Fellow Feature: Autism Spectrum Disorders – A Look into the Changing Prevalence Over Time with Susan E. Levy, MD, MPH

CPHI Senior Fellow discusses her research on autism spectrum disorders (ASD) and discusses the changing prevalence of ASD and its’ public health implications.

Susan E. Levy, MD, MPH Associate Professor of Pediatrics, Perelman School of Medicine

Susan E. Levy, MD, MPH
Associate Professor of Pediatrics, Perelman School of Medicine

Susan E. Levy is a pediatrician specializing in neurodevelopmental disabilities.  Her clinical and research interests center on the care of children with autism spectrum disorder (ASD).  Her research focuses on early identification, diagnosis, surveillance and treatment of children with ASD.  In particular, Dr. Levy focuses on the use of complementary and alternative medical treatments (CAM).

Dr. Levy is the founder and director of the Regional Autism Center (RAC) at Children’s Hospital of Philadelphia and serves as the co-principal investigator of PA-CADDRE (Pennsylvania Center for Autism and Developmental Disabilities Research and Epidemiology).  PA-CADDRE is a Center for Disease Control and Prevention-funded research program of The University of Pennsylvania School of Nursing and Children’s Hospital.  The goals of this program include ASD surveillance to determine prevalence, screening and early identification of ASD, and research on the etiology of ASD.

Autism Spectrum Disorders – A Look into the Changing Prevalence over Time

Q: What do we know about Autism Spectrum Disorder (ASD)  

Autism spectrum disorder (ASD) is characterized by a number of factors including:

  • Persistent deficits in social communication and social interaction across multiple contexts;
  • Restricted, repetitive patterns of behavior, interests, or activities;
  • Symptoms must be present in the early developmental period (but may not be recognized until later); and cause clinically significant impairment in social, occupational, or other important areas of functioning.

The term “spectrum” refers to the wide range of symptoms, skills, and levels of impairment or disability that children with ASD can have.

Q: How has our understanding of Autism changed over time?

Autism today is quite different compared to 15 years ago when I first became involved in the research.  This is in large part due to changing criteria with different versions of the DSM diagnostic manual, which paralleled some of the changes in the reported prevalence. The biggest change happened in 2013 when the criteria changed to combine social characteristics and communication into one category – which really makes sense because communication that is not for social purposes is not as meaningful. The changes in criteria over the years have made a difference in terms of how we look at the field – the criteria went from being very narrow to much broader.

Q: What would you tell parents who are concerned about the link between Autism and Vaccinations?

I feel that the evidence is firm that vaccinations, particularly the MMR, are not related as a cause of autism. I think that families deciding without full information to withhold vaccination are putting other children and individuals at very high risk.

Q: Where do you see the field of ASD going?  

Moving forward, hopefully we will look at the autism spectrum disorder as a category of disability with a better appreciation for the range in severity of symptoms and core difficulties, and the impact of co-occurring symptoms or disorders which have a large impact on quality of life. That’s an area in the clinic that we’re much more tuned into now because of some of the work we’ve done with our Autism Speaks grant, looking at the impact of   co-occurring conditions such as sleep disorders.

The other important area is the move over the last ten years to earlier identification, and with promising tools and strategies to identify kids at high risk for the diagnosis – such as kids with genetic disorders, premature infants, and siblings of kids with autism.  There’s a really a big push towards early identification.

Q: What research are you currently working on?

My largest project is with Jennifer Pinto-Martin on a CDC funded large multi-site case-control study of risk factors for ASD in children ages 2.5-5 with autism. It’s a case-control study with 3 groups: one group of kids who have ASD, one group of kids who have developmental delay (not autism), and the 3rd group is a population control. It’s a phenomenal study with a very large sample size in all groups. We are just starting to delve into the data, looking at the phenotypes and risk factors.

The other research program I am involved in is through Autism Speaks Autism Treatment Network (AS-ATN). Autism Speaks has funded 17 autism treatment networks across the country and in Canada and is committed to investigating and improving medical care for kids with ASD, as well as identifying difficulties.  We have enrolled families into the database, and have started to study and look at issues about treatment.

Q: How does your research translate into practice?

