Deputy Director, Albert Einstein College of Medicine
For example information typically considered sensitive includes that related to infectious and sexually transmitted diseases symptoms magnesium deficiency buy lamotrigine 200mg with visa, alcohol medications memory loss order lamotrigine 50mg amex, and drug and mental health history and obstetric and gynaecological history (particularly in relation to induced abortion) medications given to newborns 50mg lamotrigine sale. However some patients may consider, for example a family or personal history of carcinoma as, or more, sensitive while one clinician suggested he would be more worried about an insurance company (via their GP) checking his lipids. We also need to consider the time and resource implications of information flow “informed consent” processes and how realistic it is at the time of information collection to make decisions on all information collected in terms of its current and future information flows; for example, that information item A can go to Doctor A but not Doctor B or Nurse C, but item C can only be viewed by Doctor D. In the common situation of resource limitation and prioritisation it can be argued there may be a pragmatic need for “implied consent”, with the patient having to actively indicate they want a particularly piece of information limited in its flow. Similarly it can be argued that it is misleading to even attempt to utilise the concept of informed consent to imply that a health service can truly offer a patient the option of control over their information flows. There may be clinical, statutory, regulatory or financial requirements that require a clinician or health service to pass certain information or partial information to other bodies. A clinician or health service can do their best to make a patient aware of the nature and purpose of the information they are collecting and how it may be utilised, but it is misleading to imply that the patient has total, un-coerced control over that information, for which they can freely offer or withdraw consent. Copying or distributing in print or electronic forms without written permission of Idea Group Inc. The Challenge of Privacy and Security 81 Accordingly a patient may be advised that if they do not agree to their information being stored or shared in a particular way, the clinician or health service may not be in a position to offer them a service. Challenges to Privacy and Security Processes Healthcare, and indeed human physiology and disease progression are increasingly recognised for their complexity and non-linear dynamics, where there are limitations for reductionistic views and solutions that do not or can not recognise or adapt to that complexity (Plsek & Greenhalgh, 2001; Goldberger, 1996). This section will not attempt an exploration of the theory or to utilise the formal language of non-linear dynamics, but again, through the use of metaphor and perspectives, aims to convey some of that complexity, particularly as it relates to privacy and security and the implementation of electronic health knowledge management systems. Knowledge Neurones and the Therapeutic Knowledge Alliance From a distance and at a fixed point in time clinical information may appear to be exchanged in a simple linear chain like fashion. For example, organisation or person A communicates with organisation or person B who communicates with organisation or person C, and all may be expected to exchange the same information in a standardised format. Therefore conceptually, one might hope to control the flow of information by mapping these connections and asking a patient who trusted connections they consent or agree to have in their own particular chain and under what conditions information should flow along it. However in reality there are often a series of intermingling web-like connections, both within and between multiple organisations and their constituent individuals that are continually being realigned, reshaped and restructured over time. Additionally, as opposed to information being passed in a single standardised format, there are often different variants or segments of the information passed between each connection. Knowledge Neurones In addition to electronic health information systems storing text-based records clinicians utilise a multitude of other channels to transfer and manage health information. These include paper records, phones, personal digital assistants, pagers, voicemail, fax, e-mail, and not least conversation or personal and group interaction. Copying or distributing in print or electronic forms without written permission of Idea Group Inc. Electronic health knowledge management systems may assist the clinician in the continuous process of integrating these multiple channels and adding or discerning intelligence. The clinician may strengthen or utilise more channels perceived to add value and ignore or weaken channels perceived to add less value. Historically the “therapeutic alliance” concept has had an evolving meaning, but carries the sense of clinician and patient working together (Goldstein, 1999). Similarly, the earlier definition of a health knowledge management system attempted to convey the sense of GPs, allied health services, and patients and their supports all working together. We could consider each of these groups as forming their own knowledge neurones and conceptualise a “therapeutic knowledge alliance” comprising of a web of these inter- weaving knowledge neurones, all supporting each other and working together to make a healthy difference.
