From the event "Specimen Science: Ethics and Policy Implications," held at Harvard Law School on November 16, 2015.
This event is a collaboration between The Center for Child Health and Policy at Case Western Reserve University and University Hospitals Rainbow Babies & Children’s Hospital; the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School; the Multi-Regional Clinical Trials Center of Harvard and Brigham and Women's Hospital; and Harvard Catalyst | The Harvard Clinical and Translational Science Center. It is supported by funding from the National Human Genome Research Institute and the Oswald DeN. Cammann Fund at Harvard University.
For more information, visit our website at http://petrieflom.law.harvard.edu/events/details/specimen-science-ethics-and-policy
Benefits of using NHS Choices in conjunction with GP consultationsNHSChoices
Results of a web survey that asked how people used the site to in relation to GP consultations. The report looks at the impact the NHS Choices information in relation to how prepared people are when they consult their GP. It also shows the extent to which site users reduce the number of times they see their GP as a result of the information in the NHS Choices site
From the event "Specimen Science: Ethics and Policy Implications," held at Harvard Law School on November 16, 2015.
This event is a collaboration between The Center for Child Health and Policy at Case Western Reserve University and University Hospitals Rainbow Babies & Children’s Hospital; the Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics at Harvard Law School; the Multi-Regional Clinical Trials Center of Harvard and Brigham and Women's Hospital; and Harvard Catalyst | The Harvard Clinical and Translational Science Center. It is supported by funding from the National Human Genome Research Institute and the Oswald DeN. Cammann Fund at Harvard University.
For more information, visit our website at http://petrieflom.law.harvard.edu/events/details/specimen-science-ethics-and-policy
Benefits of using NHS Choices in conjunction with GP consultationsNHSChoices
Results of a web survey that asked how people used the site to in relation to GP consultations. The report looks at the impact the NHS Choices information in relation to how prepared people are when they consult their GP. It also shows the extent to which site users reduce the number of times they see their GP as a result of the information in the NHS Choices site
Phillip Keen, (NAPWA) discusses the background, goals and objectives of NAPWA's billboard and web campaign encouraging people with HIV to get up to date about treatments. This presentation was given at the AFAO/NAPWA Gay Men's HIV Health Promotion Conference in May 2012.
A Decade of Behavioral HIV Prevention and Care Engagement Research in Uganda: Responding to Evolving Epidemic Response Priorities
Susan M. Kiene, PhD, MPH
March 2nd, 2018
UCSD HIV & Global Health Rounds
Dr. Kathleen Brady of the AIDS Activities Coordinating Office discussed three cycles of the National HIV Behavioral Surveillance in Philadelphia, including cycles with men who have sex with men (MSM), high-risk heterosexuals, and injection drug users. This presentation took place at the Philadelphia EMA HIV Integrated Planning Council meeting on Thursday, January 11, 2018.
Antiretroviral therapy for pregnant women living with HIV or hepatitis B: Wha...Health Evidence™
Health Evidence™ hosted a 90 minute webinar examining the effect of antiretroviral therapy for pregnant women living with HIV or hepatitis B. Click here for access to the audio recording for this webinar: https://youtu.be/91moFmIoI3w
Dr. Reed A.C. Siemieniuk, MD, PhD(c), Department of Medicine, University of Toronto, Department of Health Research Methods, Evidence, and Impact, McMaster University led the session and presented findings from their recent systematic review:
Siemieniuk R, Foroutan F, Mirza R, Mah Ming J, Alexander PE, Agarwal A, et al. (2017). Antiretroviral therapy for pregnant women living with HIV or hepatitis B: A systematic review and meta-analysis. BMJ Open, 7(9), e019022.
This review assesses the impact of various antiretroviral/antiviral regimens in pregnant women living with HIV or hepatitis B virus (HBV). Forty-three studies were included in the review. The most common comparison was tenofovir and emtricitabine versus zidovudine and lamivudine. There was no apparent difference between tenofovir-based regimens and alternatives in maternal outcomes, including serious laboratory adverse events and serious clinical adverse events. There was no difference between NRTIs in vertical transmission of HIV or vertical transmission of HBV. We found moderate certainty evidence that tenofovir/emtricitabine increases the risk of stillbirths and early neonatal mortality and the risk of early premature delivery at less than 34 weeks. Tenofovir/emtricitabine is likely to increase stillbirth/early neonatal death and early premature delivery compared with zidovudine/lamivudine, but certainty is low when they are not coprescribed with lopinavir/ritonavir. Other outcomes are likely similar between antiretrovirals.
Lyuba Lytvyn, MSc, PhD(c), Department of Health Research Methods, Evidence, and Impact, McMaster University also briefly presented the findings from their linked systematic review on values and preferences of pregnant women with HIV:
Lytvyn L, Siemieniuk R, Dilmitis S, Ion A, Chang Y, Bala M, et al. (2017). Values and preferences of women living with HIV who are pregnant, postpartum or considering pregnancy on choice of antiretroviral therapy during pregnancy. BMJ Open, 7(9), e019023.
