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Mon, Oct 7 11:01am · #ResearchRecap – Good Health Behaviors in Adults with CHD in HLHS

HLHS blog - health behaviors

 

Good health behaviors are defined as “actions that individuals take to maintain or enhance their health and reduce health risks” and are especially important for individuals with congenital heart disease (CHD), including hypoplastic left heart syndrome (HLHS).  But how likely are adults with CHD to actually maintain a heart-healthy lifestyle?  This week’s #ResearchRecap reviews an important and insightful study that aimed to answer that question.  (4 minute read)


Health behaviors reported by adults with congenital heart disease across 15 countries.
Holbein, et al., September 17, 2019
European Journal of Preventive Cardiology https://journals.sagepub.com/doi/full/10.1177/2047487319876231

 

Little is known about the details of important health behaviors in adults with CHD, and even less is known about these behaviors in countries around the world. Researchers in Belgium coordinated an extensive international study to start answering these questions. The study enrolled 4,028 patients in 15 countries on five continents: 2 in North America, 1 in South America, 8 in Europe, 3 in Asia, and Australia. The average age of participants was 32, 53% were women, and half had at least moderate CHD.

Participants completed several surveys and had their medical records reviewed. All data was collected from April 2013-March 2015. Patients were eligible to enroll if they were over 18, had been diagnosed with CHD before adolescence, and had not undergone a heart transplant. The study had three aims:

  1. Describe health behaviors in a large international sample of adults with CHD.
  2. Compare health behaviors in this sample across countries.
  3. Identify patient characteristic associated with health behaviors.

 

Description of Health Behaviors

Seven health behaviors were studied: binge drinking, cigarette smoking, recreational drug use, visiting the dentist at least once a year, brushing their teeth twice a day, flossing once a day, and regular physical activity. Patients were also asked to report their level of “functional status” using the New York Heart Association (NYHA) classes of heart failure ranging from Class I (no limitation of physical activity) to Class IV (unable to carry on physical activity without discomfort).

hb chart

The authors note that these findings are in line with previous research which suggests that “the health behaviors of adults with CHD may largely follow trends of the general population, with the presence of CHD having only a subtle impact.” Yet, they also point out that good health behaviors are especially important for adults with CHD given that “they are at higher risk than the general population for cardiovascular events.”

 

Comparison across Countries

Consistent with general population trends, adults with CHD reported higher rates of smoking and binge drinking in Australia and several Western and Northern Europe countries. Recreational drug use (e.g., cannabis, ‘ecstasy’, ‘speed’, ‘mushrooms’, cocaine) was highest in North and South America, while patients from India and Taiwan reported the lowest levels of substance use.

Western and Northern European countries had the highest rates of annual dental visits (84%), while India was the lowest (28%). Brushing and flossing varied widely across all countries; 64% of patients in the United States reported brushing twice a day and 33% reported flossing daily. For physical activity, the US and Asia reported the lowest rates of regular physical activity, while higher rates were seen in Western and Northern Europe.

It’s important to keep in mind that there are many reasons for differences in the rates of certain health behaviors across countries. The authors note that factors such as national level of development, cultural values, laws, and geographic barriers may result in patients being more or less likely to engage in certain behaviors. For example, personal use of cannabis is legal in several countries studied here, while other researchers have reported that most people in India don’t have access to basic dental care (Gambhir et al., 2013).

 

Individuals and Health Behaviors

For their third aim, the researchers correlated the seven health behaviors with demographics including age, sex, marital/cohabiting status, education level, defect complexity, and functional status. Patients who were younger, male, less educated, and had less complex CHDs were more likely to report binge drinking and smoking. Recreational drug use was more often reported by people who had worse functional status, were unemployed, and unmarried.

Remember: In studies like this, “correlation does not imply causation.” This means that we don’t know if being unemployed, unmarried, and having worse functional status causes someone to use recreational drugs, or if using drugs causes someone to have these characteristics. In this study, they were reported together more often, but there may be other causes that were not explored.

All three aspects of dental care were correlated with older age, higher education, and being female. Patients were less likely to report regular brushing and flossing if they had a worse functional status. This is especially concerning given that “CHD patients are at greater risk for cardiovascular complications including endocarditis (infection in the heart valves or lining of the interior surfaces of the heart)… and that dental problems are a leading cause of infective endocarditis.”

