国外血友病家庭治疗和护理管理现状

归纳了近年来国外家庭治疗和护理管理的主要进展,即国外家庭护理观点的演变、患者管理,分析了患者评估、资料管理、患者对血友病知识及对家庭治疗、护理和自我管理的需求.在此基础上,对我国血友病家庭治疗和护理的前景进行了展望.     

广州地区29例血友病患儿家庭治疗及护理现状调查

目的了解广州地区血友病患儿家庭治疗与护理现状,提高家庭治疗与护理水平。方法对广州市血友病治疗中心登记在册的29例广州地区血友病患儿及其父母进行问卷调查,主要内容为患儿一般情况、2006年家庭治疗与护理现状及FISH评分（Functional Independence Score in Hemophilia）。结果只有少数血友病患儿开展凝血因子家庭注射,凝血因子使用量明显不足,治疗效果与血友病患儿家庭护理状况不佳、血友病患儿未能获取有效社会支持有关。结论血友病专业医护人员在指导家庭治疗和护理服务方面只发挥了有限的作用,对血友病患者的健康教育和护理与国际水平相比存在很大差距,缺乏有经验的血友病专业护士．缺少必要的医疗资源,未能建立起紧密的医患合作关系。     

慢性病患者自我倡权研究进展

慢性病成为威胁居民健康的重大问题。自我倡权水平高的慢性病患者能够通过收集各种医疗信息,不断获取外部支持,从而主动选择更加适合自己的照护和治疗方式,以满足自身需求和愿望,更好地管理自身疾病。国外对慢性病患者自我倡权研究已经取得部分进展,而国内对此尚处于起步阶段。因此,该文对慢性病患者自我倡权的测评工具、影响因素、干预措施进行综述,以期为慢性病患者自我倡权的发展提供依据。     

Impact of tele-advice on community nurses' knowledge of venous leg ulcer care

Aim.  This paper reports a study assessing the impact of the provision of expert tele-advice to community nurses in enhancing their knowledge of leg ulcer care.
Background.  Community nurses have traditionally been responsible for the care of patients with leg ulcers. However, access to expert medical and nursing advice has been restricted to the local hospital environment. The introduction of e-health and telemedicine have created opportunities to provide online and immediate access to wound care expertise from centres of excellence to primary health care staff in managing patients' wounds in their own home.
Method.  A stratified randomized controlled trial was used to examine community nurses' knowledge before and after the provision of expert tele-advice. A knowledge measurement tool comprised of 40 multiple-choice questions was adopted, with correct responses identified by a panel of wound care experts. The questions covered the three themes of dressings, management and physiology, with different levels of difficulty categorized as easy, medium or difficult. The tool was administered before and after the intervention (12 weeks) to both the experimental and control groups.
Results.  Statistically significant improvements were observed only for the experimental group in the areas of dressings and management, as well as in the medium level questions. No statistically significant improvement was seen for the easy questions, as there was little room for improvement because of preintervention high scores. For the difficult questions, it was thought that more time would be needed for a more positive outcome.
Conclusions.  The results suggest that tele-advice can be of great benefit to community nurses in enhancing their knowledge in the practice of leg ulcer care. This will have significant implications for more efficient use of human resources and cost effectiveness in wound care.     

A型血友病患儿家庭治疗护理状况回顾性调查分析

目的调查中国A型血友病4～18岁患儿家庭治疗和护理状况。方法 2006年、2010年两次对血友病家庭治疗和护理状况进行调查。结果 A型血友病患儿诊断年龄和治疗年龄晚于首次出血年龄;凝血因子用量不足;血友病性骨关节病患病率高;开展了家庭治疗的血友病患儿从55例上升到119例,血友病患儿及家庭对发病原因、遗传规律、出血严重程度的评估和正确服用止痛药物认知率分别从80.8%、78.5%、37.4%和48.4%上升到94.7%、94.1%、52.7%和85.5%;在开展家庭康复训练、保持治疗记录完整两方面没有明显改善。结论 A型血友病患儿诊断治疗延迟,凝血因子用量不足,骨关节病发病率高,家庭护理水平仍然有待于进一步提高。     

Family physicians increase provision of well-infant care despite decline in prenatal services

Over the past 20 years, family physicians and general practitioners (FP/GPs) and pediatricians have upheld their commitment to preventive care for infants. Non-Metropolitan Statistical Areas (non-MSAs) depend on family physicians for almost one half of their well-infant care. FP/GPs have increased their overall provision of well-infant care despite a decline in delivery of prenatal services. This commitment to child health care demands continued excellence of family physician training in pediatric medicine, preventive care, and child advocacy.     