Presented by Michael Horberg, MD, MAS, FACP, FIDSA,
Executive Director Research, Mid-Atlantic Permanente Medical Group, Director, HIV/AIDS Kaiser Permanente, at the 2012 National Chlamydia Coalition meeting.
This presentation by Cathy Schoen, Senior Vice President of the Commonwealth Fund, uses results from the Fund’s annual International Health Policy surveys plus US examples to illustrate the potential to re-design health care in the 21st century with a focus on primary care linked to a continuum of care.
Cathy shares insights gleaned from the Commonwealth Fund’s three most recent international surveys—general population (2013), primary care doctors (2012), and adults with complex medical conditions (2011)—that compare Australia with 10 other countries.
Cathy also highlights examples of care system innovation and improvement.
Nutrition in a nutshell was presented by Catherine Collins at St George's Healthcare NHS Trust as part of a selection of presentations offered to foundation trust members. If your interested in becoming a FT member please email members@stgeorges.nhs.uk
Phillip Keen, (NAPWA) discusses the background, goals and objectives of NAPWA's billboard and web campaign encouraging people with HIV to get up to date about treatments. This presentation was given at the AFAO/NAPWA Gay Men's HIV Health Promotion Conference in May 2012.
A Decade of Behavioral HIV Prevention and Care Engagement Research in Uganda: Responding to Evolving Epidemic Response Priorities
Susan M. Kiene, PhD, MPH
March 2nd, 2018
UCSD HIV & Global Health Rounds
Dr. Kathleen Brady of the AIDS Activities Coordinating Office discussed three cycles of the National HIV Behavioral Surveillance in Philadelphia, including cycles with men who have sex with men (MSM), high-risk heterosexuals, and injection drug users. This presentation took place at the Philadelphia EMA HIV Integrated Planning Council meeting on Thursday, January 11, 2018.
Antiretroviral therapy for pregnant women living with HIV or hepatitis B: Wha...Health Evidence™
Health Evidence™ hosted a 90 minute webinar examining the effect of antiretroviral therapy for pregnant women living with HIV or hepatitis B. Click here for access to the audio recording for this webinar: https://youtu.be/91moFmIoI3w
Dr. Reed A.C. Siemieniuk, MD, PhD(c), Department of Medicine, University of Toronto, Department of Health Research Methods, Evidence, and Impact, McMaster University led the session and presented findings from their recent systematic review:
Siemieniuk R, Foroutan F, Mirza R, Mah Ming J, Alexander PE, Agarwal A, et al. (2017). Antiretroviral therapy for pregnant women living with HIV or hepatitis B: A systematic review and meta-analysis. BMJ Open, 7(9), e019022.
This review assesses the impact of various antiretroviral/antiviral regimens in pregnant women living with HIV or hepatitis B virus (HBV). Forty-three studies were included in the review. The most common comparison was tenofovir and emtricitabine versus zidovudine and lamivudine. There was no apparent difference between tenofovir-based regimens and alternatives in maternal outcomes, including serious laboratory adverse events and serious clinical adverse events. There was no difference between NRTIs in vertical transmission of HIV or vertical transmission of HBV. We found moderate certainty evidence that tenofovir/emtricitabine increases the risk of stillbirths and early neonatal mortality and the risk of early premature delivery at less than 34 weeks. Tenofovir/emtricitabine is likely to increase stillbirth/early neonatal death and early premature delivery compared with zidovudine/lamivudine, but certainty is low when they are not coprescribed with lopinavir/ritonavir. Other outcomes are likely similar between antiretrovirals.
Lyuba Lytvyn, MSc, PhD(c), Department of Health Research Methods, Evidence, and Impact, McMaster University also briefly presented the findings from their linked systematic review on values and preferences of pregnant women with HIV:
Lytvyn L, Siemieniuk R, Dilmitis S, Ion A, Chang Y, Bala M, et al. (2017). Values and preferences of women living with HIV who are pregnant, postpartum or considering pregnancy on choice of antiretroviral therapy during pregnancy. BMJ Open, 7(9), e019023.
Presented by Michael Horberg, MD, MAS, FACP, FIDSA,
Executive Director Research, Mid-Atlantic Permanente Medical Group, Director, HIV/AIDS Kaiser Permanente, at the 2012 National Chlamydia Coalition meeting.
This presentation by Cathy Schoen, Senior Vice President of the Commonwealth Fund, uses results from the Fund’s annual International Health Policy surveys plus US examples to illustrate the potential to re-design health care in the 21st century with a focus on primary care linked to a continuum of care.
Cathy shares insights gleaned from the Commonwealth Fund’s three most recent international surveys—general population (2013), primary care doctors (2012), and adults with complex medical conditions (2011)—that compare Australia with 10 other countries.
Cathy also highlights examples of care system innovation and improvement.