Participants in this study who reported regular physical activity were more often younger, male, employed/students, had higher education, less complex defects, and better functional status. The authors note that physicians have historically been reluctant to encourage physical activity in complex CHD patients. However, new research has shown that appropriate exercise and cardiac rehab can be beneficial for people with severe defects.

 

While many adults with CHD maintain a heart-healthy lifestyle, there are still areas for improvement that vary in specific areas across countries and individuals. This study provides important information for both medical providers and for the future development of programs to assess, educate, and improve access to good health behaviors for adults with CHD.

 


Meet other people talking about HLHS or CHD on Mayo Clinic Connect – an online community designed to help patients and families connect with each other.  Our community is a safe space to share experiences, ask questions, find answers, and exchange support.  The discussion groups and topic pages are moderated to ensure that all posts are respectful, and Mayo Clinic Connect never sells or shares posted information to third parties.  Here are some you might like to follow:


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. Our specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email us at HLHS@mayo.edu to learn more.

Mon, Oct 7 9:37am · This Year’s Agenda for Feel the Beat! in HLHS

HLHS hearts

 

We’re in the home stretch – only five more days until Feel the Beat 2019! Be sure to RSVP if you haven’t already.

The agenda for the day is below.  And for those of you who can’t make it in person, we’re excited to share that we’ll once again have a livestream of the panels on our Facebook page! You can watch our Facebook Live video during or after the event on our page.

 


 

HLHS blog - agenda

 

 


Meet other people talking about HLHS or CHD on Mayo Clinic Connect – an online community designed to help patients and families connect with each other.  Our community is a safe space to share experiences, ask questions, find answers, and exchange support.  The discussion groups and topic pages are moderated to ensure that all posts are respectful, and Mayo Clinic Connect never sells or shares posted information to third parties.  Here are some you might like to follow:


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. Our specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email us at HLHS@mayo.edu to learn more.

Mon, Sep 30 11:42am · Special Guests at Feel the Beat 2019! Part 2 in HLHS

family coor

The theme of this year’s Feel the Beat is “ELEVATE” – raising awareness and celebrating how research enhances the lives of individuals with HLHS! One area we’ll be raising awareness of and showing our appreciation for is the people who make research possible. One of our guest panels this year will feature patients and families from across the HLHS Consortium who participated in our Phase I stem cell delivery trial, and the Clinical Research Coordinators who have been a part of their journey! Our work wouldn’t be possible without the generosity, motivation, and hard work of these important people.

Make sure to RSVP here if you haven’t already!

 

The Pieper Family & Somya Shankar — Children’s Hospital of Philadelphia
pieper somya

The Pieper Family lives in central Pennsylvania. Their son Wyatt was diagnosed in utero with HLHS and born at CHOP where he successfully underwent the Norwood procedure. The Piepers returned to CHOP for Wyatt’s Stage II Glenn procedure, where the delivery of Wyatt’s autologous stem cells was performed in December 2018. The Piepers’ relationship with the HLHS Program has evolved over time. Upon diagnosis, the Piepers found resources online to help explain the defect, although they quickly moved on to studying research in scientific journals provided by the HLHS Program. Having the opportunity to participate in the Program’s Phase I autologous stem cell study was a key component of the Pieper family’s decision in where to receive care. Today, Wyatt loves to attend music class and play in pools. Katie and Rob enjoy reading, cooking, playing frisbee, and spending time outside.

 

Originally hailing from just outside of the nation’s capital, Somya graduated from the College of William & Mary in 2018 with a Bachelor’s degree in Chemistry. Since then, she has been working as a research coordinator at CHOP and will be applying to medical school this year! Her connection to HLHS comes through her work on the Umbilical Cord Blood Collection and Stem Cell Delivery studies. In her spare time, Somya loves to travel, listen to podcasts, and go on long walks with her dog. Somya truly enjoys getting to know the many families who participate in the studies at her site, and looks forward to meeting even more members of the HLHS community here at Feel the Beat 2019.

