scholarly journals Prenatal counseling: Guidelines for the care of people with spina bifida

2020 ◽  
Vol 13 (4) ◽  
pp. 461-466
Author(s):  
Paige Terrien Church ◽  
Heidi Castillo ◽  
Jonathan Castillo ◽  
Anne Berndl ◽  
Timothy Brei ◽  
...  
Keyword(s):  
Spina Bifida ◽  
Medical Care ◽  
Treatment Options ◽  
Fourth Edition ◽  
Prenatal Counseling

As the diagnosis of Spina Bifida (SB) is often made prenatally, SB-specific prenatal counseling is needed. It is essential to provide information about medical care and lifelong impact of this diagnosis, treatment options available to women carrying fetuses affected, and resources that will assist in the care of individuals with SB. This article outlines the SB Prenatal Counseling Guidelines from the 2018 Spina Bifida Association’s Fourth Edition of the Guidelines for the Care of People with Spina Bifida and acknowledges that further research in SB prenatal counseling is warranted.

scholarly journals Xenograft Bone-Derived Collagen Scaffold for Myelomeningocele Management

2019 ◽  
Vol 2 (1) ◽  
Author(s):  
Sadid Khan ◽  
Natalie Campbell ◽  
Sam Fathizadeh ◽  
Sean Bucherl ◽  
Eric Nauman, Ph.D.
Keyword(s):  
Spina Bifida ◽  
Mechanical Strength ◽  
Treatment Options ◽  
Fetal Surgery ◽  
Collagen Scaffold ◽  
Lower Limbs ◽  
Neurological Injury ◽  
Maternal Complications ◽  
Bioactive Proteins ◽  
The Us

Background and Hypothesis: Spina bifida is a neural tube defect resulting from an incomplete closure of the caudal neuropore. The most debilitating form of spina bifida, myelomeningocele (MMC), can present with Chiari II malformation with concomitant hydrocephalus, bowel and bladder abnormalities, and impaired motor function of the lower limbs. The incidence rate of spina bifida is 3.4 per 10,000 live births reported within the US. On average, the US spends $1,176,000,000 annually on patient management and treatment. Advancements in existing treatment options, namely fetal surgery, can greatly decrease neurological injury and related costs, but at the risk of fetal and maternal complications. Various tissue engineering methods have been proposed including biodegradable and synthetic scaffolds, seeded with or without bioactive proteins and stem cells, sutured or glued to the defect, and administered fetoscopically or through open fetal surgery. However, no combination of these methods is fully biointegratable, watertight, provides complete coverage with adequate mechanical strength, and is able to be administered fetoscopically. Experimental Design: This study utilizes bovine and porcine bone to create an organic, flexible collagen scaffold that can be seeded with bioactive proteins and attached with adhesive for successful coverage of MMC defects. Conclusion and Potential Impact: The natural matrix may allow for quicker host cell integration and greater mechanical strength compared to existing models. This study will characterize the mechanical strength, permeability, and biointegration of the proposed management of spina bifida.

scholarly journals Short stature and the effect of human growth hormone: Guidelines for the care of people with spina bifida

2020 ◽  
Vol 13 (4) ◽  
pp. 549-555 ◽  
Author(s):  
Joseph O’Neil ◽  
John S. Fuqua
Keyword(s):  
Growth Hormone ◽  
Spina Bifida ◽  
Short Stature ◽  
Human Growth Hormone ◽  
Human Growth ◽  
Fourth Edition ◽  
Significant Percentage ◽  
Typical Peers

It is estimated that a significant percentage of individuals with spina bifida (SB) are shorter than their age-matched typical peers. Parents of children with spina bifida may ask if human growth hormone is appropriate for their child. This article discusses short stature and the use of human growth hormone among children with SB. This guideline was developed for SB Healthcare Guidelines from the 2018 Spina Bifida Association’s Fourth Edition of the Guidelines for the Care of People with Spina Bifida.