Nutrition in a nutshell was presented by Catherine Collins at St George's Healthcare NHS Trust as part of a selection of presentations offered to foundation trust members. If your interested in becoming a FT member please email members@stgeorges.nhs.uk
Between September and December 2014 we have conducted a global online survey to 45,000 children healthcare professionals to identify discrepancies and regional trends on everyday practice, compliance with guidelines, education gaps and preferred education sources in a number of areas including, HPV and Meningitis Vaccinations, Rare Diseases, Breastfeeding and Skin Care.
667 healthcare experts, mostly general pediatricians (45.24%) responded from 84 countries. Most respondents were clinically active at general hospitals (29.89%), children’s hospitals (23.65%), private practice (18.7 %), university (17.77 %), and primary care (7.26%).
Slide Presentation from the July 9, 2013 webinar to present results of a survey of patients and clinicians assessing views on comparative effective research (CER) and engagement in research.
How is the Coronavirus Impacting Healthcare Perceptions and Behaviors? (Wave ...Ed Bennett
Research from Klein & Partners and The DRG
This year’s Omnibus is a bit different from past years. We focus the entire survey on consumer reactions to the Coronavirus and we will conduct three waves of this survey to track how these reactions change as we get past the ‘peak’ and move into our ‘new’ normal.
This presentation summarizes findings from the first wave conducted in early April. Wave II will field in late April/early May after the peak and the third wave will field sometime in late May/early June as we emerge in our new normal. Field times are fluid as we monitor the progress of this pandemic.
Also, this year, we are pleased that our long-time research partner and friends – The DRG – have partnered on this research with us.
Klein & Partners and The DRG would like to thank you for your extraordinary efforts during these unprecedented times in recent history to help our local communities keep safe and informed about the latest developments and the support available on the Coronavirus.
--Rob Klein, Founder & CEO, Klein & Partners
Celine Lewis-Diagnóstico prenatal no invasivo y diagnóstico genético reproduc...Fundación Ramón Areces
Los días 8 y 9 de junio de 2017 organizamos en la Fundación Ramón Areces con el Ciberer y la Fundación Jiménez Díaz un simposio internacional sobre 'Diagnóstico prenatal no invasivo y diagnóstico genético reproductivo'. Coordinado por la doctora Ana Bustamante, del servicio de Genética del Hospital Universitario Fundación Jiménez Díaz, tuvo como objetivo mostrar los últimos avances en el campo de la genética reproductiva a nivel preimplantacional, prenatal, e, incluso, preconcepcional.
2014 trends survey of child health care professionals on BreastfeedingGRIVEAS ASSOCIATES
Between September and December 2014 we have conducted a global online survey to 45,000 children healthcare professionals to identify discrepancies and regional trends on everyday practice, compliance with guidelines, education gaps and preferred education sources in a number of areas including, HPV and Meningitis Vaccinations, Rare Diseases, Breastfeeding and Skincare.
667 healthcare experts, mostly general pediatricians (45.24%) responded from 84 countries. Most respondents were clinically active at general hospitals (29.89%), children’s hospitals (23.65%), private practice (18.7 %), university (17.77 %), and primary care (7.26%).
2014 trends survey of child health care professionals on HPV vaccinations GRIVEAS ASSOCIATES
Between September and December 2014 we have conducted a global online survey to 45,000 children healthcare professionals to identify discrepancies and regional trends on everyday practice, compliance with guidelines, education gaps and preferred education sources in a number of areas including, HPV and Meningitis Vaccinations, Rare Diseases, Breastfeeding and Skincare.
667 healthcare experts, mostly general pediatricians (45.24%) responded from 84 countries. Most respondents were clinically active at general hospitals (29.89%), children’s hospitals (23.65%), private practice (18.7 %), university (17.77 %), and primary care (7.26%).
Trouble Getting Pregnant? Get Second Opinion, Hear from an Experienced DoctorDimitri Popov
Dr Gary Levy, a Board-Certified Reproductive Endocrinologist, shares his opinion on fertility causes, treatment plans and strategies, do's and don't when you try to conceive
2014 trends survey of Child health care professionals on Rare Diseases GRIVEAS ASSOCIATES
Between September and December 2014 we have conducted a global online survey to 45,000 children healthcare professionals to identify discrepancies and regional trends on everyday practice, compliance with guidelines, education gaps and preferred education sources in a number of areas including, HPV and Meningitis Vaccinations, Rare Diseases, Breastfeeding and Skincare.
667 healthcare experts, mostly general pediatricians (45.24%) responded from 84 countries. Most respondents were clinically active at general hospitals (29.89%), children’s hospitals (23.65%), private practice (18.7 %), university (17.77 %), and primary care (7.26%).
2014 trends survey of child health care professionals on Meningitis VaccinationsGRIVEAS ASSOCIATES
Between September and December 2014 we have conducted a global online survey to 45,000 children healthcare professionals to identify discrepancies and regional trends on everyday practice, compliance with guidelines, education gaps and preferred education sources in a number of areas including, HPV and Meningitis Vaccinations, Rare Diseases, Breastfeeding and Skincare.