Because there is indi- Signs and symptoms vidual variation in the progression of the disease treatment xerosis buy 100mg lamotrigine otc, some Patients with Alzheimer disease progress at different patients may still be able to continue routine behavior rates symptoms depression cheap lamotrigine online master card. Progression of memory loss will vary from person and engage in a generalized type of conversation during to person medicine 2016 order lamotrigine now. Changes in vision are fre- that they are experiencing failure in memory, a condition quently denied and only confirmed by autopsy results referred to as agnosognosia. Other patients are keenly after death that indicate destruction in the areas of the aware of their memory loss and may become anxious and brain, which process visual images. The patient can patients experience stiffening of muscles that causes their become easily confused and lost. Rationalizing with patients ence problems with comprehension and remembering the becomes very difficult at this time because they experi- names of things in their environment. They are often unable to rea- not flow smoothly when they talk and they may experi- son or demonstrate appropriate judgment. Patients may ence difficulties repeating previously explained informa- become uninhibited and confrontational. Simple mathematical calculations or performing rience delusions, which are false beliefs despite ample tasks such as dressing or preparing a meal at the correct evidence to the contrary. This can be manifested in ways GALE ENCYCLOPEDIA OF GENETIC DISORDERS 67 Alzheimer Disease Autosomal Dominant d. As of 2000, studies indicate that MRI is perceive objects in their environment that do not actually statistically accurate in predicting who may or may not exist. Many are unable to are changes in specific proteins and nerve structures of talk and have lost total control of their bowel and urinary the brain that occur normally as an individual ages but are functions. Abnormal jerking movements of the body may greatly increased in patients with Alzheimer disease. Touching a patient or certain noises These brain changes are similar in sporadic, familial may precipitate these abnormal body movements. When early onset, familial late onset, and patients with Down reflexes such as the knee (tapping of the leg below the syndrome related Alzheimer disease. It is also noted that knee) are tested, there are frequently exaggerated the longer the disease process for an individual lasts, the responses. Treatment and management Diagnosis Because the course of Alzheimer disease has great Diagnosis is established based upon exclusion of individual variation, treatment is aimed at being support- other possible causes for dementia. Acetylcholine and norepinephrine are The earliest changes in the structure of the brain are chemicals important in many processes in the body seen using PET scans. MRI and CT scans are most use- including digestion, blood vessel dilation and constric- ful in the early phase of the disease to exclude other brain tion (usually refers to blood vessel diameter becoming abnormalities that may be causing dementia. Acetylcholinester- ease progresses, use of MRI and CT scans will show ase is an enzyme in the body that breaks down acetyl- 68 GALE ENCYCLOPEDIA OF GENETIC DISORDERS choline. One class of drugs is currently available in the down the brain changes in older mice. Antidepressants such as selective sero- steroidal anti-inflammatory drugs (drugs that reduce tonin reuptake inhibitors are the most commonly used inflammation in the body), estrogen, and vitamin E in the class of drugs for treatment of depression. In April of 2001 the first use of human gene therapy Seizures, anxiety, agitation, defiant behavior, inability to for the treatment of Alzheimer disease was undertaken. Patient and caregiver should establish a relation- brains called nerve growth factor.
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Clinical evidence evaluating the influence of diet in neurological disease includes the following examples symptoms gallbladder order lamotrigine. Epilepsy: the ketogenic diet The ketogenic diet is a high-fat treatment for gout order lamotrigine master card, low-carbohydrate diet that was developed decades ago but which has recently come under consideration in intractable cases treatment 7th march bournemouth lamotrigine 25 mg amex. There have been many studies reporting a sig- nificant decrease in seizures of children with severe epilepsy that were 10–12 treated with the ketogenic diet. Although the diet is highly successful in decreasing seizures in difficult-to-treat epileptic children, compliance with the diet is often an 13 issue. There is evidence that it may increase the frequency of kidney stone formation in 14 those on the diet. Migraine headaches: hypoallergenic diets (elimination/challenge diet) The rationale for use of this type of diet for migraine headaches is that food allergies cause platelet degranulation and histamine release that can precipitate vasomotor 15 instability and subsequent migraine. There are a number of studies that have reported a benefit in subjects who suffer from migraines and have eliminated foods that might elicit 16–20 a migraine. The elimination diet requires that a person go on various versions of an oligoallergenic restricted diet (a typical diet may be primarily lamb and rice for a period of 7–10 days) after which they systematically re-introduce food groups to identify foods that will elicit a migraine. Once a food that triggers a migraine is identified, the food is taken out of the diet for a period of time and is re-introduced in smaller quantities. The strategy is not to stay on a highly restricted diet but to identify allergenic foods and to decrease the amounts and frequency of these foods consumed. Naturopathic medicine in neurological disorders 159 Multiple sclerosis: the Swank diet There have been a number of epidemiological studies assessing associations between dietary factors and the risk of developing multiple sclerosis (MS). A number of epidemiological studies have reported a significant positive association between risk of 21,22 MS and consumption of animal fat. Dr Roy Swank has provided evidence that a diet low in saturated fats (less than 15 g/day) combined with cod liver oil supplementation, maintained over a long period of time, tends to retard the disease process, reduce the 23,24 number of attacks and decrease mortality. Oneopen-label pilot clinical trial evaluated the effects of a diet low in saturated fats supplemented with fish oil, vitamin B-complex 25 and vitamin C in subjects with newly diagnosed relapsing-remitting MS. After 2 years of this regimen the study reported a significant decrease from baseline values of relapse rates and disability scores. Preliminary reports from a recent randomized placebo- controlled pilot study evaluating a diet very low in saturated fat (less than 15%) supplemented with fish oil capsules found that, when compared with subjects following the American Heart Diet (less than 30% saturated fat) supplemented with placebo oil capsules, the treatment group had a significant decrease in relapse rate, disability and a 26 decrease in two inflammatory cytokines. These studies suggest that a diet very low in fat combined with fish oil supplementation may help to decrease relapse rates and increase time to disability in people with MS. Nutritional/dietary supplementation Many naturopaths use a variety of nutritional supplements usually as an adjunct to fundamental lifestyle therapies, such as diet, exercise and stress reduction (counseling) to address a specific symptom or condition. Under the DSHEA, dietary supplements are considered foods and not drugs and therefore regulated by the FDA as foods. Examples of substances that are considered dietary supplements include: fish, flax, evening primrose and borage oils, glandulars (usually made from animal sources), enzymes, melatonin and dehydroepiandrosterone (DHEA) (although these are hormones they are regulated and sold as dietary supplements in the USA), garlic capsules, soluble fiber, coenzyme Q10 (CoQ-10), L-carnitine, 5-hydroxytryptophan (5-HTP), etc. Obviously this is just a small fraction of the number and types of existing dietary supplements; the associated effects indicated below are rarely definitive. Cold-water fish and fish oil contain a high proportion of the omega-3 fatty acids and therefore contain a higher relative proportion of DHA and eicosapentaenoic acid. There have been at least two clinical trials evaluating the effectiveness of essential fatty acids (EFA) and DHA supplementation for dementia.
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