Spina Bifida Association of Kentucky research presentation- Kristen RayKristen Ray
Healthcare providers are still not adequately informing expectant mothers about spina bifida when delivering the initial diagnosis. A survey of 65 expectant or new mothers found that providers often overestimate the severity of prognosis and do not provide sufficient information or referrals to support organizations. As a result, mothers feel unprepared to explain the diagnosis or make treatment decisions. They rely heavily on their own research and connecting with support groups. The study implications are that healthcare provider education and legislation could help ensure mothers receive up-to-date, accurate information to make fully informed choices.
Routine HIV Testing in the Community Health CenterMPCA
Routine HIV screening in primary care settings can help identify undiagnosed cases of HIV infection earlier. Late HIV testing leads to poorer health outcomes compared to earlier diagnosis. The CDC now recommends opt-out routine HIV screening for patients ages 13-64 in primary care. A model developed by health centers successfully integrated routine HIV screening and achieved high testing rates, identifying new HIV cases and linking patients to care.
- A survey of 91 GP's in Jersey had a response rate of 45%, with most respondents being male, over 41 years old, and having been in practice for over 12 years.
- The majority of GP's occasionally or sometimes discuss chiropractic care with patients and over 90% have referred a patient to a chiropractor, with over 25% doing so frequently.
- Over 70% of GP's use complementary and alternative medicine (CAM) in their practice, with physiotherapy being the most commonly used therapy.
- Responses were mixed on making chiropractic available within the public health system and on chiropractor's ability to diagnose non-musculoskeletal disorders, but most GP's
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
- A survey of 492 caregivers of adults with autism spectrum disorder was conducted to assess needs.
- The majority of respondents were mothers (75.1%), married (58.3%), Caucasian (87%), and had at least some college education (47.7%).
- On average, those surveyed had children who were 25 years old, male (79.7%), and lived at home with parents (74.1%). Over 40% of children had an autism diagnosis and over 30% had an intellectual disability.
Non invasive prenatal testing training evaluationPHEScreening
The document summarizes the results of a survey evaluating training for NHS staff on non-invasive prenatal testing (NIPT). Over two days, 8 events were held across the UK that were attended by 449 and 418 staff, respectively. Surveys found that after the training, participants reported higher levels of knowledge about genetic conditions like Down syndrome as well as increased confidence in discussing NIPT and test results with patients. Attendees found hearing personal experiences from parents of affected children and learning about support organizations to be particularly helpful. While the training was overall positively received, some comments noted a need for future refresher sessions and more information on implementation details.
Spina Bifida Association of Kentucky research presentation- Kristen RayKristen Ray
Healthcare providers are still not adequately informing expectant mothers about spina bifida when delivering the initial diagnosis. A survey of 65 expectant or new mothers found that providers often overestimate the severity of prognosis and do not provide sufficient information or referrals to support organizations. As a result, mothers feel unprepared to explain the diagnosis or make treatment decisions. They rely heavily on their own research and connecting with support groups. The study implications are that healthcare provider education and legislation could help ensure mothers receive up-to-date, accurate information to make fully informed choices.
Routine HIV Testing in the Community Health CenterMPCA
Routine HIV screening in primary care settings can help identify undiagnosed cases of HIV infection earlier. Late HIV testing leads to poorer health outcomes compared to earlier diagnosis. The CDC now recommends opt-out routine HIV screening for patients ages 13-64 in primary care. A model developed by health centers successfully integrated routine HIV screening and achieved high testing rates, identifying new HIV cases and linking patients to care.
- A survey of 91 GP's in Jersey had a response rate of 45%, with most respondents being male, over 41 years old, and having been in practice for over 12 years.
- The majority of GP's occasionally or sometimes discuss chiropractic care with patients and over 90% have referred a patient to a chiropractor, with over 25% doing so frequently.
- Over 70% of GP's use complementary and alternative medicine (CAM) in their practice, with physiotherapy being the most commonly used therapy.
- Responses were mixed on making chiropractic available within the public health system and on chiropractor's ability to diagnose non-musculoskeletal disorders, but most GP's
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
- A survey of 492 caregivers of adults with autism spectrum disorder was conducted to assess needs.
- The majority of respondents were mothers (75.1%), married (58.3%), Caucasian (87%), and had at least some college education (47.7%).
- On average, those surveyed had children who were 25 years old, male (79.7%), and lived at home with parents (74.1%). Over 40% of children had an autism diagnosis and over 30% had an intellectual disability.