667 healthcare experts, mostly general pediatricians (45.24%) responded from 84 countries. Most respondents were clinically active at general hospitals (29.89%), children’s hospitals (23.65%), private practice (18.7 %), university (17.77 %), and primary care (7.26%).
Defecation
Normal defecation begins with movement in the left colon, moving stool toward the anus. When stool reaches the rectum, the distention causes relaxation of the internal sphincter and an awareness of the need to defecate. At the time of defecation, the external sphincter relaxes, and abdominal muscles contract, increasing intrarectal pressure and forcing the stool out
The Valsalva maneuver exerts pressure to expel faeces through a voluntary contraction of the abdominal muscles while maintaining forced expiration against a closed airway. Patients with cardiovascular disease, glaucoma, increased intracranial pressure, or a new surgical wound are at greater risk for cardiac dysrhythmias and elevated blood pressure with the Valsalva maneuver and need to avoid straining to pass the stool.
Normal defecation is painless, resulting in passage of soft, formed stool
CONSTIPATION
Constipation is a symptom, not a disease. Improper diet, reduced fluid intake, lack of exercise, and certain medications can cause constipation. For example, patients receiving opiates for pain after surgery often require a stool softener or laxative to prevent constipation. The signs of constipation include infrequent bowel movements (less than every 3 days), difficulty passing stools, excessive straining, inability to defecate at will, and hard feaces
IMPACTION
Fecal impaction results from unrelieved constipation. It is a collection of hardened feces wedged in the rectum that a person cannot expel. In cases of severe impaction the mass extends up into the sigmoid colon.
DIARRHEA
Diarrhea is an increase in the number of stools and the passage of liquid, unformed feces. It is associated with disorders affecting digestion, absorption, and secretion in the GI tract. Intestinal contents pass through the small and large intestine too quickly to allow for the usual absorption of fluid and nutrients. Irritation within the colon results in increased mucus secretion. As a result, feces become watery, and the patient is unable to control the urge to defecate. Normally an anal bag is safe and effective in long-term treatment of patients with fecal incontinence at home, in hospice, or in the hospital. Fecal incontinence is expensive and a potentially dangerous condition in terms of contamination and risk of skin ulceration
HEMORRHOIDS
Hemorrhoids are dilated, engorged veins in the lining of the rectum. They are either external or internal.
FLATULENCE
As gas accumulates in the lumen of the intestines, the bowel wall stretches and distends (flatulence). It is a common cause of abdominal fullness, pain, and cramping. Normally intestinal gas escapes through the mouth (belching) or the anus (passing of flatus)
FECAL INCONTINENCE
Fecal incontinence is the inability to control passage of feces and gas from the anus. Incontinence harms a patient’s body image
PREPARATION AND GIVING OF LAXATIVESACCORDING TO POTTER AND PERRY,
An enema is the instillation of a solution into the rectum and sig
Leading the Way in Nephrology: Dr. David Greene's Work with Stem Cells for Ki...Dr. David Greene Arizona
As we watch Dr. Greene's continued efforts and research in Arizona, it's clear that stem cell therapy holds a promising key to unlocking new doors in the treatment of kidney disease. With each study and trial, we step closer to a world where kidney disease is no longer a life sentence but a treatable condition, thanks to pioneers like Dr. David Greene.
Navigating Challenges: Mental Health, Legislation, and the Prison System in B...Guillermo Rivera
This conference will delve into the intricate intersections between mental health, legal frameworks, and the prison system in Bolivia. It aims to provide a comprehensive overview of the current challenges faced by mental health professionals working within the legislative and correctional landscapes. Topics of discussion will include the prevalence and impact of mental health issues among the incarcerated population, the effectiveness of existing mental health policies and legislation, and potential reforms to enhance the mental health support system within prisons.
The dimensions of healthcare quality refer to various attributes or aspects that define the standard of healthcare services. These dimensions are used to evaluate, measure, and improve the quality of care provided to patients. A comprehensive understanding of these dimensions ensures that healthcare systems can address various aspects of patient care effectively and holistically. Dimensions of Healthcare Quality and Performance of care include the following; Appropriateness, Availability, Competence, Continuity, Effectiveness, Efficiency, Efficacy, Prevention, Respect and Care, Safety as well as Timeliness.
Navigating the Health Insurance Market_ Understanding Trends and Options.pdfEnterprise Wired
From navigating policy options to staying informed about industry trends, this comprehensive guide explores everything you need to know about the health insurance market.
QA Paediatric dentistry department, Hospital Melaka 2020Azreen Aj
QA study - To improve the 6th monthly recall rate post-comprehensive dental treatment under general anaesthesia in paediatric dentistry department, Hospital Melaka
Medical Technology Tackles New Health Care Demand - Research Report - March 2...pchutichetpong
M Capital Group (“MCG”) predicts that with, against, despite, and even without the global pandemic, the medical technology (MedTech) industry shows signs of continuous healthy growth, driven by smaller, faster, and cheaper devices, growing demand for home-based applications, technological innovation, strategic acquisitions, investments, and SPAC listings. MCG predicts that this should reflects itself in annual growth of over 6%, well beyond 2028.