I’ve recently taken a course from CHOP’s Office of Clinical Quality Improvement and am a champion for my division in terms of looking at quality improvement and improving patient safety. So a big focus of my activities has been developing pathways and strategies for different providers or experts to evaluate children with ASD and other neurodevelopmental disorders and identify comorbid behaviors that could complicate treatment and progress. Thus, what we’ve learned from the CDC study in terms of risk factors and causes and profiles is going to help us in terms of management.

Career Path – From Clinician to Researcher and Public Health Advocate

Q: How did you get started in the field of development disabilities?

I became interested in developmental disabilities during my residency at St. Christopher’s Hospital for Children. As a 2nd and 3rd year resident, I realized I was very interested in taking care of kids with special healthcare needs and chronic neurological and developmental disorders.  My first year of fellowship focused on developmental disorders, and then I received more training at Kennedy-Krieger Institute at Hopkins. I came to CHOP and Penn in the early 80s to work in our general developmental disability evaluation unit.  Shortly after, I became interested in ADHD and along with a child psychiatrist (Dr. Tony Rostain); we founded the CHOP ADHD evaluation and treatment program.

Q: What provoked your work with ASD?

I became interested in ASD In the early 90s and received additional training. At that time I also started working with Jennifer Pinto-Martin. In the summer of 2001, we submitted a grant to the CDC and we were chosen as one of the centers to be a surveillance site and to develop a multi-site case-control study. For me, in a sense, the rest was history.

Q: Why did you decide to receive a Master of Public Health?

In the mid-2000s, I started thinking, ‘I’m doing public health research; I really need to get more training.’ In 2009 I started the MPH program, and then graduated in May 2013. The MPH has given me a great perspective in terms of appreciating the challenges and issues of kids with autism and special healthcare needs. As a clinician, my training in public health also helps me talk to people when they are concerned that ASD is an “epidemic – that there is not an increased risk of having it due to exposure as we would classically talk about an epidemic.”  Rather, we know that the increased numbers are related to the broadening criteria over time, heightened awareness about the diagnosis, and earlier diagnosis. So I started off as ‘just a clinician,’ and morphed into this researcher and public health advocate.

Q: How do you consider yourself a Public health Advocate? 

I’ve been active in the American Academy of Pediatrics, particularly the Council on Children with Disabilities.  I’ve been a contributor to the clinical reports in terms of diagnosis and treatment of kids with autism spectrum disorders; I was a co-author of the autism toolkit to help pediatricians, and using what I learned from my capstone on shared decision making, I’m going to co-author a clinical report for the American Academy on shared decision making for children with developmental disorders, bringing it full circle.

Don’t expect a “Disneyland effect”

Alison Buttenheim, PhD, MBA, Assistant Professor in the University of Pennsylvania School of Nursing, a Senior Fellow of the Leonard Davis Institute and the Penn Center for Public Health Initiatives, and Faculty Affiliate in the LDI Center for Health Initiatives and Behavioral Economics

Alison Buttenheim, PhD, MBA, Assistant Professor in the University of Pennsylvania School of Nursing, a Senior Fellow of the Leonard Davis Institute and the Penn Center for Public Health Initiatives, and Faculty Affiliate in the LDI Center for Health Initiatives and Behavioral Economics

Senior Fellow Alison Buttenheim recently published an article for the Leonard Davis Institute of Health Economics blog. Read it below!

“So how about that Disneyland measles outbreak?”  As a researcher who studies vaccine refusal, I’ve been asked this question a lot recently. More than 50 people have come down with measles after exposure at the iconic Southern California amusement park, and nationwide measles diagnoses exceeded 90 in the month of January alone. (For the record, that’s a lot of measles cases to see in one month in the US in recent years, although 2014 was also banner year for the virus.)

Last week a colleague posed a particularly compelling question: “Do you think we’ll see a ‘Disneyland effect’?” – meaning, could this widespread outbreak produce a backlash against vaccine refusal and thereby reduce rates of vaccine exemptions, “alternative” vaccine schedules, or opting out completely of recommended childhood immunizations.

Parents less likely to refuse vaccines now?