Non invasive prenatal testing training evaluationPHEScreening
The document summarizes the results of a survey evaluating training for NHS staff on non-invasive prenatal testing (NIPT). Over two days, 8 events were held across the UK that were attended by 449 and 418 staff, respectively. Surveys found that after the training, participants reported higher levels of knowledge about genetic conditions like Down syndrome as well as increased confidence in discussing NIPT and test results with patients. Attendees found hearing personal experiences from parents of affected children and learning about support organizations to be particularly helpful. While the training was overall positively received, some comments noted a need for future refresher sessions and more information on implementation details.
The document discusses using an integrated data-driven approach to tackle chronic diseases. It summarizes that chronic diseases are becoming the norm, with over half of those over 45 having multi-morbidity. A paradigm shift is needed from reactive to proactive care. Clalit Health Services in Israel provides an example of an integrated system with universal coverage and strong data infrastructure. Case studies show how Clalit uses data to develop policies and programs around readmissions reduction, predictive prevention, reducing disparities, and proactive care for complex patients. Key requisites for success include data sharing and analytic capacity.
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.
The document discusses using HIV program data to evaluate gaps and disparities in linkage to care. It provides examples of how Louisiana measures linkage, retention, and viral suppression, and presents continuum of care data for the state overall and by region, race/ethnicity, and testing site. Linkage to care rates for newly diagnosed individuals are shown to be improving over time but still vary between regions and community-based organizations. The document encourages evaluating one's own agency's linkage data and identifying opportunities for the State HIV Program to provide more useful data support.
This document discusses adolescent use of preventive services based on USPSTF recommendations and an analysis of claims data from a large health plan. The analysis found that the rate of preventive care visits was low, averaging less than 0.3 visits per year. Adolescents had more frequent non-preventive visits, averaging 1.5 visits per year. Longitudinal data on over 40,000 continuously enrolled adolescents showed that guidelines for annual preventive visits were met less than 2% of the time. The document recommends developing better evidence for adolescent clinical preventive services, taking advantage of every medical encounter to provide preventive care, and using clinical systems to improve delivery rates.
The Kenya HIV Testing Services Guidelines 2015Cheryl Johnson
The document provides guidelines for HIV Testing Services in Kenya. It outlines the background of HIV testing in Kenya since the first diagnosis over 30 years ago. It notes that testing approaches have evolved from expensive laboratory tests requiring complex procedures to more simplified point-of-care testing kits, resulting in more Kenyans knowing their status. The guidelines aim to ensure quality services are provided to all clients accessing health facilities for HIV services. It emphasizes updated guidance on HIV Testing Services in line with current knowledge and the country's 90-90-90 strategy to identify people living with HIV so they can access treatment.
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
Presentation: Results of National Adherence PHEicapclinical
1. Rwanda's national HIV prevention, care, and treatment program has seen significant progress between 2004-2008, with HIV testing rates, ART coverage, and health facility participation all increasing substantially.
2. While barriers to PMTCT participation like fear of testing positive and partner disclosure remain challenges, programs have addressed issues like breastfeeding support and improving ANC attendance.
3. Clinical outcomes of ART have been positive, with high retention and adherence rates and significant CD4 count increases showing the effectiveness of treatment. Continued decentralization and integration of services is planned to further improve coverage.
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.
In Zimbabwe, only 57% of adult women and 34% of adult men have been tested for HIV and received their results. To address this testing gap, HIV self-testing is being introduced to complement current HIV testing strategies and help Zimbabwe achieve its goal of having 90% of people living with HIV know their status. A pilot study is underway to evaluate the acceptability, feasibility, accuracy, and ability to link people to care, treatment or prevention services of HIV self-testing using the OraQuick Advance oral test. Results are expected in June and will inform the larger UNITAID HIV STAR project starting that month aimed at further increasing HIV testing rates in Zimbabwe.
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.
Speakers discuss PrEP counseling, special situations, and other topics covered in training modules three and four. During this webinar, expert speakers review key highlights from modules three and four, and respond to questions from participants.
Part one: https://www.slideshare.net/jsi/prep-elearning-discussion-i
This document summarizes lessons learned from implementing HIV screening and treatment programs that could be applied to improving chlamydia screening and treatment efforts. Some key points discussed include the need to remove barriers to testing, improve linkage between testing and treatment, address disparities in screening and treatment rates, and work with private healthcare systems by understanding their unique contexts and incentives. Expanding recommendations and performance metrics could help drive improved chlamydia screening and treatment practices.