An idea alien to both worlds: why health care rationing is not acceptable in the USA and Russia

2019 ◽  
Vol 7 (3) ◽  
pp. 231-240
Author(s):  
Vasiliy V. Vlassov ◽  
Sergey V. Shishkin ◽  
Alla E. Chirikova ◽  
Anna V. Vlasova
Keyword(s):  
Health Care ◽  
Medical Care ◽  
Medical Profession ◽  
Treatment Options ◽  
Legal Framework ◽  
Health Care Rationing ◽  
Essential Drug List ◽  
More Care ◽  
The Usa ◽  
The Right

The simple idea of rationing appears unacceptable both for the relatively poor "socialist" health care in Russia and for the most expensive USA health care. In Russia the idea of rationing is unacceptable, because the Constitution promises free and unlimited medical care. Therefore, discussion is blocked from the top. In the USA the idea is unacceptable, because citizens are understood as having the right to free choice of legal access to any care, without intervention of a 'death jury'.<br/> We analyse the similarities and differences in the arguments rejecting explicit rationing in health care in the USA and Russia. We describe the legal framework in Russia related to rationing, and the results of a qualitative study of the understanding of the concept of rationing by Russian doctors and of the practices in Russian health care organizations to limit the use of expensive diagnostic and treatment options.<br/> While the Russian Constitution promises free medical care, unlimited, legally there are limits imposed by the quota of specific treatments, limited access to care abroad, and problematic access to drugs not included on the essential drug list for inpatient care. Explicit rationing is not rejected by society or by the medical profession. In medical organizations the more explicit techniques are a second opinion by a committee (physicians' commission), especially in the case of prescription of drugs and diagnostic tests. Physicians tend to behave as medical professionals do: provide more care to people in greater need.

Procreation Confounded

2019 ◽  
pp. 127-140
Author(s):  
Dov Fox
Keyword(s):  
Medical Care ◽  
Injury Severity ◽  
Treatment Options ◽  
Health Conditions ◽  
Medical Conditions ◽  
Diagnostic Uncertainty ◽  
Variable Expression ◽  
Care And Treatment ◽  
Relevant Factors

Procreation is confounded when clinical professionals misdiagnose, misrepresent, or switch reproductive cells or entities. These errors lead patients to initiate, continue, or terminate pregnancies in ways that thwart their efforts to have a child of one kind or another: How serious is that reproductive injury? Do its benefits outweigh its harms? What are the chances of it manifesting within certain windows of time and at varying levels of severity? How likely is it that misconduct is what caused procreation to be confounded? Is some other factor responsible in addition or instead? To what extent was genetic randomness or diagnostic uncertainty to blame? The seriousness of that harm depends on its foreseeable impact on people’s lives—injury severity is an objective inquiry that begins by asking what kind of child the plaintiffs wanted and why. The variable expression of medical conditions or other targeted traits ratchets up the guesswork to forecast how a defendant’s negligence that thwarted their prenatal selection can be expected to affect the plaintiff. But all this uncertainty needn’t keep courts from assessing how serious confounded procreation is in particular cases: Just because any such determination is bound to admit of some arbitrariness doesn’t mean injury severity can’t be worked out in a principled and systematic way. For health conditions, relevant factors include foreseeable implications for offspring lifespan, impairment, medical care, and treatment options. Courts should reduce dollar awards by however much confounded procreation can be expected to simultaneously benefit plaintiffs, depending on its associated reasons and repercussions.

scholarly journals Fatality as a Feature of Medical Care

2016 ◽  
Vol 54 (4) ◽  
pp. 250-252 ◽  
Author(s):  
Pablo Ruiz-Sada ◽  
Jon-Ander Atutxa-Fernández ◽  
Sara Fernández-Ferrer ◽  
Lara Palacios-García
Keyword(s):  
Atrial Fibrillation ◽  
Medical Care ◽  
Treatment Options ◽  
Daily Practice ◽  
Severe Complication ◽  
Bleeding Tendency ◽  
Clinical Scenario ◽  
Rare Entity ◽  
Spontaneous Bleeding

Abstract Taking advantage of an interesting clinical scenario, we want to introduce a discussion about fatality in our daily practice and the need to accept that. An 80 year-old man with non-traumatic spontaneous bleeding tendency came to the clinics. Although being on warfarin as a consequence of primary thrombotic prophylaxis due to an atrial fibrillation, full assessment was performed. Not only the rare entity found on him, but also the severe complication that happened afterwards challenged clinicians and led them to risky treatment options.