It’s reasonable to expect a Disneyland effect. After all, there was strong evidence of a “Katie Couric effect” on colon cancer screening rates after Ms. Couric underwent an on-air colonoscopy in 2000. Similarly, an “Angelina Jolie effect” on breast cancer screening rates for women with a family history followed Ms. Jolie’s disclosure of her double mastectomy in 2013.

Several features of the Disneyland measles outbreak are also conducive to moving the needle on parents’ beliefs and decisions about childhood immunization: First,  the outbreak has high salience: news stories have run in major print and broadcast outlets almost daily, and the internet and blogosphere are packed with posts from all perspectives. If vaccine hesitancy and worries about the measles virus were just lurking in the back of your brain last month, they are top-of-mind now. The universality of Disneyland may make parents feel more vulnerable in a “this could happen to us” way—it’s no longer possible to imagine that measles outbreaks or high rates of vaccine refusal are happening in another state or another school community.

Second, the Disneyland outbreak could shift both the social norms around vaccine refusal and the framing of the importance of childhood immunization.  In recent years, people arguing against the safety, efficacy, and necessity of vaccines have created a powerful social norm that validates vaccine refusal and privileges claims about vaccine-related harms. In the Disneyland outbreak coverage, we are seeing more stories framed from the perspective of the potential harms of measles: for example, the stress and financial burden associated with quarantining an exposed infant; or the request from a father of an immune-compromised child to keep unvaccinated children out of his son’s school. This could in theory produce more “something must be done about this” sentiment that could then lead, for example, to stricter state vaccine exemption laws.

Third, this recent outbreak very simply plays on inherent present bias—our tendency as humans to heavily discount future costs and benefits of a decision or behavior while overweighting current costs and benefits. For most parents, the benefits of vaccinating are intangible (we take an action so that something doesn’t happen), probabilistic (vaccines are not 100% effective, and the chances of being exposed to measles are small), and in the future.  It’s reasonable to imagine why parents with any level of concern about vaccines might opt out. The Disneyland outbreak shifts this calculus by making the cost of not vaccinating very immediate and tangible, and might therefore lead to decreased refusal.

A prediction (and I hope I’m wrong)

Despite these prior effects and reasonable assumptions, I hereby predict no such Disneyland effect this time. While I would be delighted to be proven wrong, I think there are at least three reasons why we won’t see a lasting impact of the outbreak on exemption or refusal rates.

First, our attention span is limited. While the Disneyland outbreak is getting a lot of coverage now, this will likely last for only a few more news cycles. (Caveat to this point: If someone were to die of measles from this outbreak – which I decidedly hope does not happen – the salience and duration of the outbreak in the news cycle would both increase.)

Second, the parents whose vaccine beliefs and behaviors are most likely to be affected by this outbreak are the slightly hesitant and the undecided. We are not likely to see much shift in the more adamant, hard-core anti-vaccine folks.  In one anecdote from a news article on the outbreak, a non-vaccinating parent in Los Angeles reported that “she hadn’t even been aware of the Disneyland outbreak because she refused on principle to follow the mainstream news media. But she was in no doubt, even without reading the coverage, that ‘they have skewed the facts in favor of trying to sell people more pharmaceuticals’”.  The same facts about the outbreak that might convince a moderately hesitant parent to vaccinate will only reinforce previously-held beliefs in a strongly anti-vaccine parent.

In a terrific recent paper, Brendan Nyhan and colleagues demonstrated this effect in a study in which parents were exposed to information about the dangers of vaccine-preventable diseases and the lack of evidence for an MMR-autism link. This information actually reduced intention to vaccinate among parents with previously unfavorable views of vaccines. Similarly, images of sick children with vaccine-preventable diseases increased beliefs in an MMR-autism link. So, the people whose beliefs we would most want to change in response to the Disneyland outbreak are the least likely to be persuaded. Unfortunately, these beliefs and the vaccine-refusing behaviors that accompany them tend to cluster socially and spatially–and it is this very clustering that leads to outbreak “hot spots” where herd immunity is most compromised.