 

The Strand Family & Juanita Taylor — The Children’s Hospital at OU Medicine
Strand juanita

The Strand Family lives in central Iowa. Their son Charlie was diagnosed in utero with HLHS, and they learned after birth that he also has Aortic Stenosis and Mitral Atresia. Charlie was born at OU Children’s Hospital in Oklahoma City in July 2017. His cardiothoracic surgeon, Dr. Harold Burkhart, performed the Pulmonary Banding, Norwood, and Glenn open heart surgeries. During his Glenn surgery, Charlie became the eighth infant to receive autologous stem cells on the Phase I Clinical Trial. Charlie turned two this summer and is currently doing very well readying himself for the Fontan surgery. According to his parents, Charlie is ALL boy, has a wonderful, spunky personality, and is definitely a miracle.

 

Juanita Taylor is a Nurse Navigator for Oklahoma Children’s Heart Center. She has been a nurse navigator for four years and a member of the Heart Center for fifteen years. Juanita lives in Choctaw, OK right outside of Oklahoma City. When she isn’t passionately advocating for families with HLHS and other congenital heart conditions, she dedicates all her spare time to her own family and planning her wedding in October! Juanita has a new granddaughter and is blessed to have a seven-year-old grandson and 4-year-old granddaughter through her fiancé.

 

The Gutman Family & Karen Miller — Mayo Clinic
gutman karen

The Gutman Family lives in northern Ohio. Their son, Luke, was diagnosed in utero with HLHS and treated at Mayo Clinic, and was the second infant to receive the stem cell delivery. Jennifer works as a Service and Support Administrator to help coordinate services for people with developmental disabilities. She joined the organization after it helped Luke reach his milestones through in-home therapy sessions. Learning how to advocate for Luke’s needs led Jennifer to want to advocate for others born differently abled. Jennifer herself is a “rainbow baby” who was born after her older brother with HLHS passed away due to complications from his Norwood surgery. Jennifer’s hobbies include gardening, fishing, boating, and trying to keep up with their two little boys!

 

Karen has been a coordinator for the HLHS Program at Mayo Clinic since 2014. As a clinical research coordinator, Karen works with families who have a child diagnosed with HLHS and want to participate in the Program’s clinical trials. Some of her responsibilities include study recruitment, ensuring that participants understand and voluntarily consent to participate, and assisting families while they are here for their research visits. Karen lives with her family on her family’s dairy farm outside of Rochester. In her spare time, she loves to go antiquing, spend time in her garden, and travel.

 

Stay tuned next week for more details on #FTB2019!

 


Meet other people talking about HLHS or CHD on Mayo Clinic Connect – an online community designed to help patients and families connect with each other.  Our community is a safe space to share experiences, ask questions, find answers, and exchange support.  The discussion groups and topic pages are moderated to ensure that all posts are respectful, and Mayo Clinic Connect never sells or shares posted information to third parties.  Here are some you might like to follow:


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. Our specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email us at HLHS@mayo.edu to learn more.

Mon, Sep 23 1:30pm · Special Guests at Feel the Beat 2019! Part 1 in HLHS

This year’s Feel the Beat is right around the corner! For the next few weeks, we’ll be giving you a sneak-peak of our guest speakers, agenda, and activities. Be sure to follow us on social media for more details!

 

HLHS blog - ftb guests

 

Naomi & Kelly Babcock

Naomi is a 17-year-old ballerina in training who was born with HLHS and is currently training year-round at Western New York Ballet in Rochester, NY. Naomi will be a high school senior this year, and hopes to join a company as a full-time ballet dancer after graduation and become the first professional dancer with a heart condition. Earlier this year, her school competed in the Youth America Grand Prix and received first place in the ensemble division.

 

Naomi was diagnosed with HLHS 48 hours after birth, but that hasn’t stopped her from accomplishing her dreams. She enrolled in her first ballet class as a toddler, performed in her first “Nutcracker” when she was 7, and just loves being on stage. When Naomi is not training or studying, she enjoys drawing, reading, and hanging out with friends.

 

Kelly is Naomi’s mother and biggest fan! She has encouraged IMG-6901Naomi throughout her journey to accomplish her dreams. Kelly and Naomi’s father, Tony, live in Naples, FL. Kelly is a stay-at-home mom and serves on the Board of Directors for an orphanage in Haiti, where she visits several times a year. In addition to traveling, Kelly loves music and animals.