Diagnostik und Therapie bei HIV-Infektion – was muss der Hausarzt wissen?

2019 ◽  
Vol 144 (16) ◽  
pp. 1158-1165
Author(s):  
Juliane Ankert ◽  
Steve Rößler ◽  
Christian Flössner ◽  
Alexandra Jablonka ◽  
Benjamin T. Schleenvoigt
Keyword(s):  
Primary Care ◽  
General Practitioner ◽  
Hiv Infection ◽  
Medical Care ◽  
Treatment Options ◽  
Hiv Prevalence ◽  
Everyday Practice ◽  
Robert Koch Institute ◽  
Infected People ◽  
Diagnostik Und Therapie

AbstractAccording to the Robert Koch Institute, the estimated HIV prevalence in Germany is 86 100. On-third of the affected persons is over 50 years old. Overall, the prognosis of patients with HIV infection depends crucially on the time of diagnosis. The unfounded stigmatization of affected patients stands in the way of today's treatment options as it did 30 years ago. Every practice of primary care must also take into consideration the medical care of HIV-infected people. The purpose of this article is to make the general practitioner aware of this topic and to prepare for the necessary procedure in everyday practice in this rare but not unlikely situation.

496 Do Patients and Healthcare Providers Have Similar Perceptions of Available Narcolepsy Educational Materials and Treatment Options?

SLEEP ◽  
2021 ◽  
Vol 44 (Supplement_2) ◽  
pp. A195-A196
Author(s):  
Mark Patterson
Keyword(s):  
Medical Care ◽  
Health Care Providers ◽  
Medical Information ◽  
Treatment Options ◽  
Healthcare Providers ◽  
Holistic Approach ◽  
Care Providers ◽  
Written Information ◽  
National Organizations ◽  
Mean Time

Abstract Introduction Studies have shown that patients typically retain &lt;50% of the information communicated to them by their healthcare providers. This lack of retention can lead to serious problems and misunderstandings regarding the condition, its treatment, and course. The goal of this study was to compare the information sleep specialists report providing to patients with the materials narcolepsy patients recall receiving. Methods Deidentified on-line surveys were submitted to active members of the American Academy of Sleep Medicine and to patients with narcolepsy Type 1 (NT1) and Type 2 (NT2) via the cloud-based software service company SurveyMonkey. These patients were recruited from the private Facebook group ‘Doctors and Narcoleptic Patients’. Results Results were received from a total of 75 patients (68% NT1, 29% NT2, 3% uncertain type; mean time since diagnosis: 11 years) and 18 sleep specialists (mean time in practice: 22 years). Physicians reported that their practices provided written material about narcolepsy to patients 69% of the time. By contrast, only 32% of patients recall receiving written information. Regarding treatment options, the groups reported variable results, with 94% of doctors/86% of patients discussing modafinil/armodafinil, 89% of providers/68% of patients communicating about amphetamines/methylphenidate, and 83% of physicians/47% of patients considering sodium oxybate. Additionally, only 56% of physicians were aware of narcolepsy patient advocacy organizations. Conclusion With the ready availability of social media and the exchange of oft inaccurate medical information, it is essential that physicians supply their patients with accurate up-to-date materials, especially following the diagnosis of a life-altering condition such as narcolepsy. This study suggests that there is a mismatch between the information which physicians believe they are providing and the materials the patients recall receiving. In addition to the medical care sleep specialists provide, patients and their families frequently rely on support from condition-specific organizations. Health care providers should be aware of the local and national organizations and supply their patients with contact information in an effort to provide a more holistic approach to medical care. Efforts are necessary to educate physicians about their patients’ needs for on-going care, distinct from that provided solely in the clinical setting. Support (if any):

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