According to Chris Mouchabhani, Managing Partner at M Capital Group, “Despite all economic scenarios that one may consider, beyond overall economic shocks, medical technology should remain one of the most promising and robust sectors over the short to medium term and well beyond 2028.”
There is a movement towards home-based care for the elderly, next generation scanning and MRI devices, wearable technology, artificial intelligence incorporation, and online connectivity. Experts also see a focus on predictive, preventive, personalized, participatory, and precision medicine, with rising levels of integration of home care and technological innovation.
The average cost of treatment has been rising across the board, creating additional financial burdens to governments, healthcare providers and insurance companies. According to MCG, cost-per-inpatient-stay in the United States alone rose on average annually by over 13% between 2014 to 2021, leading MedTech to focus research efforts on optimized medical equipment at lower price points, whilst emphasizing portability and ease of use. Namely, 46% of the 1,008 medical technology companies in the 2021 MedTech Innovator (“MTI”) database are focusing on prevention, wellness, detection, or diagnosis, signaling a clear push for preventive care to also tackle costs.
In addition, there has also been a lasting impact on consumer and medical demand for home care, supported by the pandemic. Lockdowns, closure of care facilities, and healthcare systems subjected to capacity pressure, accelerated demand away from traditional inpatient care. Now, outpatient care solutions are driving industry production, with nearly 70% of recent diagnostics start-up companies producing products in areas such as ambulatory clinics, at-home care, and self-administered diagnostics.
One of the most developed cities of India, the city of Chennai is the capital of Tamilnadu and many people from different parts of India come here to earn their bread and butter. Being a metropolitan, the city is filled with towering building and beaches but the sad part as with almost every Indian city
CHAPTER 1 SEMESTER V PREVENTIVE-PEDIATRICS.pdfSachin Sharma
This content provides an overview of preventive pediatrics. It defines preventive pediatrics as preventing disease and promoting children's physical, mental, and social well-being to achieve positive health. It discusses antenatal, postnatal, and social preventive pediatrics. It also covers various child health programs like immunization, breastfeeding, ICDS, and the roles of organizations like WHO, UNICEF, and nurses in preventive pediatrics.
Spina Bifida Association of Kentucky research presentation- Kristen Ray
1. Powered by
Delivering the Diagnosis of Spina
Bifida: Patient Outlook
Primary Researcher: Kristen E Ray
Kristen.ray1@uky.edu
Mentor: Colleen Payne, SBAK Director (2011-2014)
2. Table of Contents
1. Introduction to Spina Bifida
2. Hypothesis
3. Relevance of Research
4. Methodology and Survey Results
5. Conclusion
6. Research Limitations
7. Research Implications
2
3. What is Spina Bifida?
● Portion of spinal cord and meninges exposed into a fluid sac.
● 3 different forms of Spina Bifida, causing levels of severity
3
Most Mild Most Severe
4. Relevancefor Research
● NEW!- KY legislation – Senate Bill 159- information from medical providers written and
reviewed by experts.
- Experts: http://spinabifidaassociation.org/about-sba/advisory-council/
● Many doctors, specifically OBGYN’s, overestimate the risk accompanying babies born
with Spina Bifida, as do Maternal Fetal Medicine doctors (MFM’s).
● Catherine Shaer M.D. (MOMS study) in 2007 reported out of 486 questionnaires, most
doctors overestimated severity of Spina Bifida prognosis.
- ONLY 2% felt confident in giving prognosis!
- 19% still continue to manage pregnancies on their own!
- Remainder give referrals
● Colleen Payne, Director of SBAK, (Delivering the Diagnosis) reported in 2009 expectant
mothers in the U.S. are receiving out-of-date, inaccurate information when receiving the
diagnosis and prognosis.
4
5. Hypothesis
● By analyzing the quality of delivering
the diagnosis of Spina Bifida to expectant
and new mothers within the past year,
we can determine if healthcare providers
are supplying up-to-date, accurate
information to these parents to help
them make a more informed decision for
treatment.
5
10. How would you best characterize the way your
doctor explained a high AFP result?
9%
13.85%
15.38%
23.08%
40%
0% 5% 10% 15% 20% 25% 30% 35% 40% 45%
It's likely a false positive (6)
No explanation (9)
Other (please specify) (10)
It's very likely your baby has a neural tube
defect (NTD) (15)
Not applicable (diagnosis at birth or you
received a low level AFP test result) (26)
11. 11
3.08%
4.62%
4.62%
6.15%
7.69%
30.77%
43.08%
0% 10% 20% 30% 40% 50%
Pediatrician (at birth) (2)
Other (3)
Genetic Counselor (3)
Neurosurgeon (4)
Ultrasound Technician (5)
OBGYN (20)
Maternal Fetal Medicine doctor (MFM)
(28)
Number of Expectant Mothers
TypeofHealthcareProvider
Healthcare Providers Who Gave Initial
Diagnosis
12. Did you know anyone with Spina Bifida before you
received the Diagnosis?
