Adrienne found online communities helpful when recovering from Lyme disease

About two years ago I became very sick. After dealing with illness for a number of months I was finally diagnosed with Lyme disease. Suddenly I had an explanation for all the symptoms I was feeling: aches and pains, headaches, blurred vision, dizziness, memory loss, upset stomachs, anxiety, depression.

I was lucky to find a great local doctor and have a supportive network of friends and family to lean on. I took my prescribed antibiotics and felt better. I took time off from work and gave my body time to heal. Both played into my eventual recovery, as did the support network I found online. By connecting with an online Lyme disease community I learned what hurdles other people like me were facing, and how they beat (or at least coped with) those hurdles. I asked questions like what homeopathic remedies worked best for them? How did they alleviate anxiety? How were they able to ease the upset stomachaches caused by their antibiotics?

I was helping myself get better, and after a while started sharing my own remedies and coping mechanisms. The back and forth developed into strong, supportive relationships that were very important to me. They didn’t take the place of a trip to the doctor’s office or real life bonds I had, but it was so helpful to have access to people who understood my ups and downs, didn’t mind my occasional venting and were so eager to share information.

But this type of interaction isn’t exclusive to people with Lyme disease. A recent report by the Pew Internet and American Life Project shows many Internet users seek out exactly this type of health related interactions:

• 34 percent of Internet users have read someone else’s commentary or experience about health or medical issues on an online news group, website or blog
• 24 percent have read online reviews of particular drugs or medical treatments
• 18 percent have gone online to find others who might have health concerns similar to theirs

MyViewPoints

To encourage these types of relationships, we’ve created MyViewPoints, a user-generated tool that lets parents, children and clinicians share their tried-and-true methods for coping with a particular condition. With help from Genuine Interactive we’ve created a place where people in a similar situation can share, teach and learn at their own pace. Day or night, MyViewPoints is here for people dealing with various medical conditions to weigh in on what works for them—and see what has worked for others— before trying it themselves.

Please visit the MyViewPoints website and share your experience: what worked, what didn’t work, what would you do differently next time? Even if you don’t join the conversation you still can view results and read comments.

As with all user-generated content, we can’t guarantee the remedies mentioned will work for you, but it will provide you with links to the most up-to-date, Boston Children’s content around a particular condition or topic. Interested in learning more how Boston Children’s treats a specific condition? We will provide you with specific program information including how to request an appointment online or contact us by phone. Want to hear what our doctors think of the survey results? We will share these outcomes with our clinicians and allow them the chance to provide feedback through a blog, video or live webcast.

Most importantly, we hope MyViewPoints will inspire you to share with your friends, family, support network and community. Remember, conventional wisdom is only as strong as those who contribute to it. The more honest responses you can provide, the better your chances of helping someone like you, as well as yourself.

Please visit MyViewPoints page and chime in our first topic: “How do you treat seasonal allergies?”

Share your own experiences and weigh in on what topic we should address next.

*MyViewPoints is an educational site, offered as generally suggestive information among individuals with similar medical issues. MyViewPoints is in no way a substitute for the independent decision-making and judgment by a qualified health care professional. Your use of MyViewPoints does not create a physician/patient relationship, or hospital/patient relationship, among you, Children’s Hospital or any Children’s Hospital physicians, including the creators of the MyViewPoints. You should always consult a qualified clinician concerning a specific patient’s care and prognosis. Children’s Hospital Boston does not assume any legal liability or responsibility for the accuracy, completeness or usefulness of any information on MyViewPoints. CHILDREN’S HOSPITAL MAKES NO WARRANTY, EXPRESS OR IMPLIED, CONCERNING ITS FITNESS FOR A PARTICULAR PURPOSE, OR RELIABILITY, OR ANY OTHER WARRANTY, AND TO THE EXTENT ALLOWED BY LAW SUCH WARRANTIES ARE EXPRESSLY DISCLAIMED.” By participating in MyViewPoints, you agree to the statements in this paragraph.