Creating excellence in patient care

Occupational therapists are working in health care organizations that operate from an efficiency perspective. There is growing criticism that this approach can put quality patient care at risk. This article proposes the excellence perspective as a way to address quality as well as productivity. The excellence perspective is one that occupational therapists can use as a guide to program innovation. It is a perspective that fits with the occupational therapist's concern for quality patient care and the administration's concern for productivity. This article examines the excellence perspective and describes its use in business and its potential for health care. A case study that exemplifies excellence in patient care is presented.     

Assessing referral appropriateness in the Intake Department: system changes under PPS

Since PPS, the Intake Department focus includes evaluation of the level of home care services needed and payment coverage criteria. This article focuses on questions intake staff should ask to adequately screen for home care eligibility. Even though the OASIS assessment cannot be completed prior to the start of care visit, screening information can be collected that relate to the OASIS questions.     

应用myPKFiT解析药代动力学指导血友病A患者个体化用药的进展

myPKFiT是药代动力学(pharmacokinetic,PK)指导下的A型血友病管理工具,能够快速准确地输出患者PK参数和给药方案供临床参考.目前血友病A的标准治疗手段为预防治疗,然而由于个体间差异的影响,仅以体重为参考来计算凝血因子Ⅷ(FⅧ)的用量,并不能满足血友病A患者的个体化治疗需求.PK参数可以协助临床医生...     

Preparation of pooled cryoprecipitate for treatment of hemophilia A in a home care program

Cryoprecipitate is used infrequently in home therapy for patients with hemophilia A since freezer storage is required and resuspension and pooling of thawed cryoprecipitate is cumbersome. We evaluated procedures for preparation of cryoprecipitate in an "open system" so that four to six bags of cryoprecipitate could be pooled after production and refrozen for home therapy. Factor VIII activity for pooled cryoprecipitate was 132 +/- 30 (mean +/- SD), 125 +/- 45, and 145 +/- 47 units per bag pooled in three separate studies. Cultures from cryoprecipitate pools and individual cryoprecipitate bags did not show contamination in the "open system" or with the water bath thawing procedure. The mean increment in factor VIII activity per unit per kg infused was 0.02 units per ml and the mean half-life was 10.5 hours in three patients with hemophilia A. Pooled cryoprecipitate was shown to be clinically efficacious and acceptable for use in home care programs for hemophilia A.     

Effects of a training program for home health care workers on the provision of preventive activities and on the health-related behavior of their clients: A quasi-experimental study

BackgroundBecause home health care workers repeatedly visit the same older adults, they are in an excellent position to improve the health-related behavior of older adults, their clients, by providing preventive activities.ObjectivesThe objective of this study was to determine the short- and medium term effects of an intervention to support workers in providing preventive activities for older adults. To do this, the number of activities undertaken by workers and the health-related behavior of their clients were assessed.DesignA quasi-experimental study was performed with a pre-post design and inclusion of one control group.SettingsThe study took place in a deprived, semi-rural area in The Netherlands (2011–2013). Data in three districts served by one home health care organization were gathered.ParticipantsThe participants were home health care workers (registered nurses and nurse aides) and home health care clients aged 55 and over (community-dwelling, dependent older adults receiving home health care). 205 home health care workers participated in the study, 97 of them in the first effect measurement; and 83 of them in the second effect measurement. A total of 304 home health care clients participated, 214 of them in the first effect measurement; and 186 of them in the second effect measurement.MethodsDifferences in change were determined in health-related behavior between groups of older adults as a result of training home health care workers in preventive activitiesResultsIn the control group of home health care professionals a significant increase was found regarding the provision of preventive activities for the domain ‘weight’ (partial eta squared: 0.05 and 0.08 at first and second effect measurements, respectively). We found preventive activities performed by home health care professionals to have no significant effects on older adult-reported health-related behavior, but observed in the intervention group a non-significant trend in improvement of physical activity of, respectively, 85 and 207 min for the first and second effect-measurements.ConclusionThis training program had hardly any effect on preventive activities performed by home health care workers and on the health-related behavior of older adults. Offering health promotion via home health care workers may be promising but its delivery should be enhanced.     