Finally, I am skeptical about a Disneyland effect because I have spent a lot of time looking for a similar effect in other recent, highly-publicized outbreaks (including a 2008 measles outbreak in San Diego, California) and have failed to find one. That doesn’t mean it won’t happen this time. I will continue to look for shifts in social norms, beliefs, and behaviors in response to vaccine-preventable disease outbreaks, and work towards developing interventions that reduce vaccine hesitancy and boost herd immunity in the population.  Let’s not let any more trips to Disneyland be ruined by Mickey Mouse science.

Why a fake article titled “Cuckoo for Cocoa Puffs?” was accepted by 17 medical journals

Coco Puffs

A Harvard scientist wanted to see exactly how easy it is to get medical research published. In some cases, $500 is pretty much all it takes.

Read through this interesting article by Elizabeth Segran about navigating through the process of medical research publication.

http://www.fastcompany.com/3041493/body-week/why-a-fake-article-cuckoo-for-cocoa-puffs-was-accepted-by-17-medical-journals

 

 

Public Health in Philadelphia and Beyond: An Interview with Ana V. Diez Roux, Dean of the Drexel School of Public Health

Last week, The Philadelphia Inquirer conducted an interview with the Drexel School of Public Health’s Dean Ana Diez Roux, MD, PhD, MPH. Read the interview below!

Ana V. Diez Roux, MD, PhD, MPH a physician and epidemiology, became Dean of the Drexel School of Public Health in early 2014

Ana V. Diez Roux, MD, PhD, MPH a physician and epidemiology, became Dean of the Drexel School of Public Health in early 2014

Written by: Janet Golden, PhD, Professor of history, Rutgers University-Camden

Wednesday, January 7, 2015

Ana V. Diez Roux, M.D., Ph.D., M.P.H. a physician and epidemiologist, became Dean of the Drexel School of Public Health in early 2014.  Her biographical details and information about her scholarship can be found here.

I interviewed her about her vision for the Drexel School of Public Health, her views of the public health needs and opportunities she has found in Philadelphia, her conception of local and global opportunities for the School of Public Health, and her goals for the education of students in the Drexel School of Public Health.  Listen to the full interview here. What follows is an edited and excerpted version of that interview.

What excited you about coming to Drexel and to Philadelphia?

I was very excited about the mission of the Drexel School of Public Health. It was founded on the idea of health as a human right, implicitly recognizing all of the social and economic circumstances influencing health.  The School of Public Health has lots of connections to the larger world of public health practice and to public health communities in Philadelphia, which is interesting to me because of the work that I’ve done about how neighborhoods and communities affect health. The possibilities for contributing to an understanding of the effect that cities have on health was very interesting to me and also the fact that Drexel has a history of cooperative learning and practice-informed learning, which I think is very relevant to public health.

More coverage

Audio: An Interview with Anna Diez Roux

As you look to deepen the ties that already exist between the School of Public Health and the community where do you see the School of Public Health dealing with some of the problems of deep poverty and other systemic issues in Philadelphia? Where do can the school play a role?

I think the School of Public Health can play two important roles. One is that although we know that poverty is linked to health, (and this has been a staple of public health since its origins) we don’t have a lot of evidence about the best way to tackle this issue.  What kinds of policies work and what are their health effects?  Contributing to the evidence base through rigorous research on a variety of policies that may not be thought to be related to public health—early childhood education or neighborhood politics—and being able to quantify and study their health impact is something I think schools of public health need to do in order to provide stronger evidence and justification for various policies.  Research has to be done in partnership with policy makers and communities.  Another role has to do with practice and implementation—how do we make changes? How do we work collaboratively with communities and policy makers to make things happen once we know what works?

We have many kinds of health problems in Philadelphia. We have infectious diseases and with our aging and poor population, we have chronic diseases, related to poverty, food intake, lack of access to care, and pollution.  How do you see the Drexel School of Public Health addressing these problems?

That is the big challenge of public health in many countries and in many cities.  An Institute of Medicine report from last year that I was involved with, found that the United States has health disadvantages with respect to many wealthy countries in Europe.  The US does very poorly with things like teenage pregnancy, sexually transmitted diseases, and also obesity, diabetes, and many chronic diseases. So we need to think about common underlying causes or systems that are generating these things and figure out how to grapple with them.  They may have to do fundamental causes like the social determinants of health, and so they are related to both infectious diseases and chronic diseases. Sometimes there are similar pathways and sometimes there are different pathways [to chronic and infectious diseases] so understanding the systemic nature of these coexisting problems is really important. Next, we need to look at what can be done for a particular condition. There are strategies for infectious diseases. Increasing vaccination rates is something that we have to do, regardless of whether we are able to identify the more general causes. For other conditions there are other strategies. The city of Philadelphia is trying to improve the environment so that people can be more physically active, can be eating more healthfully, and interacting socially with other people, which have lots of health benefits. We need to address systemic problems but that should not stop you from taking concrete actions that we already know work.