30.77%
69.23%
0% 10% 20% 30% 40% 50% 60% 70% 80%
Yes
(20)
No
(45)
13. Previous Knowledge of Spina Bifida
Before Initial Diagnosis?
1.54%
1.54%
26.15%
40%
30.77%
0% 5% 10% 15% 20% 25% 30% 35% 40% 45%
A tremendous amount (1)
Quite a bit (1)
A little bit (17)
Almost None (26)
None (20)
Number of Expectant Mothers
KnowledgeLevel
14. Referrals
0
69.23%
0% 10% 20% 30% 40% 50% 60% 70% 80%
No referrals (0)
Other (6)
Women's Clinic for termination (9)
Spina Bifida Clinic (20)
Fetal Care Center (27)
Genetic Counselor (35)
Maternal Fetal Medicine doctor (42)
Neurosurgeon (45)
Expectant Mothers
HealthcareProviders
15. In your opinion, what additional resources could have
helped you through this difficult time?
12.70%
41.27%
50.79%
69.84%
84.13%
0% 10% 20% 30% 40% 50% 60% 70% 80% 90%
5
4
3
2
1
KEY
1. Connection with
experienced parents
(53)
2. Contact information to a
Spina Bifida support
organization (44)
3. Written information
about Spina Bifida (32)
4. Spina Bifida education
seminars (26)
5. Other (8)
16. How do you think the health care provider presented
information about SB? (referring to the first person to give you
the prognosis)
20.00%
30.77%
10.77%
38.46%
0% 5% 10% 15% 20% 25% 30% 35% 40% 45%
Did Not Speculate
Both Cases Equally
Best Case Scenario Only or Mostly
Worst Case Scenario Only or Mostly
% of Expectant Mothers’
QualityofInformationGiven
17. When you were given the initial Spina Bifida diagnosis
(referring to the FIRST person to give you the diagnosis), on
which options were you counseled/given, and in what order?
18. Which, if any, resources were shared with you during your
pregnancy by your health care provider (first person that gave
you the diagnosis)? (May choose more than one)
Answer Choices Responses Respondents
None 44.62% 29
Pertinent websites to visit 26.15% 17
Written up-to-date information on SB 20% 13
SB brochure 18.46% 12
Contact information/web address for the National Spina Bifida
Association (SBA)
13.85% 9
Other (please specify) 13.85% 9
Contact information/web address for your local Spina Bifida support
Organization
10.77% 7
In depth, information on SB (booklet) 7.69% 5
Contact information for parent having child/adult with SB 3.08% 2
Total Respondents: 65
19. How confident did you feel in your ability to explain the
Diagnosis and Prognosis to family members, friends, and
other close ones after the initial diagnosis (after the first
person gave you the diagnosis)?
43.08%
43.08%
13.85%
49.23%
36.92%
13.85%
0% 20% 40% 60%
Not at all confident
Somewhat confident
Very confident
Percent of Expectant or New Mothers
ConfidenceLevel
KEY
Prognosis Diagnosis
Very Confident
(9)
Very Confident
(9)
Somewhat confident
(24)
Somewhat confident
(28)
Not at all confident
(32)
Not at all confident
(28)
20. How confident did you feel in your ability to
raise a child with Spina Bifida after your initial
diagnosis (after the first person gave you the
diagnosis)?
30.77%
20%
30.77%
12.31%
6.15%
0% 10% 20% 30% 40%
Not confident at all (20)
Not very confident (13)
Somewhat confident (20)
Confident (8)
Very confident (4)
Percent of Expectant or New Mothers
ConfidenceLevel
21. At the time of the initial diagnosis, how
knowledgeable did you perceive your
healthcare provider to be about SB?
7.69%
23.08%
33.85%
26.15%
9.23%
I didn't question their
knowledge level (5)
Not at all
knowledgeable (15)
Somewhat
knowledgeable (22)
Very knowledgeable
(17)
Expert (6)
22. How was the initial diagnosis given to you?
18.46%
1.54%
0.00%
10.77%
0% 5% 10% 15% 20%
Other (please speify) (12)
Online through online health records (1)
Received results in the mail (0)
At the next office visit (7)
Percent of Expectant or New Mothers
PresentationofInitialDiagnosis
23. How much did you rely on your healthcare provider
for information about Spina Bifida to help you make
treatment decisions (postnatal surgery, fetal
surgery, etc.)
16.92%
29.23%
21.54%
32.31%
0% 10% 20% 30% 40%
I didn't rely on my provider at all to help me
make treatment decisions (11)
I relied very little on my provider to help me
make treatment decisions (19)
I relied somewhat on my provider to help me
make treatment decisions (14)
I relied a lot on my provider to help me make
treatment decisions (21)
24. What other information did you take into
account when making your decision about
options?
