haemophilia carriers as well as newborns with haemophilia. Physicians need to be made aware that ICH may be a presenting sign of haemophilia in both term as well as pre-term newborns, so that appropriate therapy can be instituted early in the event of a bleed.     

Why don't haemophilia nurses do research?

Clinical research should form a core component of the role of haemophilia nurse specialists. The UK Haemophilia Nurses Association sought to determine the barriers that prevent nurse specialists from engaging in research and to seek ways to promote clinical research by haemophilia nurses in the UK. Web-based survey with subsequent workshop discussion was conducted. Responses were received from 32 nurses (a 50% response rate), all of whom agreed that haemophilia nurses should be actively involved in nursing research although only 21 had actually participated in research specifically related to haemophilia practice. Of these, most research had been related to educational programmes or (less commonly) was limited to data collection as part of multidisciplinary studies. Involvement in research rarely resulted in publication. Some barriers to involvement in nursing research and subsequent publication were suggested by survey respondents. They also identified key practice areas that warranted nurse-based research including carriership and antenatal decision-making, along with the role and impact on care of the specialist haemophilia nurse, education and empowerment. To overcome the barriers to engaging in research and publishing, nurses require dedicated research time, mentorship and collaboration with more experienced haemophilia nurse researchers.     

Adherence to prophylaxis is associated with better outcomes in moderate and severe haemophilia: results of a patient survey

Severe haemophilia is associated with bleeding into joints and development of arthropathy. Prophylactic treatment with infusion of replacement clotting factor is known to prevent bleeding, preserve joint functioning and result in higher health‐related quality of life (HRQoL) than episodic treatment; however, adhering to standard prophylaxis schedules can be difficult, and little is known about the relationship between adherence to prophylactic treatment and outcomes. The aim of this study was to assess the relationship between self‐reported adherence to prophylaxis and health outcomes, including HRQoL and bleeding episodes. Adults with haemophilia (n = 55) and caregivers of children with haemophilia (n = 55) in Australia, Canada, and the United States completed an online questionnaire which included measures of HRQoL (SF‐12v2 for adults and SF‐10 for caregivers of children), self‐reported bleeding episodes, and the VERITAS‐Pro measure of adherence to prophylaxis in haemophilia. Regression analysis was used to test the association between VERITAS‐Pro total score and outcomes. Poorer adherence (higher VERITAS‐Pro scores) was associated with a greater number of self‐reported bleeding episodes in the past year among adults (p < 0.01), more days of work/school missed among paediatric patients (p < 0.01), and lower physical health status scores among paediatric patients (p < 0.05). This study highlights the benefits of adherence to prophylaxis among those with severe haemophilia and provides evidence for the utility of the VERITAS‐Pro by demonstrating a relationship between adherence and outcomes.     

系统化整体护理在急诊科的应用分析

目的探讨系统化整体护理在急诊科的应用效果。方法根据我院急诊科实际工作特点及运作方式,秉承以患者为中心的理念,对急诊科实施系统化整体护理。结果与管理前相比,管理后护士工作的积极性和责任感明显增强,理论知识和护理技能得到了扩展,护理人员的整体素质有了明显的提高,同时增进了患者的信任和满意度,缓和了医患关系,减少了医疗纠纷,提高了护理质量。讨论建立符合急诊科实际的系统化整体护理,适应了护理模式的发展,有利于实现高效、优质的护理工作。     

上海市各级医护人员对《中国糖尿病防治指南》知晓现状的抽查及分析

了解医护人员对<中国糖尿病防治指南>相关知识的掌握情况,为进一步推广和更好开展糖尿病相关防治工作打下基础.根据<中国糖尿病防治指南>相关知识点设计问卷,对上海市175名内分泌专业及社区医护人员进行调查,分析比较被调查者基本情况、专业培训和对糖尿病防治知识要点的掌握情况.接受<指南>培训的医护人员占16.6%(社区、三级和二级医院医护人员分别为46.67%、14.75%和7.14%,P＜0.01).临床医生参加糖尿病专业培训的比例均高于护理人员(P＜0.01).<指南>相关知识的总体正确知晓率37.36%,社区医院医护人员低于三级和二级医院(P＜0.05),被调查医生的总体正确知晓率高于护士(P＜0.05),不同医疗机构的医护人员对糖尿病关键知识点的掌握情况存在相当大的差异,当前糖尿病专业培训方法的有效性值得探讨.我国糖尿病防治工作有待加强,尤其应统一各级医院医护人员对糖尿病防治重要环节的认识、加强<中国糖尿病防治指南>的推广、有效开展糖尿病专业培训、建立医院和社区糖尿病防治的专业化合作.