HIV self-testing and linkage in Africa. The document summarizes a presentation on HIV self-testing research in Africa. It discusses (1) the need for HIV self-testing in Africa due to low testing rates and knowledge of HIV status, (2) completed and ongoing studies of HIV self-testing in various African countries, and (3) priorities for future research including improving accuracy, evaluating new models for linkage to care, and assessing implementation in different populations and settings.
Where are we on HIV testing services - the achievements and the gapsCheryl Johnson
This document discusses achievements and gaps in HIV testing services globally. It finds that approximately 17 million people with HIV still do not know their status, and linkage to treatment after testing is suboptimal. While over 150 million people received HIV testing in 2014, nearly half of all people with HIV remain undiagnosed globally, with lower testing rates among men, adolescents, and key populations. The document calls for new approaches to testing like self-testing and lay providers, as well as improving quality, coverage, and focus on missing populations and areas with ongoing high risk.
Speakers discuss PrEP eligibility, management, and other topics covered in training modules one and two. During this webinar, expert speakers will review key highlights from the first two modules, share Nigeria specific guidance, and respond to questions from participants.
Part 2: https://www.slideshare.net/jsi/prep-elearning-discussion-2
The survey found that patients with rare diseases face long delays in diagnosis, seeing multiple doctors and receiving misdiagnoses. At the time of diagnosis, many patients report not receiving enough information or not understanding what they were told. Most respondents feel that general practitioners, pediatricians and even specialists lack adequate knowledge about rare diseases. Access to treatment, specialists and support is also limited, and the majority of patients incur significant personal costs for care of their rare disease, averaging $14,400 annually outside Quebec.
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%).
This document provides information on decreasing health disparities in perinatal outcomes through engaging patients in prenatal screening. It discusses current components of prenatal care according to ACOG and WHO, including screening for medical and socioeconomic factors. It also reviews data on racial disparities in pregnancy outcomes like preterm birth and low birth weight. Interventions discussed include CenteringPregnancy group prenatal care models and a protocol to prevent recurrent preterm birth. The document concludes with information on Zika virus infection risks and recommendations for evaluation and screening in pregnancy.
This document summarizes the results of surveys conducted by the Patient-Centered Outcomes Research Institute (PCORI) on patient, caregiver, and clinician views on comparative effectiveness research (CER) and engagement in research. Key findings include:
- Primary care clinicians reported low familiarity with CER but saw it as valuable. CER use in clinical decisions was also relatively low.
- Patients, caregivers, and clinicians believe that engagement in research can improve the value and relevance of studies. Many expressed interest in direct engagement.
- Common barriers to engagement included lack of time and concerns about privacy for patients and lack of time and payment for clinicians. Facilitators included helping others and learning for patients and
The document discusses using an integrated data-driven approach to tackle chronic diseases. It summarizes that chronic diseases are becoming the norm, with over half of those over 45 having multi-morbidity. A paradigm shift is needed from reactive to proactive care. Clalit Health Services in Israel provides an example of an integrated system with universal coverage and strong data infrastructure. Case studies show how Clalit uses data to develop policies and programs around readmissions reduction, predictive prevention, reducing disparities, and proactive care for complex patients. Key requisites for success include data sharing and analytic capacity.
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.
The document discusses using HIV program data to evaluate gaps and disparities in linkage to care. It provides examples of how Louisiana measures linkage, retention, and viral suppression, and presents continuum of care data for the state overall and by region, race/ethnicity, and testing site. Linkage to care rates for newly diagnosed individuals are shown to be improving over time but still vary between regions and community-based organizations. The document encourages evaluating one's own agency's linkage data and identifying opportunities for the State HIV Program to provide more useful data support.
This document discusses adolescent use of preventive services based on USPSTF recommendations and an analysis of claims data from a large health plan. The analysis found that the rate of preventive care visits was low, averaging less than 0.3 visits per year. Adolescents had more frequent non-preventive visits, averaging 1.5 visits per year. Longitudinal data on over 40,000 continuously enrolled adolescents showed that guidelines for annual preventive visits were met less than 2% of the time. The document recommends developing better evidence for adolescent clinical preventive services, taking advantage of every medical encounter to provide preventive care, and using clinical systems to improve delivery rates.