 

Naomi will also do a special performance at the end of the day! We look forward to seeing you on October 12 – be sure to RSVP if you haven’t already!

 

 

 


Meet other people talking about HLHS or CHD on Mayo Clinic Connect – an online community designed to help patients and families connect with each other.  Our community is a safe space to share experiences, ask questions, find answers, and exchange support.  The discussion groups and topic pages are moderated to ensure that all posts are respectful, and Mayo Clinic Connect never sells or shares posted information to third parties.  Here are some you might like to follow:

 


The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. Our specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email us atHLHS@mayo.edu to learn more.

Mon, Sep 16 12:24pm · Attending Feel the Beat? We’ve got you covered on where to stay and what to do! in HLHS

Mayo HLHS blog - FTB collage

If you’re attending Feel the Beat on Saturday, October 12, we’ve got you covered on what to expect when you arrive in Rochester, Minnesota! Make sure to register for the event and contact Brianna Tranby if you have any questions.

 

Accommodations

Rochester offers a wide variety of lodging choices from hotels to AirBNB.com rentals.  Below is a list of the hotels closest to the Gonda Building at Mayo Clinic.

  • The Kahler Grand Hotel (link)
  • Rochester Marriott Mayo Clinic Area (link)
  • Kahler Inn & Suites (link)
  • DoubleTree by Hilton Mayo Clinic Area (link)

 

Parking

The Damon Parking Ramp at 15 Third Ave SW is directly across the street from the Gonda Building.  There is also street parking around downtown and the meters are free on weekends.

Note: Overhead announcements in Damon instruct visitors to take the elevators to the Subway level to enter Mayo Clinic.  However, the Subway entrance is closed on weekends.  Please go to the street level and exit the door on the right-hand side.  Follow the sidewalk to the nearby crosswalk at 1st Street & 3rd Ave and enter the Gonda Building.

 

Mayo HLHS blog - fall

Weather

The high temperature in mid-October is usually around 60 degrees. Sometimes we get warmer than average weather – but we’ve also had snow, so be sure to check the forecast before you pack!

 

 

Restaurants

Rochester’s restaurant scene gets better every year! Many of the best restaurants are located within a few blocks of Mayo Clinic, and some are even accessible via the walking skyway or subway systems. New this year at Feel the Beat, we’ll be hosting a ‘Social Hour’ for families who want to connect more with each other or with Team HLHS! This informal gathering will start right after the event at 2:00pm at Grand Rounds Brewing Company located 4 blocks from the Gonda building.

Mayo HLHS blog - fountain

Sightseeing

There are many fun things to see and do around Rochester! Fall will be in full swing, and there are several local orchards that offer family-friendly activities including corn mazes, wagon rides, apple and pumpkin picking, petting zoos, and more! The Rochester Mom’s Blog has a great guide to orchards in the local area.

Rochester’s many parks and nature centers are still bustling in the fall despite the cooler weather. Quarry Hill Nature Center has lots of hiking/biking trails as well as cave tours, fossil hunting, and indoor exploration hall. Silver Lake Park is just one mile from Mayo Clinic and includes Three Links Park, which is a large playground that’s completely handicap accessible with preschool to big kid areas.

If museums or historical tours are more your speed, we have plenty of those, too! The Rochester Trolley & Tour Company offers a variety of tours in town or around the SE Minnesota area. The Historic Mayowood Mansion, former home of Dr. Charles H. Mayo, is also a top tour spot in town. The Rochester Art Center is located a few blocks from Mayo Clinic and features innovative and contemporary art. If you’re in town on a weekday, most Mayo Clinic buildings are open for guided or self-guided tours.

There are also tons of other activities in the surrounding area including the National Eagle Center, Valleyfair Amusement Park, and of course the Mall of America, the largest shopping mall in the country — complete with an indoor Nickelodeon amusement park, Sea Life Aquarium, Crayola Experience, Lego store, and so much more!

 

We’re looking forward to seeing you on October 12!

 

 

The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. Our specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email us atHLHS@mayo.edu to learn more.

Tue, Sep 10 10:00am · New HLHS Program Blog Feature -- #ResearchRecap! in HLHS

HLHS blog - research placenta

With more young women reaching their childbearing years after Fontan, researchers are finding that their pregnancies may be complicated due to poor circulation. Researchers at Mayo Clinic reviewed the pregnancies of several women with Fontan anatomy. Our first #ResearchRecap reviews this article in a reader-friendly way.