Abstract：

To analyze and evaluate the knowledge of Chinese Guidelines of Diabetes Prevention and Treatment in Shanghai medical staff. 175 medical staff working in endocrinology or community health were enrolled and evaluated by a questionnaire of guidelines about the state of professional, training, and related knowledge. Only 16. 6% medical staffwere trained about the guidelines( 46. 67% from the general hospitals, 14. 75% from secod-level hospital and 7. 14% persons from the community hospitals, P＜0. 01 ). The total correct answer rate of the guidelines was 37. 36%. The correct rate of community hospitals was lower than others( P＜0. 05 ). The rate of doctors' was higher than nurses'( P＜0. 05 ). There were difference between doctors and nurses with the key point of diabetes care knowledge in different level hospitals. The effective method of clinical training in diabetes care should be explored. We still have to work hard to promote the effect of diabetes control and prevention. Effective training about the guidelines should be enhanced. The cooperation between general hospitals and community health institutions in diabetes prevention and treatment should be enhanced.     

Twenty-four-hour access to emergency care for children in managed care

Children's medical emergencies occur around the clock. In years past, the emergency department, open 24 hours a day, was a familiar site for treating these emergencies. However, in today's health care environment, the scenario can be more confusing. As many families move from a fee-for-service system into a managed care organization (MCO), they may be unclear about what they should do in an emergency involving their child. MCOs want to provide appropriate care, and at the same time, operate within a system designed to contain costs through the establishment of effective health care delivery systems. Providers of emergency services, including specialists in pediatric medicine and emergency medical services responders, also must contend with a different set of problems, including administrative entanglements and concerns about reimbursement for their services. This article continues the white paper series by the Emergency Medical Services for Children Managed Care Task Force.     

Does Health Information Exchange Reduce Unnecessary Neuroimaging and Improve Quality of Headache Care in the Emergency Department?

Background

Health information exchange (HIE) is advocated as an approach to reduce unnecessary testing and improve quality of emergency department (ED) care, but little evidence supports its use. Headache is a specific condition for which HIE has theoretical benefits.

Objective

To determine whether health information exchange (HIE) reduces potentially unnecessary neuroimaging, increases adherence with evidence-based guidelines, and decreases costs in the emergency department (ED) evaluation of headache.

Design

Longitudinal data analysis

Subjects

All repeat patient-visits (N = 2,102) by all 1,252 adults presenting with headache to a Memphis metropolitan area ED two or more times between August 1, 2007 and July 31, 2009.

Intervention

Use of a regional HIE connecting the 15 major adult hospitals and two regional clinic systems by authorized ED personnel to access the patient’s record during the time period in which the patient was being seen in the ED.

Main Measures

Diagnostic neuroimaging (CT, CT angiography, MRI or MRI angiography), evidence-based guideline adherence, and total patient-visit estimated cost.

Key Results

HIE data were accessed for 21.8 % of ED patient-visits for headache. 69.8 % received neuroimaging. HIE was associated with decreased odds of diagnostic neuroimaging (odds ratio [OR] 0.38, confidence interval [CI] 0.29–0.50) and increased adherence with evidence-based guidelines (OR 1.33, CI 1.02–1.73). Administrative/nursing staff HIE use (OR 0.24, CI 0.17–0.34) was also associated with decreased neuroimaging after adjustment for confounding factors. Overall HIE use was not associated with significant changes in costs.

Conclusions

HIE is associated with decreased diagnostic imaging and increased evidence-based guideline adherence in the emergency evaluation of headache, but was not associated with improvements in overall costs. Controlled trials are needed to test whether specific HIE enhancements to increase HIE use can further reduce potentially unnecessary diagnostic imaging and improve adherence with guidelines while decreasing costs of care.KEY WORDS: health information exchange, medical informatics, headache, headache disorders, migraine disorders, delivery of health care, emergency medicine, quality of health care, health services research     

Fight or flight: the ethics of emergency physician disaster response

Most disaster plans depend on using emergency physicians, nurses, emergency department support staff, and out-of-hospital personnel to maintain the health care system's front line during crises that involve personal risk to themselves or their families. Planners automatically assume that emergency health care workers will respond. However, we need to ask: Should they, and will they, work rather than flee? The answer involves basic moral and personal issues. This article identifies and examines the factors that influence health care workers' decisions in these situations. After reviewing physicians' response to past disasters and epidemics, we evaluate how much danger they actually faced. Next, we examine guidelines from medical professional organizations about physicians' duty to provide care despite personal risks, although we acknowledge that individuals will interpret and apply professional expectations and norms according to their own situation and values. The article goes on to articulate moral arguments for a duty to treat during disasters and social crises, as well as moral reasons that may limit or override such a duty. How fear influences behavior is examined, as are the institutional and social measures that can be taken to control fear and to encourage health professionals to provide treatment in crisis situations. Finally, the article emphasizes the importance of effective risk communication in enabling health care professionals and the public to make informed and defensible decisions during disasters. We conclude that the decision to stay or leave will ultimately depend on individuals' risk assessment and their value systems. Preparations for the next pandemic or disaster should include policies that encourage emergency physicians, who are inevitably among those at highest risk, to "stay and fight."     