4.62%
7.69%
23.08%
24.62%
38.46%
50.77%
55.38%
78.46%
0% 10% 20% 30% 40% 50% 60% 70% 80% 90%
Not applicable (diagnosis at birth) (3)
Other (please specifiy) (5)
First Healthcare professionals advice (first
person to give the diagnosis) (15)
Friends' and family member's advice (16)
Religious beliefs (25)
Online message boards and groups (33)
The advice of multiple healthcare
professionals including Spina Bifida…
My own research (51)
Percent of Expectant Mothers
Factorsaffectingdecision
25. What decision did you ultimately decide?
0%
1.54%
3.08%
36.92%
58.46%
0% 10% 20% 30% 40% 50% 60% 70%
Adoption (0)
Termination (1)
Have not decided yet (2)
Fetal Surgery (24)
Postnatal surgery (38)
Percent of Expectant and New Mothers
Decision
26. Conclusion
● Results have not changed since the 2009 “Delivering the Diagnosis”
survey by Colleen Payne or since the 2007 “MOMS” study done by
Catherine Shaer.
● Healthcare providers are not providing the information patients need
in order to make informed decisions about treatment.
● Mothers are seeking connections with support groups.
● Ky legislation law should provide a better knowledge base for
providers to give higher quality diagnosis and prognosis to expectant
and new mothers.
26
27. Limitations
● Accessing OBGYN’s or MFM’s
● Lack of participation in survey
● Lack credibility
● Expectant parents’ memory and experience of what happened
● Relied only on social media for respondents
27
28. Implications
● Reduce stress amongst mother’s post Spina Bifida Diagnosis
● OBGYN educated by SBA and SB specialist (neurosurgeon and fetal care center)
● Reduce public misconception
● Beyond the scope of our small target population, worldwide possibility
● Replicate study in a few years and include worldwide populations or specific ethnic group
● Legislation nationwide, worldwide
● Symposium held for diagnosing disabilities offered to doctors
28
29. Acknowledgements
Colleen Payne, SBAK Executive Director
Dr. Bruce Webb
The University of Kentucky ABT program and its faculty and staff
My Family
Tyler Ramey, Andrea Edin, Beth Centner, Rebecca Norcross and Kelly Stansbury
Each of you here today
29
Name. Thank you for coming to learn about my research as an agricultural biotechnologist. My work consisted of determining the quality of Delivering the Diagnosis of Spina Bifida from several Patient’s Outlook.
We will first discuss… 1. An Intro to SB, I will give some minor background information about SB. However bc we only have 12 minutes, I wont too detailed. If you have further questions about SB, you can ask me at the end of the presentation or you can always contact me by e-mail, which is listed on the 1st pg of this presentation. 2. I will then disclose my hypothesis. 3. Followed by… explaining the relevance of my research. Subsequently, I will briefly discuss the meth. and results 4.And finally, I will reveal my conclusions and back up my hypothesis followed by limitations and implications for this research.
So What is Spina Bifida. The nervous system forms apprx. within the 1st 2 wks of pregnancy. Resarch shows lack of appropriate levels of folic acid can lead to underdeveloped neural tissue. When SB occurs, either a vertebra in the vertebral column is missing or in more severe cases the neural tissue doesn’t completely close up around the spinal cord causing a portion of spinal cord and men. to protrude into a fluid-filled sac.. If sac forms, this most likely causes some level of paralysis in lower extremities of the body often accompanied with minor lower back pain and scoliosis. 3 diff. forms. This study only focuses on the 2 forms of SB that can be detected before birth by various testing, called Meningocele and Mylomeningocele. Occulta (most mild form of SB) isn’t diagnosed before birth. There is a few routine surgery options to chose from in order for these babies to still live healthy lifestyles and are preformed before or after birth to close this opening in the spine, which u will see later in presentation.
We will discuss the 1st bullet in more detail later, but it is important to mention here for relevance purposes. There is a new law in effect as of March 24th, 2015. On this date, Senate Bill 159 became the first law of its kind in the nation, ensuring expectant parents across Kentucky will receive current, evidence-based information from medical providers reviewed by experts. These experts are the Spina Bifida Associations Professional advisory council consisting of specialists, such as neurosurgeons, urologists, developmental pediatrician, neuropsychologist to name a few. I have listed the website for your convenience if you would like to know more information about the advisory council.
I decided to focus my research project on surveying expectant and new mothers of babies with SB whom received the diagnosis and prognosis within the past year to determine the quality of information these mothers were receiving from healthcare providers giving the diagnosis. This is important bc research shows first bullet.
This statement is supported by research preformed by Shaer and Payne… Shaer’s research in 2007 involved surveying 486 doctors whom were giving SB prognosises. She assessed their knowledge about SB & the results showed only 2% confident. 19%, remainder referrals. Concluding doctors specifically OBGYN’s and MFM’s aren’t making the efforts to learn the information needed b4 giving the prognosis to parents.
My research project mimiked the previous study done by Colleen Payne called Delivering the Diagnosis. She reported in 2009 that exp. Mothers… hindering these parents to make informed treatment decisions.
I wanted to know if the results she found had changed at all within the past 5 years.
1.
2.
Make sure to say this survey was only for the US.