The Kenya HIV Testing Services Guidelines 2015Cheryl Johnson
The document provides guidelines for HIV Testing Services in Kenya. It outlines the background of HIV testing in Kenya since the first diagnosis over 30 years ago. It notes that testing approaches have evolved from expensive laboratory tests requiring complex procedures to more simplified point-of-care testing kits, resulting in more Kenyans knowing their status. The guidelines aim to ensure quality services are provided to all clients accessing health facilities for HIV services. It emphasizes updated guidance on HIV Testing Services in line with current knowledge and the country's 90-90-90 strategy to identify people living with HIV so they can access treatment.
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
Presentation: Results of National Adherence PHEicapclinical
1. Rwanda's national HIV prevention, care, and treatment program has seen significant progress between 2004-2008, with HIV testing rates, ART coverage, and health facility participation all increasing substantially.
2. While barriers to PMTCT participation like fear of testing positive and partner disclosure remain challenges, programs have addressed issues like breastfeeding support and improving ANC attendance.
3. Clinical outcomes of ART have been positive, with high retention and adherence rates and significant CD4 count increases showing the effectiveness of treatment. Continued decentralization and integration of services is planned to further improve coverage.
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.
In Zimbabwe, only 57% of adult women and 34% of adult men have been tested for HIV and received their results. To address this testing gap, HIV self-testing is being introduced to complement current HIV testing strategies and help Zimbabwe achieve its goal of having 90% of people living with HIV know their status. A pilot study is underway to evaluate the acceptability, feasibility, accuracy, and ability to link people to care, treatment or prevention services of HIV self-testing using the OraQuick Advance oral test. Results are expected in June and will inform the larger UNITAID HIV STAR project starting that month aimed at further increasing HIV testing rates in Zimbabwe.
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.
Speakers discuss PrEP counseling, special situations, and other topics covered in training modules three and four. During this webinar, expert speakers review key highlights from modules three and four, and respond to questions from participants.
Part one: https://www.slideshare.net/jsi/prep-elearning-discussion-i
This document summarizes lessons learned from implementing HIV screening and treatment programs that could be applied to improving chlamydia screening and treatment efforts. Some key points discussed include the need to remove barriers to testing, improve linkage between testing and treatment, address disparities in screening and treatment rates, and work with private healthcare systems by understanding their unique contexts and incentives. Expanding recommendations and performance metrics could help drive improved chlamydia screening and treatment practices.
HIV self-testing and linkage in Africa. The document summarizes a presentation on HIV self-testing research in Africa. It discusses (1) the need for HIV self-testing in Africa due to low testing rates and knowledge of HIV status, (2) completed and ongoing studies of HIV self-testing in various African countries, and (3) priorities for future research including improving accuracy, evaluating new models for linkage to care, and assessing implementation in different populations and settings.
Where are we on HIV testing services - the achievements and the gapsCheryl Johnson
This document discusses achievements and gaps in HIV testing services globally. It finds that approximately 17 million people with HIV still do not know their status, and linkage to treatment after testing is suboptimal. While over 150 million people received HIV testing in 2014, nearly half of all people with HIV remain undiagnosed globally, with lower testing rates among men, adolescents, and key populations. The document calls for new approaches to testing like self-testing and lay providers, as well as improving quality, coverage, and focus on missing populations and areas with ongoing high risk.
Speakers discuss PrEP eligibility, management, and other topics covered in training modules one and two. During this webinar, expert speakers will review key highlights from the first two modules, share Nigeria specific guidance, and respond to questions from participants.
Part 2: https://www.slideshare.net/jsi/prep-elearning-discussion-2
The survey found that patients with rare diseases face long delays in diagnosis, seeing multiple doctors and receiving misdiagnoses. At the time of diagnosis, many patients report not receiving enough information or not understanding what they were told. Most respondents feel that general practitioners, pediatricians and even specialists lack adequate knowledge about rare diseases. Access to treatment, specialists and support is also limited, and the majority of patients incur significant personal costs for care of their rare disease, averaging $14,400 annually outside Quebec.
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%).
This document provides information on decreasing health disparities in perinatal outcomes through engaging patients in prenatal screening. It discusses current components of prenatal care according to ACOG and WHO, including screening for medical and socioeconomic factors. It also reviews data on racial disparities in pregnancy outcomes like preterm birth and low birth weight. Interventions discussed include CenteringPregnancy group prenatal care models and a protocol to prevent recurrent preterm birth. The document concludes with information on Zika virus infection risks and recommendations for evaluation and screening in pregnancy.
