Diagnosis and management of adult hereditary cardio-neuromuscular disorders: A model for the multidisciplinary care of complex genetic disorders.

Genetic disorders that disrupt the structure and function of the cardiovascular system and the peripheral nervous system are common enough to be encountered in routine cardiovascular practice. Although often these patients are diagnosed in childhood and come to the cardiologist fully characterized, some patients with hereditary neuromuscular disease may not manifest until adulthood and will present initially to the adult cardiologist for an evaluation of an abnormal ECG, unexplained syncope, LV hypertrophy, and or a dilated cardiomyopathy of unknown cause. Cardiologists are often ill-equipped to manage these patients due to lack of training and exposure as well as the complete absence of practice guidelines to aid in the diagnosis and management of these disorders.

Parental perspectives on negotiation of their child's care in hospital.

Aim: To increase understanding of parents' perspectives on the negotiation of care.

Method: A translated and validated questionnaire was completed by 444 parents of children admitted over a 16-month period to one hospital in Portugal.

Results: The overwhelming majority of participating parents believed that parents should always stay with their child in hospital and provide basic care, including being woken in the night to do so.

Effective communication: Principle of Nursing Practice E.

This is the sixth article in a nine-part series describing the Principles of Nursing Practice developed by the Royal College of Nursing (RCN) in collaboration with patient and service user organisations, the Department of Health, the Nursing and Midwifery Council, nurses and other healthcare professionals. The article discusses Principle E, effective communication, and provides some examples of good practice.

A prospective study of hepatitis B vaccination - a comparison of responders versus nonresponders.

Herein we present one of the largest single-center reports of the response of hemodialysis patients to a two-vaccine hepatitis B virus vaccination protocol in a European dialysis population. A hepatitis B recombinant DNA vaccine, HBvaxPRO, was given at a dose of 40 µg intramuscularly using a four-dose schedule at 0, 1, 2, and 12 months. Responses were (1) a titer >100 mIU/mL = patient immune, (2) a titer level 10-99 mIU/mL = give a booster dose and recheck level 2 months later, and (3) 0 ≤ 10 mIU/mL = repeat vaccination course using a different vaccine, Engerix-B.

In excellent e-health.

THE WHITE paper for NHS England, Equity and Excellence: Liberating the NHS, states that patients should have more information and data on all aspects of health care to enable them to share in care decisions.

Educating a health terminologist.

An overview of competencies and suggestions for educating healthcare terminologists is presented. This new role in healthcare informatics requires formal and informal education that pays particular attention to the adult learner. Knowledge of terminology and informatics standards development is critical, as well as knowledge about the use of terminology management servers.

e-Health in Scotland: setting a baseline for stakeholder alignment.

Gaining knowledge of nurses' attitudes towards and understanding of various aspects of the Scottish e-Health programme is vital for needed 'stakeholder alignment'. This paper is focused on the Scottish results from a large on-line survey carried out in 2006, across the UK. Key findings, identified through analysis of both qualitative and quantitative data, are discussed.

Collaborative decision-making for extreme premature delivery.

A multidisciplinary workshop with parent/consumer involvement was held to determine a consensus in the difficult arena of perinatal care of women and babies at the borderlines of viability. Interactive forums produced consensus statements following an extensive consultation process. A grey zone between 23(0) and 25(6) weeks of gestation was identified and agreed upon.

Mutual enhancement of diverse terminologies.

The purpose of this study was to map the North American Nursing Diagnosis Association (NANDA) nursing diagnoses to the International Classification for Nursing Practice Version 1.0 (ICNP) and to compare the resulting representations and relationships to those within SNOMED Clinical Terms (CT). Independent reviewers reached agreement on 25 (i.

Practical definition of SNOMED CT concepts: The case of education, advice and counselling.

Rigour is needed in the construction of health terminologies to avoid introducing ambiguity and error into clinical records. When two large scale terminologies (SNOMED RT and Clinical terms Version 3) were merged to form SNOMED CT) a number duplicate and ambiguous concepts were introduced. The SNOMED nursing working group was tasked with producing a draft editorial policy to resolve duplications and ambiguities in terms related to education, advice and counselling.

A Tartan Warning: Results from the Royal College of Nursing (Scotland) on-line surveys.

Rapid advancements in Information and communication technologies are set to revolutionise the National Health Service across UK and billions of pounds are spent on modernising the service. The technology enabled service in Scotland will have a considerable impact on the working lives of care providers. Nursing professionals, being the largest single professional group in the care service, are likely to be the most affected by it.

Health information literacy and competencies of information age students: results from the interactive online Research Readiness Self-Assessment (RRSA).

Background: In an era of easy access to information, university students who will soon enter health professions need to develop their information competencies. The Research Readiness Self-Assessment (RRSA) is based on the Information Literacy Competency Standards for Higher Education, and it measures proficiency in obtaining health information, evaluating the quality of health information, and understanding plagiarism.

Objective: This study aimed to measure the proficiency of college-age health information consumers in finding and evaluating electronic health information; to assess their ability to discriminate between peer-reviewed scholarly resources and opinion pieces or sales pitches; and to examine the extent to which they are aware of their level of health information competency.