(2-3 minute read)

 

——————————————————–
 

The pregnancies of seven women (13 babies total) at Mayo Clinic between 2002 and 2018 were studied, including detailed microscopic tests of the placentas after birth. All of the women were still alive when the paper was written. Two women developed preeclampsia (high blood pressure during pregnancy), and the membranes ruptured early (waters broke) in two other women. All 13 babies were born alive, but the average time of delivery was 35.4 weeks gestation – short of the >37 week time that is considered full-term. The average birth weight was 4.8 lbs. When reviewing the placentas, they were found to be thin, underdeveloped, poorly connected to the uterine wall, and less able to circulate blood compared to normal placentas.

Because the Fontan operation already results in increased pressure in the veins, particularly in the abdomen, the researchers note that “the rigors of pregnancy may prove difficult for women with Fontan physiology.” Additionally, the chronically poor blood circulation and lower oxygen saturation levels experienced by many of these women may affect the development of the placenta and lead to preeclampsia and poor blood flow to the baby.

The researchers note that some women after Fontan may be able to have successful pregnancies. However, because pre-term deliveries and lower birth-weights should be expected, “Pre-conception counseling, cardiology and obstetrical evaluation, peri-partum care and follow-up need to be meticulous.” Finally, they note two important questions for women considering pregnancy after Fontan: 1) Whether the increased stress on blood flow to organs and tissues will compromise her own quality of life and/or longevity, and 2) What is the probability of a favorable outcome for the baby?

More research in this important area will be needed in the coming years as more women with Fontan physiology enter their reproductive years.

 

Phillips AL, Cetta F, Kerr SE, Cheek EH, Rose CH, Bonnichsen CR, Phillips SD. The placenta: A site of end-organ damage after Fontan operation. A case series. Int J Cardiol. 2019 Aug 15; 289:52-55 Epub 2019 Feb 05

 

 

 

The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. Our specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email us atHLHS@mayo.edu to learn more.

Tue, Sep 3 11:33am · How to Choose the Right Hospital for Your HLHS Needs in HLHS

HLHS heart hands stethoscope

Hypoplastic left heart syndrome (HLHS) is a complex congenital heart defect in which the left side of the heart is severely underdeveloped. The care for patients with HLHS is complicated and requires multiple surgeries in infancy and sometimes into adulthood. Studies have consistently confirmed that when an institution performs high volumes of a complex procedure, their outcomes are significantly improved compared to low-volume institutions.

The information provided below is designed to help you and your family choose the right hospital for the type of HLHS care you need. Although choosing a hospital or provider may be impacted by insurance or finances, there are some important points to keep in mind.

 

High Volume = High Quality

The biggest distinction among pediatric cardiac surgery centers is the sheer number of patients they treat every year. The reporting data typically combines all cardiovascular surgeries performed on patients under age 18. However, only a minority of those cases are the complex surgeries that patients with HLHS need, such as the Norwood and Glenn. Because of the importance of having a surgeon and team who are highly experienced at HLHS surgeries, it’s crucial to find a center that routinely performs a high number of those procedures.

Decades of research has shown that having a few surgical centers that each specialize in different procedures leads to significantly better outcomes. This is because it allows surgeons and care teams to focus on the needs of a specific patient population instead of performing a broad range of procedures.

For example, in 1993, Sweden centralized its process for pediatric cardiac surgery by only allowing the top two hospitals with the lowest surgical mortality rates to operate. Within two years, their national average of surgical mortality dropped from 9.5% to 1.9%. This significant improvement also happened over a period of time when the centers were performing more complex surgeries than before.

Similarly in the United States, a review of over 32,000 patients across 48 centers found that low-volume centers had an average mortality rate of 14.8% for complex cases, compared to a significantly lower rate of 8.4% at the high-volume centers. Additionally, Norwood mortality rates at low-volume centers were 36.5%, compared to 16.9% at high-volume centers. All centers performed the same for low-difficulty operations. In other words, high-volume programs have lower mortality rates than low-volume ones when performing complex surgeries.