How is the Drexel School of Public Health engaging in world of global health?

We have a number of activities ongoing with a number of organizations.  In Africa there is a big effort to provide access to safe water and there is work going on in Asia and Israel as well. Going forward I think there are three things important to the school. First is the idea of understanding health in cities; next are issues of health and social justice and eliminating health disparities, and third is generating evidence relevant to policy and practice. I see all those things as having a global health projection, particularly the idea of health in cities globally.

Many cities have similar problems so expanding our global urban health presence is a direction in which we will be moving. Another is being part of a network of schools of public health or public-health-oriented institutions grappling with improving health in cities.  We are dealing with emerging infectious diseases that, if they don’t originate in cities end up in cities. We have problems of chronic diseases that have to do with structural factors that condition and in many ways constrain how people live their lives.

One of the big issues in cities is the very big inequality in health, spatially by social class, and by race and ethnicity, and by immigration status. To improve health in cities we absolutely have to grapple with those inequalities.

I want to mention that so many places are doing global health and it is important to think about how we partner with other countries and groups in other countries. We have to make sure those partnerships are equitable and mutually beneficial.

Source: The Philadelphia Inquirer; http://www.philly.com/philly/blogs/public_health/Public-Health-in-Philadelphia-and-Beyond-An-Interview-with-Ana-V-Diez-Roux-Dean-of-the-Drexel-School-of-Public-Health.html

Revisiting The Opioid Epidemic and its Unintentional Consequences

drug overdose death rates in US

Source: Centers for Disease Control and Prevention

PHILADELPHIA—Americans represent 4.6% of the world’s population, yet we consume more than 97% of all the hydrocodone produced worldwide. In 2012, the CDC reported health care providers wrote 259 million prescriptions for painkillers, which is enough for every American adult to have a bottle of pills.

The Center for Public Health Initiatives dedicated a week in November to focus on the opioid epidemic and how to reduce the level of prescribing these drugs. In her talk, “From the Streets to the ER,” Dr. Jeanmarie Perrone from the University of Pennsylvania’s Department of Emergency Medicine proposed that health care providers should begin to focus on patient education, “It takes 30 seconds to prescribe and 30 minutes to educate.” So which one is a more viable option?

The fine line between compassionate pain management and encouraging addiction is often hard to distinguish when prescribing opioid medications. Larger patient loads and shorter doctor-patient visits (average, 7-9 minutes) may encourage physicians to prescribe chronic non-cancer patients opioids instead of spending time to educate them on alternative options.

Is the solution to the opioid epidemic as simple as a half hour of education? A team approach to patient education has consistently worked well. Dr. Perrone and her colleagues conducted a study involving two urban emergency departments in Philadelphia and investigated the use of a multidisciplinary team approach to decrease the amount of opioid packs dispensed at discharge. The interventions included educating a multidisciplinary team of nurses, residents, nurse practitioners, and attending physicians. The number of opioids dispensed at discharge for individuals who were at risk for opioid dependence decreased significantly from 21.8% to 13.9% in the primary ER investigated.

Studies involving a multidisciplinary approach and state regulations implementing prescription drug monitoring programs led to a successful reduction in rates of opioid abuse.

State Successes After Implementing Prescription Drug Monitoring Programs

Sources: NY, TN: DMP Center of Excellence at Brandeis University, 2014. FL: Vital Signs Morbidity and Mortality Weekly Report, July 1, 2014.

Sources: NY, TN: DMP Center of Excellence at Brandeis University, 2014. FL: Vital Signs Morbidity and Mortality Weekly Report, July 1, 2014.

Unintentional Consequences

With strong policies that have made it more difficult to obtain prescription pills, some argue that these regulations have only shifted the type of opioids being used.