Since you receive the initial diagnosis between 16 weeks thru birth its safe to say Approximately 78% of respondents received their diagnosis 7 or more months ago. So we can say their babies are here now. Less than 25% haven’t met their babies yet. Good for us bc u can better access whether your healthcare provider was accurate or not.
Our research was only conducted for recipients in the US, however we did get some responses for other places like Port of Spain. This slide shows the places we received the 65 valid responses from expectant and new mothers according to each recipients IP address received upon submitting the survey to Surveymonkey.
Alpha fetal proteins is a a protein produced by a fetus, present in amniotic fluid & bloodstream of the mother. Levels of the protein can be measured to detect certain congenital defects such as spina bifida and Down syndrome. Usually, the first tip of sb. Gives odds of ntd., not when given official diagnosis. Mothers r usually sent for extra testing if afp level is elevated. 26% said they had a normal afp test, so they were blind sided at birth.
We tried to word this as clearly as possibly but ppl didn’t answer in a relevant way bc they didn’t seem to understand the question. Tell about other examples, like some didn’t understand the question bc of the comments made. For example, … and put %
Process: Most ppl go to OBGYN for ultrasound. Whats happened is the OBGYN saw something strange and majority of OBGYNs referred to MFM for official diagnosis. So this is what we hoped for and expected. Do pie chart instead for percentages.
This is what we expected.
The day of the initial diagnosis parents are relying on the docs information completely. Majority of mothers said they had no prior knowledge of SB b4 intitial diagnosis. Therefore, The first info they get about sb may be from that doc giving info. It is thus very important to make sure doctors are giving accurate, up-to-date information to these mothers. However, remember from Shaer study, these doctor were not confident in giving prognosis. Majority of these healthcare providers also don’t specialize in sb and mothers are using this information to make treatment decisions!
Mention can pick multiple answers. Add % as far as like 65% were referred to neurosurgeon. Good that’s happening but still need to see more than that, that should be the main referral. Parents are seeking info and neuro is the other accurate provider to give you accurate info and its very comforting to patients and make ethical informed deicions. Others: perinatologist, midwife.
Majority answers say parents are craving the need to set up networks, and SB chapters are a great resource to connect pts. so SBA can solve this issue easily . Delete one or the other after editing ppt. Mention could pick more than one answer here. 1 and 2 go hand and hand. Mention a few on the others option: Should be shown positive photos of happy kids and adults with SB, Support group, a consult with the neurosurgeon, Better resources and referrals early on, counselor, fetal surgery information. Two respondents did skip this answer, we didn’t set this question as required.
Key question! I want to zip thru these results, u can look at them in front of you more in detail, but I want to stress the importance of this slide. Notice 38% of respondents received worst case scenario and Remember… the vast majority of these expectant mothers have no prior knowledge of SB. So they have nothing to base that info on, nothing to counter that info with. As far as these mothers know, this is the only way their future child will be!
Almost one third of respondents answered the first treatment option their healthcare provider- term. Was first thing doc said. Mention Option not presented and 1st option column. Bring up a few facts. Doctors also aren’t thinking about SB bc 73% respond that this option wasn’t even presented but they are thinking about termination; So these healthcare providers have other options that they aren’t presenting.
The most answered choice is None!
Only 20% of respondents received written up-to-date info on SB. Hopefully, Senate Bill 159 will change this number since it has now gone into effect; so we should see an increase in this along with Contact and web address info for the National SBA and Ky’s local chapter, however, remember this bill is only in effect in KY. Expectant mothers not living in KY will still lack this information upon initial diagnosis.
Again, almost half of these expectant mothers at the time of the initial diagnosis aren’t receiving the information they need to be competent in explainging Spina Bifida; specifically the prognosis.
This is pretty much hat we expected to see. Mothers aren’t confident because there doctors aren’t confident in giving diagnosis and therefore aren’t giving out the information needed.
This is what we expected to see. 69% assumed the person giving diagnosis had a lot of knowledge or just didn’t think to question them. Majority of these mothers have no prior knowledge so they assumed the information they were receiving from the doc is correct.
Not significant. What we expected. Check response for online answer get with colleen if weird. Specify other answers, have all on note card in case they ask.
We asked how much the expectant mothers relied on their health provide for information about SB to help them make their treatment options. Therefore, again, its very important to make sure these doctors have up-to-date, accurate info. Results are what we found and expected.
Answer: My own research- vague (we assume googled it) this is prob. the worst thing u can do bc what you find on google. You find worst case scenario or unreliable information and took into account when making their decision. Great that half got online message boards goes back to mothers seeking connections and more information.
Also, reference other options: neurosurgeon's prognosis, I haven’t met with the team of doctors to decide yet, health insurance coverage was a huge factor, Geneticist and MFM asked if we were keeping pregnancy.
Pleased to see we did receive one response from a mother who Terminated. I know there are many mothers out there not receiving this accurate info. And even though I wasn’t able to reach many who have terminated, the fact that this mother is searching for more information leads me to believe she didn’t receive the information she needed at the initial diagnosis.
Think on this more, maybe I can come up with better ones!