 

Transparency & Data Reporting

In order for patients and families to make informed decisions about where to get care, they need to have access to honest, reliable information. Hospitals must be transparent about their outcomes not only to reassure patients that they are safe, but also so hospitals themselves can focus on improvement.

The National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC) has been working with many centers to successfully implement quality improvement and transparency practices. However, they note that there are still many barriers, “including health care organization’s concerns about potential negative effects of disclosure on reputation and finances, and lack of reliable definitions, data, and reporting standards for fair comparison of centers.”

“Transparency – sharing data or information about outcomes, processes, protocols, and practices – may be the most powerful driver of health care improvement.”  ~NPCQIC, 2015

The Pediatric Congenital Heart Association (PCHA), the largest congenital heart advocacy organization in the United States, published their Key Tenets of Transparency in 2015. Suggestions for transparency include publicly reporting outcomes data, having a formal review process that regularly assesses performance, and providing families with a list of questions to facilitate transparent discussions.

Of note, the PCHA recently released a statement noting their concern with how US News & World Report rankings are calculated and presented.

The rankings appear to inflate centers that perform fewer complex procedures, ranking them higher than centers that frequently take on the riskier patients… At face value, these rankings do not allow families to consider such relevance to their child, particularly failing those families of children with complex congenital heart defects.

The concerns of the PCHA further highlight how vital it is for hospitals to provide the transparent data that families and patients need to make an informed decision.

 

Different Needs at Different Ages

As children with HLHS age, their medical and surgical needs change.  Older patients may need valve replacement, re-replacement, or heart transplant. Just like in the early stage surgeries, patients should look for hospitals that perform more of these procedures, and providers who specialize in managing HLHS in older patients.

The concept of “Centers of Excellence” has been developing in the health care field. It’s the idea that specialized programs can focus their efforts to provide exceptional care above and beyond general all-around centers. This kind of approach in HLHS care means that certain hospitals would become experts and excel at one aspect of HLHS care (ex., Norwoods and Glenns) while other centers excel in other areas (ex., transplant). Some hospitals have recently begun partnering with others nearby to reduce competition and develop local Centers of Excellence.

Regardless of what stage of HLHS care you or your child need, the most important thing to remember is this: High Volume = High Quality. You can find a list of questions the HLHS Program suggests asking at various stages of treatment on our website. Your provider should be willing to take the time to have an open, honest discussion with you – and you should advocate to get the information you need to feel comfortable and make an informed decision about HLHS care.

 

We would like to thank Sisters by Heart and the NPCQIC for their help developing these questions, and their dedication to advocating for transparency.

 

The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. Our specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email us atHLHS@mayo.edu to learn more.

Wed, Aug 14 11:26am · Your Guide to Reading Scientific Papers in HLHS

shutterstock_655005004

Scientific papers, also called research papers or journal articles, are a way for scientists to communicate knowledge publicly. Because researchers often write these papers to share their work with others in that field, they aren’t always easy for non-scientists to understand.

But finding and reading scientific papers is easier than you might think! Part III of our Demystifying Clinical Trials series will teach you how you to find, read, understand, and think critically about scientific papers.

Journals, Articles, and How to Find Them

A journal is a periodical that regularly publishes a collection of scientific articles. For example, the New England Journal of Medicine publishes articles on general medical topics, Nature publishes on general science, the American Journal of Cardiology focuses specifically on cardiology, and many other journals publish on cancer, pediatrics, etc. Many journals require a subscription, but most also provide articles for free after a few months. (For more on the process of how articles are written and accepted for publication, you can read our earlier blog post here.)

The American Association for Cancer Research has a great review of the most common sites to search for journal articles. These sites, along with Google Scholar, allow easy searching by keyword, disease, author, title, or journal. In addition to these sites, many doctors have profile pages on their hospital’s or clinic’s website that include a list of their recent publications. This is often provided as a citation list, which is a standard format listing the author’s names, year of publication, title, journal of publication for each article. Information from the citation can be used to find a paper on one of the common journal article search websites.