Emerging research shows that the increased opioid regulations may be linked to the increase in heroin use. Over the past three years, opioid related fatalities in New York City have leveled off, while deaths involving heroin use have increased by 44%.

unintentional overdose deaths

As opioid regulations increase across the nation, public health practitioners should pay close attention to an unintended rise in heroin use, particularly in areas where heroin is readily accessible.

Written by: Amy Rajan, RN, MSN/MPH Candidate, Class of 2016

Penn’s Dominating MPH Presence at APHA’s 142nd Annual Meeting & Expo

The University of Pennsylvania’s Master of Public Health Program made a strong showing at this year’s APHA meeting in New Orleans. This year’s conference theme was “Healthography: How Where You Live Affects Your Health and Well-Being.” Six alumni, four current students, and many faculty presented their work. The Penn MPH booth at the Public Health Expo was also very popular!APHA_2014_Annual_Meeting


Alumni:

Noel Harbist, MD, MPH

Primary care pediatricians identify barriers to recommended care

With the establishment of the Children’s Health Insurance Program Reauthorization Act (CHIPRA) Pediatric Quality Measures Program (PQMP), there is increased attention to the measurement and delivery of recommended care. Primary care pediatricians identify time, payment issues, and family issues to be significant barriers to delivery of recommended care.  Enhancements in QI processes, such as the design of electronic medical records, may improve the documentation of care, but may not alleviate the obstacles pediatricians identified in the delivery of recommended care. QI strategies for delivery of recommended care should consider pediatricians’ perspectives and the possible role public health initiatives.

Jordan Price, MPH

Barriers and facilitators influencing inconsistent condom use in young adults in Philadelphia

Rates of chlamydia and gonorrhea in Philadelphia are three to four times higher the national rates, respectively, and clients served by Planned Parenthood of Southeastern Pennsylvania (PPSP) have the highest rates in the city. Though it is well known that condoms are one of the most effective ways to prevent sexually transmitted infections (STIs), reasons behind inconsistent condom use are not fully understood. This study aims to identify the barriers and facilitators that influence

Jane Seymour, MPH

Literacy and fertility: Lifecourse evidence from the National Longitudinal Survey of Youth (NLSY)

Literacy is associated with many health outcomes among US adults, but little is known about its relationship with reproductive outcomes. This study assessed the link between literacy and fertility outcomes for US women.

Elizabeth Stelson, LSW, MSW, MPH

Reentry and reunification: Investigating the influence of children in the reentry experience of mothers released from short-term jail stay

The incarceration rate of women has increased 800% in the last 30 years, and 80% of incarcerated women are mothers of children (<18 years of age). Research on community reentry for mothers released from prison has shed light on how social determinates of health—such as social support, housing, and employment—relate to successful reunification with children. Successful prison reentry has been linked to improved health and social outcomes for both the mother and child. However, little is known about maternal reentry following release from jail, which is markedly different from prison, characterized by a shorter stay, uncertainty awaiting sentence, and access to fewer resources.

Resources for reentry: Investigating the biopsychosocial needs of mothers of young children released from jail

The vast majority of incarcerated women (80%) are mothers of children (<18 years). Research on community reentry for mothers released from prison has identified significant barriers to health care services (HCS) and unmet social health needs. However, little is known about the reentry barriers experienced by mothers released from jail, characterized by shorter stays and fewer HCS compared to prison.

Samantha Gross, JD, MPH

Medical legal partnership education: A survey of existing programs and recommendations for national curriculum

Medical-Legal Partnership (MLP) is an integrative and collaborative model that brings legal services directly into the health care setting to assist patients in maximizing health and social benefits.  Legal remedies can resolve many socioeconomic and environmental issues common to vulnerable and underserved populations.  Also MLPs vary in structure, three components are central to the model: (1) providing direct legal assistance, (2) transforming health and legal institutions, and (3) achieving policy-level change.  These partnerships are uniquely suited to address necessary social and legal needs in an accessible clinical setting. This research addresses the current MLP educational environment by conducting interviews with MLP educators throughout the country to better understand how health care and law students are prepared to work in this unique, collaborative setting and the current challenges to providing MLP education.