By Vivian McNeeley

Angela

When I gave birth to my daughter, Angela, in the summer of 2005, she was a perfect, healthy, happy baby and we were thrilled to welcome our first daughter into our family.

As Angela grew she amazed us in every way. She was outgoing, smart, funny and not at all shy. She had a way about her that was all her own. I was a little concerned that she seemed to be a tad clumsy and unsteady at times, but figured that was just another part of the person she was becoming. When I asked her pediatricians about it they said not to worry, but as time went on there was no denying that her funny little swagger had turned into a noticeable limp.

After being referred to an orthopedic doctor at Boston Children’s Hospital, Angela was diagnosed with developmental dysplasia of the hip, which means she had a problem with formation of her hip joint. She was 5 years old at the time.

By most standards, 5 is still very young, but when it comes to catching and correcting hip dysplasia, it’s considered quite late. If identified between infancy and the baby’s first birthday, doctors can usually treat it with special harnesses or casts, but for a child Angela’s age, treatment is much more difficult and often involves multiple surgeries.

All of a sudden, we were in a whirlwind. Our daughter had a condition that we knew nothing about, and she needed immediate care. I started researching hip dysplasia in children as soon as I could. I wanted to take her to the doctors who were most familiar with the condition, especially in older children who have had a late diagnosis. I wouldn’t have to go far—all my research brought me right back to Boston Children’s.

Angela’s journey to repair her hips began immediately. MRIs various tests, and consultations followed. A team of hip specialists discussed Angela’s case at depth, and a treatment plan was formed.

Throughout the entire process, communication with the doctors was seamless. They taught us about hip dysplasia and answered every question we had. They were patient with us and allowed us all the time we needed to take everything in and fully understand what was happening to our daughter. They also spoke directly to Angela, making her part of the process. She was immediately very comfortable with her doctors and wasn’t as scared about what was happening.

Angela had her first surgery earlier this year in March. After 10 hours of surgery we finally got to see our little girl. She was lying in recovery in a hip spica cast and, nestled next to her, among all the tubes, was her stuffed bear who had also been fitted with a tiny spica cast. After surgery, the doctors had cast her bear in order to make her feel like she wasn’t alone.  This small gesture, by a team of weary doctors after a long, complicated surgery, made us realize we were in a very special place.

Angela post surgery

Angela will need future surgeries and will remain in the care of Boston Children’s Hospital into her adulthood. But she is doing wonderfully and, for the first time in her life, she can run without limping. It’s a new run for her, one without the funny little limp we thought was just part of who she was.

Watch this video learn more about how Boston Children’s treats developmental dysplasia of the hip.

Hailey Olson, seen here with Susan Chi, MD, and Mark Kieran, MD, PhD, is the first patient in a trial challenging the conventional wisdom about rare brain stem tumor. (Image: Sam Ogden, DFCI)

Hilary Olson had no reason to suspect that her daughter Hailey might have a brain tumor.

“Her smile was starting to droop a little, and one of her eyes was a little jumpy,” says the 6-year-old’s mother. “We took her to see a neurologist, and he thought she might have pinched a nerve.

“But when he sent us to Boston Children’s Hospital for an MRI,” she continues, “the radiologists sent us straight down to the emergency room.”

Hailey’s diagnosis came as a huge jolt: a rare, almost always fatal tumor called diffuse intrinsic pontine glioma (DIPG). “The doctors were shocked by the size of the tumor,” Hilary recalls.

DIPGs are so fatal because doctors haven’t had any success at treating them—and in fact haven’t known where to start. The problem has to do with where they occur. DIPGs nestle among the nerves in a portion of the brain stem called the pons, which controls our breathing, blood pressure and heat rate.

The pons is the area of the brain that regulates breathing. DIPGs are found in this area.