Parts of a paper

Newspapers have the same regularly occurring sections in the same order (major news, local, sports, weather, etc.). Similarly, scientific papers also have the same regular sections in the same order to ensure that information is presented consistently across all journals. Most scientific papers have the following sections:

  • Title and authors: The general focus of the paper, who wrote it, and where they work
  • Abstract: Spoiler alert – this is an executive summary of the entire paper, including the findings and conclusion. Abstracts are always provided for free to help readers determine if they want to keep reading (or possibly pay for) the whole article.
  • Introduction/Background: Reviews previous research, why this study was done, and the hypotheses the researchers had before starting.
  • Methods: Explains how the research was done. This section includes details on the sample (animals, humans, adults, kids, etc.), size of the sample, new drug or treatment procedures, data collected, and more. The section is very detailed so that other scientists can replicate the study to confirm the findings, and so people know exactly what was done in case there are questions.
  • Results: Extremely detailed scientific results. This section presents information on data analysis, technical facts and figures, and usually presents large amounts of statistical results in tables and graphs.
  • Discussion/Conclusion: This is the reader-friendly explanation of the results section. It also usually includes discussion of any weaknesses or limitations of the study and ideas for future research.
  • References/Bibliography: The citation list of previous research that informed this paper.

HLHS blog - ucb phase i paper

Most papers also include tables, graphs, and figures (pictures) to visually share important information. Journal articles are strictly limited to only a few thousand words – and a picture is worth a thousand words! In addition, it’s often easier for readers to see a picture demonstrating something like umbilical cord blood collection than to read several paragraphs and try to imagine the process.

 

How to Read a Scientific Journal Article

There are three main reasons people read scientific papers: 1) interest in a particular topic, 2) to gain information needed for treating patients, or 3) to inform new scientific research. With so many papers being published in so many places now, even professionals can use tips on how to efficiently read journal articles. The best suggestion comes from Dr. Subramanyam (2013):

The cardinal rule when reading papers is: Never start reading an article from the beginning to the end. It’s better to begin by identifying the conclusions of the study by reading the title and abstract.… After reading the abstract and conclusions, if the reader deems it interesting or useful, then the entire article can be read.

Journal articles are not novels that must be read from start to finish. Start by reading the abstract to get an overview of the sample, what was done in the study, and what the researchers learned at the end. Then, if you want to know more or still have questions, you can read the Introduction and Discussion sections. (The Methods and Results section share extremely technical data that is most useful to other scientists in that field.)

Thinking Critically about Journal Articles

As important as knowing the sections and how to read them is thinking critically about the paper you’re reading. The article may have been peer-reviewed by experts, but there are still important questions to keep in mind.

For instance, think about the sample. How many people did the researchers collect data on? Is the paper reviewing data from thousands of people across multiple countries, or only a few patients from one hospital? Where were they from? When was the data collected (e.g., recently or more than five years ago)? If the topic or condition is rare there will be fewer people available to collect data on, but looking at the sample size is always key when thinking about the bigger picture.

Another question to keep in mind is whether the authors discussed limitations to their study. All research has strengths and weaknesses, and the authors themselves should point out not only what might have hampered their work, but also how future research can resolve the problem. Additionally, most journals require authors to submit financial disclosure statements on how the study was funded and whether or not the authors receive money from an organization that presents a conflict of interest in their work.

The HLHS Program Presents – #ResearchRecap

Finding and reading scientific papers isn’t as overwhelming, or time-consuming, as it used to be. The internet now makes it easy for scientists share their work, and for the public to find and compare results from many different studies. There’s also a new movement among scientists to better communicate their work to the public in ways that are easy to understand. Many researchers now share their work and even answer questions from the public on their social media pages.

The Todd and Karen Wanek Family Program for HLHS fully supports this initiative and is excited to announce a new regularly-occurring series – #ResearchRecap! Beginning in September, our blog and social media pages will regularly provide a brief, reader-friendly overview of new scientific papers on HLHS or related congenital heart defects. We’ll try to include papers that are available to read for free, but will always bring you the most recent and most exciting research being published. Stay tuned!

 

 

 

The Todd and Karen Wanek Family Program for Hypoplastic Left Heart Syndrome (HLHS) is a collaborative network of specialists bonded by the vision of finding solutions for individuals affected by congenital heart defects including HLHS. Our specialized team is addressing the various aspects of these defects by using research and clinical strategies ranging from basic science to diagnostic imaging to regenerative therapies. Email us at HLHS@mayo.edu to learn more.