Kaitlyn Meirs, MPH

Investigatory research on the distribution and accessibility of physicians with environmental expertise in the Gulf of Mexico

Disparate access to health care has been well documented, however, little is known about access to providers trained in assessment of environmental exposure and related care. Industries depend on occupational clinics that employ physicians with environmental expertise to provide exposure care to industry employees. Physicians employed in this setting are generally unavailable to see patients other than those employed by contracted companies due to potential conflict of interest. Our project evolved from concerns related to a lack of access to physicians with environmental expertise in the Gulf of Mexico and is supported through the Community Outreach and Engagement Core (COEC) of the Center of Excellence in Environmental Toxicology (CEET) supported by NIEHS (P30ES013508).

Current students:

Natalie Stollon, MSW, MPH(c)

Transitioning from pediatric to adult services: A public health approach

Due to advances in neonatal and pediatric care, patients with chronic illnesses and disabilities are surviving well into adult life and are faced with needing to navigate the challenging transition to adult care. As with all medical transitions, there is valid concern that patient morbidity and mortality are adversely affected during this time. We carried out a pilot Primary Care Transition Program, a randomized controlled trial that evaluated whether participation in three different transition interventions increased transition readiness, successful transition to an adult care provider and patient, caregiver and provider satisfaction and systematically evaluated and implemented transition plans for CHOP patients and families as they transitioned from pediatric to adult care. At this point the RCT is ongoing. 6-month and 10-month post-intervention surveys are being collected. We have 33 young adults and 10 caregivers enrolled in the study. Analysis will be complete by May 2014.

Caren Steinway, MSW(c), MPH(c)

Transitioning from pediatric to adult services: A public health approach

Due to advances in neonatal and pediatric care, patients with chronic illnesses and disabilities are surviving well into adult life and are faced with needing to navigate the challenging transition to adult care. As with all medical transitions, there is valid concern that patient morbidity and mortality are adversely affected during this time. We carried out a pilot Primary Care Transition Program, a randomized controlled trial that evaluated whether participation in three different transition interventions increased transition readiness, successful transition to an adult care provider and patient, caregiver and provider satisfaction and systematically evaluated and implemented transition plans for CHOP patients and families as they transitioned from pediatric to adult care. At this point the RCT is ongoing. 6-month and 10-month post-intervention surveys are being collected. We have 33 young adults and 10 caregivers enrolled in the study. Analysis will be complete by May 2014.

Bridget Keogh, BS

Building a trauma-informed care peer workforce

This session provides a description of the implementation of a statewide, four year trauma-informed mental health (MH) and co-occurring disorders (COD) care systems change initiative. The goals of the systems change are to: 1) prepare outpatient mental health and co-occurring system providers and specialists to build a system of care based on a consumer-defined set of principles and values that integrate lived trauma experiences into MH and COD recovery services; 2) provide universal trauma screening and assessment to all individuals who enter the recovery system; and 3) to build a workforce of trauma peer specialists to provide trauma-informed recovery services across the service and provider network. The primary focus of this initiative is to change the culture of the treatment delivery system; incorporating a trauma-informed recovery philosophy and activities into all recovery services. This session will provide a description of the process of implementing universal screening and assessment and an analysis of the data of over 2,000 individuals who were screened for trauma experience at the onset of entering the recovery system over a three year period and on the design, implementation, and outcomes of trauma peer-delivered recovery services.

Ebony Easley

Psychosocial implications of uncertainty in genomic testing of children with autism

Chromosomal Microarray Analysis (CMA) is a genome-wide technology that enables identification of genomic alterations, many of which are of uncertain clinical significance. Clinical guidelines recommend CMA testing for children with Autism Spectrum Disorder (ASD), which occurs in approximately 1% of the US population. Increasingly, families are offered CMA testing, and many receive complex and uncertain results.  In this study we examined the psychosocial implications for parents of children with ASD who received uncertain results from CMA testing. We collected data using in-depth interviews and self-report questionnaires. We used purposive sampling to recruit 57 parents, including three subgroups with positive, negative and uncertain results. This presentation focuses on the uncertain subgroup (n=20).

Written by: Allison Golinkoff, MPH Candidate 2016