Managing patients with bipolar disorder at home: a family affair and a psychiatric challenge in home healthcare

Medicare has covered psychiatric home care for many years, but the delivery of psychiatric services in the home continues to raise questions related to coverage and criteria. What services do psychiatric nurses provide in the home? What are the rules and regulations governing this service? This article presents information related to psychiatric nursing in home care and specifically bipolar disease. These questions are answered within Chapter 7 of the Medicare Benefit Policy Manual, April 2011. Section 40.1.2.15.     

Medical complications of hemophilia

The modern, comprehensive care of patients with hemophilia requires an awareness that complications other than those caused by acute hemorrhage can occur. The use of newer, more potent plasma concentrates has been accompanied by an increased incidence of liver disease in transfusion-requiring hemophiliacs. The progression to chronic active hepatitis and cirrhosis are particularly ominous developments in these patients. There is also a high incidence of urinary tract abnormalities in hemophiliacs, though the long-term consequences of these abnormalities are unknown. Furthermore, it must be remembered that urinary tract disorders unrelated to hemorrhage, such as nephrolithiasis, tumors, and nephritis, can occur in patients with hemophilia and may be mistaken for hemorrhage. Finally, hypertension occurs more frequently in patients with hemophilia than in the general population and may in part contribute to the occurrence of bleeding within the central nervous system. Methods for evaluating and treating these various disorders are discussed. Greater awareness of these potentially treatable medical complications will improve further the quality of care in hemophilia.     

Some lousy questions for home health nurses

Pediculosis continues to be a widespread problem for both the public and health care professionals, including home health nurses. Dealing with this problem is complicated by a number of factors, including questions concerning the efficacy and safety of the medications used and the level of knowledge of about this condition. Because pediculosis often is considered more as an embarrassing annoyance than a serious threat, it has a relatively low priority on the list of contemporary health care concerns. This article addresses several practical questions concerning the character and treatment of pediculosis that are of special concern to home health nurses.     

我国及欧美血友病综合关怀模式的现状

欧美国家血友病患者接受血友病治疗中心提供的综合关怀,在医疗资源利用效率及对生存率方面的作用优于其他模式,并发症发生率及死亡率降低,人均寿命及生活质量提高。目前我国没有形成全国血友病综合关怀网络系统,多数血友病中心还没有组成多学科团队和提供综合关怀,而且缺少适合中国国情的血友病治疗、护理与康复指南和健康教育材料。     

Current and future nursing issues in the home administration of chemotherapy

Although chemotherapy in the home is now a reality and is seen as positive, there remain many questions that have not been completely answered. Such questions include: Who should be caring for these patients? Which criteria should be used to select the best home care agency? What is the best way to prepare, transport, and administer the chemotherapeutic agents? Which agents are acceptable for home administration? How will the legal and reimbursement issues be resolved? Is home chemotherapy truly safe and beneficial for the patient?Home chemotherapy programs have developed over the past several years and most probably will continue to grow. As oncology nurses we need to identify our very important role in such programs by establishing guidelines and recommendations to ensure that only high quality programs exist.The role of the Oncology Clinical Nurse Specialist in the home care setting will continue to be defined. Home care nurses caring for the oncology client should be certified in this specialty and supported by a Clinical Nurse Specialist in order to significantly affect the quality of living for persons with cancer and their families.²⁶Since the nursing profession has the responsibility for the quality of oncology care in the home, so should it assume the authority. Through standards of practice and education based on quality nursing research, we can assure that nursing maintains that responsibility and authority for home oncology and chemotherapy care. No other profession is more qualified.     

Assuring successful home enteral feedings

As increased numbers of acutely and chronically ill patients are cared for in the home environment, the need for high-tech services such as enteral feedings will increase. This article has outlined some areas to be considered in order to assure a successful tube-feeding experience for patient, family, and caregivers. As new information becomes available from home health research, clinical practices will need to be revised and refined to incorporate this new data. It is evident that current practices in the area of enteral feeding as well as other high-tech areas are somewhat arbitrary and that many critical questions about policies and procedures remain unanswered. It is to be hoped that clinicians and administrators of home health agencies will continue to collaborate with nursing faculty to engage in and promote research and study of these areas and share their findings with others. Only in this way can all home care patients be assured of the highest quality care.