This document summarizes the results of surveys conducted by the Patient-Centered Outcomes Research Institute (PCORI) on patient, caregiver, and clinician views on comparative effectiveness research (CER) and engagement in research. Key findings include:
- Primary care clinicians reported low familiarity with CER but saw it as valuable. CER use in clinical decisions was also relatively low.
- Patients, caregivers, and clinicians believe that engagement in research can improve the value and relevance of studies. Many expressed interest in direct engagement.
- Common barriers to engagement included lack of time and concerns about privacy for patients and lack of time and payment for clinicians. Facilitators included helping others and learning for patients and
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.
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.
How is the Coronavirus Impacting Healthcare Perceptions and Behaviors? (Wave ...Ed Bennett
The survey found that:
1) Most Americans do not know anyone with the coronavirus and are forming opinions based on indirect information.
2) Although few Americans report having the virus, 15% report being symptomatic but over half of them have not been tested.
3) Virtual care has become very popular during the pandemic, especially virtual mental health sessions, and most want these options to continue after the pandemic. However, many activities like social gatherings and travel will take time before most feel comfortable returning to normal.
This document summarizes information about stillbirths globally and in Australia. Some key points:
- There are over 2.6 million stillbirths globally each year, with 10 countries accounting for two-thirds of stillbirths in 2015.
- In Australia, the stillbirth rate after 28 weeks is 2.7/1000, ranked 16th internationally, and the reduction in stillbirth rate is only 1.4%, ranked 35th.
- Major risk factors for stillbirth include maternal obesity, age over 35, smoking, and decreased fetal movements. Guidelines have been introduced in Australia to address monitoring of fetal movements but their impact requires further evaluation.
- Many stillbirths remain unexplained, indicating gaps
2014 trends survey of child health care professionals on BreastfeedingGRIVEAS ASSOCIATES
A global online survey was conducted from September to December 2014 of 45,000 child healthcare professionals across 84 countries to identify trends in practices and guidelines related to various topics including breastfeeding. 667 healthcare experts responded, mostly general pediatricians (45.24%) working in general or children's hospitals or private practice. The document presents some results from the survey related to breastfeeding.
The Wessex Acute Frailty Audit found variability in how hospitals screen for and manage frailty. Screening for frailty sometimes occurred in emergency departments and acute medical units, but practices were inconsistent across sites. The audit aims to improve standards of care for frail patients in hospitals by identifying gaps and encouraging quality improvement. Further work is needed to drive consistency in frailty screening, management and care transitions.
2014 trends survey of Child health care professionals on Rare Diseases GRIVEAS ASSOCIATES
A global online survey was conducted from September to December 2014 with 45,000 child healthcare professionals across 84 countries to identify discrepancies in practices related to rare diseases. 667 healthcare experts responded, mostly general pediatricians (45.24%) working in general or children's hospitals. The document discusses the survey results regarding rare disease diagnosis and treatment.
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%).
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%).
This document discusses normal and abnormal modes of delivery. It begins by looking at worldwide and Lebanese cesarean section (C-section) rates, noting the WHO recommended rate of 15% and Lebanon's current rate of 44-45%. Several factors that may be contributing to high C-section rates are then examined, including financial incentives for doctors and hospitals, a lack of preparation for natural birth, and defensiveness due to malpractice fears. The short and long-term risks of C-sections for both mothers and babies are also reviewed. The document advocates for reducing unnecessary C-sections through measures such as implementing national guidelines and increasing access to natural birthing options and education.
Trouble Getting Pregnant? Get Second Opinion, Hear from an Experienced DoctorDimitri Popov
This document summarizes a webinar on fertility presented by Dr. Gary Levy, Chief Medical Officer of Fertility Cloud. It discusses that approximately 15% of US couples are affected by infertility, with common causes being ovulation disorders, fallopian tube issues, low ovarian reserve, and sperm-related factors. It outlines treatment options including lifestyle changes, oral or injectable medications, surgery, and in-vitro fertilization (IVF). IVF success rates decline with female age but it has higher success rates than other options for certain diagnoses. Less invasive options include medications which have cumulative pregnancy rates around 40-60% depending on the diagnosis. Fertility Cloud offers online consultations and personalized treatment plans using medications
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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
6. Powered by
Date Created: Friday, August 28,2015
65
Qualifying Responses
Complete Responses: 102
Expectant Mother Surveys
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 to expectant mothers 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!