Development and validation of a measure of disease-specific quality of life in young children with haemophilia

No disease-specific tool for measuring health-related quality of life (HRQL), an important outcome when assessing medical treatment, has been developed for children with haemophilia. The goal of this study was to develop a parent-administered questionnaire for evaluating quality of life (QOL) in paediatric haemophilia patients between 2 and 6 years of age. After interviewing physicians (5), nurses (5) and parents (10) of children with haemophilia aged between 2 and 6 years, 92 questions were developed and pilot-tested with parents (44) of children with haemophilia to create a 39-question instrument that assessed somatic symptoms, physical functioning, sleep disturbance, stigma, social functioning, fear/resentment, mood/behaviour, restrictions, treatment upset, haemophilia concern and energy level. Reliability and validity were evaluated with 103 parents of children with haemophilia and parents of 249 age- and gender-matched healthy children. Estimates of scale reliability (internal consistency) for eight multi-item scales ranged from 0.73 to 0.94. Results showed construct validity (correlations with age, severity of haemophilia, treatment type, days absent and days confined to bed) and correlated with two general, paediatric quality-of-life instruments (Impact on Family Scale and Functional Status II). Discriminant validity was demonstrated by comparing scores between patients receiving/not receiving prophylactic therapy and between haemophilia patients and healthy controls. This disease-specific HRQL measure should be of use in clinical trials and general practice to better understand disease and treatment impacts in young children with haemophilia.     

‘Just an unfortunate coincidence’: children’s understanding of haemophilia genetics and inheritance

Summary. This paper presents the results of a study talking to children and young people affected with severe haemophilia A and/or haemophilia B about their knowledge and understanding of genetics and inheritance. These data were gathered in a qualitative study using semi‐structured interviews with thirty boys aged four to sixteen discussing the impact of haemophilia on their lives. Responses were tape recorded, transcribed and analysed, using thematic analysis; one of the themes identified was genetic knowledge which is presented in this paper. Genetic knowledge was formed within the context of normal day‐to‐day lives within families affected by haemophilia, with parents and haemophilia centre staff being sources of information about individual inheritance patterns as well as providers of information about the future genetic impact of having haemophilia.     

The awareness of postexposure prophylaxis for HIV infection following sexual exposure in emergency departments in a regional HIV network

The introduction of UK clinical guidelines in 2006 set clear standards for the provision of postexposure prophylaxis for HIV following sexual exposure (PEPSE) to patients who present to health-care settings. However, some patients have reported wide inequities in provision of PEPSE. We used a questionnaire to evaluate staff awareness and provision of PEPSE in various clinical situations in three major emergency departments (EDs) in the Wessex region of the UK. Thirty-three doctors and 50 nurses completed the questionnaire. There was a general lack of awareness regarding local protocols, availability of postexposure prophylaxis (PEP) packs and whom to contact for advice. Knowledge about PEP provision varied according to clinical scenario but was better among senior medical staff. The deficits in awareness and knowledge of PEPSE among ED staff highlighted in this study raises concerns about patients' access to this intervention. We plan to implement local training to address these issues and raise awareness of the local genitourinary medicine/HIV services as a source of advice.     

Understanding adherence to hand hygiene recommendations: The theory of planned behavior

BACKGROUND: Most health care workers (HCWs) are aware of the rationale for hand hygiene procedures, yet failure to adhere to guidelines is common. Little is known about factors that motivate HCWs to practice hand hygiene. PURPOSE: The purposes of this study were to (1) estimate adherence to hand hygiene recommendations; (2) describe relationships among motivational factors, adherence, and intensity of nursing unit activity; and (3) test an explanatory model for adherence to hand hygiene guidelines based on the theory of planned behavior (TPB). METHOD: A longitudinal, observational design was used to collect data from 120 registered nurses employed in critical care and postcritical care units. Nurses provided information about motivational factors and intentions and a self-report of the proportion of time they followed guidelines. At least 2 weeks later, the nurses' hand hygiene performance was observed while they provided patient care. Structural equation modeling was used to test the TPB-based model. RESULTS: Rate of adherence to recommendations for 1248 hand hygiene indications was 70%. The correlation between self-reported and observed adherence to handwashing recommendations was low (r = 0.21). TPB variables predicted intention to handwash, and intention was related to self-reported hand hygiene. Intensity of activity in the nursing unit, rather than TPB variables, predicted observed adherence to hand hygiene recommendations. CONCLUSIONS: The limited association between self-reported and observed hand hygiene scores remains an enigma to be explained. Actual hand hygiene behavior may be more sensitive to the intensity of work activity in the clinical setting than to internal motivational factors.     

The use of nasogastric feeding tubes in nursing homes: patient, family and health care provider perspectives

This anthropological study investigated attitudes of patients, family members, nurses, and physicians toward the use of nasogastric tube feedings in 3 nursing homes. In-depth interviews and participant observation were used to obtain data. Fifty-three percent of the patients, 58% of families, and 70% of the nursing staff approved of the use of tube feedings. Diverse opinions characterized physicians' responses. Findings disclosed inadequate communication among health care providers, patients, and families, and that some families perceive the tubes as being inserted for the convenience of nursing home staff.