“For 40 years, we didn’t have the surgical techniques to safely take a biopsy of a DIPG,” say Mark Kieran, MD, PhD, director of the Brain Tumor Program at Dana-Farber/Children’s Hospital Cancer Center (DF/CHCC), a partnership between Dana-Farber Cancer Institute and Boston Children’s focused on treating children with cancer. “In fact, it’s still part of the dogma taught to every oncologist—’Don’t biopsy brain stem gliomas’—because of fears about the risk of severe or fatal damage. And because we couldn’t biopsy DIPGs, we couldn’t study them to learn what makes them tick.”

Looking to turn that dogma on its head, Kieran has launched a clinical trial that takes advantage of the last 40 years’ worth of advances in neurosurgery and in our understanding of the biology of cancer to target and personalize DIPG treatment. Hailey is the first patient.

“At first the doctors told us that Hailey’s tumor was inoperable, but in that first week that we got the call telling us about this new clinical trial,” says Hilary. “It had been approved two days after Hailey was diagnosed.”

Kieran’s team is working with Boston Children’s neurosurgeons Liliana Goumnerova, MD, and R. Michael Scott, MD, to carry out surgical biopsies on children newly diagnosed with DIPG. All of the patients in the trial receive the current standard of radiation therapy, along with bevacizumab, a drug that stops the growth of blood vessels to and within tumors. They then receive other drugs based on the analysis of their tumor, including erlotinib—which zeroes in on a certain genetic mutation found in some tumors—and/or temozolomide—which attacks tumor cells directly.

In part about putting the trial together, Kieran says, was challenging the surgical dogma about DIPG. “A colleague, neuro-oncologist Michael Prados, MD, from the University of California, San Francisco (UCSF) and I advocated for a decade, saying that the time was ripe to take a fresh look at surgical sampling and analysis of DIPGs. We were booed off the stage of every conference we spoke at,” he says.

Kieran’s team knew the opportunity was there, though, because surgeons in France had started operating on DIPGs, taking biopsies from more than 20 children with DIPG with no ill effects. “The French blazed the trail, but they didn’t have access to the kinds of molecular tools we have here for finding out which treatments might work best for each individual tumor,” he says.

Mark Kieran, MD, PhD

Their break came three years ago when neurosurgeon Nalin Gupta, MD, PhD, from UCSF, spoke at a neurosurgical conference on Prados and Kieran’s behalf. Suddenly, everyone’s heads started nodding. “The difference was that we had a neurosurgeon, not an oncologist, speaking to neurosurgeons.”

Chris Carpenter and patient

Chris Carpenter, MD, of Boston Children’s Hospital’s Global Pediatrics Program (GPP), sees the world a little differently than most people. When faced with news stories about poverty and suffering in Africa, many of us see tragedy; Carpenter sees an opportunity to help.

Now he’s sharing his vision with the world, through the eyes of a camera. His documentary film, “Born in Goma” captures his time in the war-ravaged Democratic Republic of Congo, focusing on three special patients— Isaac, Gisele and Dieume—trying to survive in the midst of extreme poverty and violence.

Be aware, some of the following images are somewhat graphic in nature.

After finishing medical school and his pediatric residency, Carpenter was ready to embark on a personal mission to practice medicine in areas wracked by violence and lacking in resources. In October of 2009, he went to Goma, an eastern city in the Congo, where he worked with families whose daily life was a constant struggle. But despite the harsh conditions, most of these people had an unbelievable will to survive.

“Seeing how strong the people of Goma were, despite all they were up against, was such an eye-opener,” Carpenter says. “It made me realize that with real determination, humans are capable of amazing things. It made me strive to be a better doctor and a better person.”

But when he returned to the United States, Carpenter found it difficult to put into words what he had seen in Goma: the immense poverty set against a beautiful jungle backdrop, hope amidst violence and the inspiring way his patients celebrated small successes against seemingly insurmountable odds.

Carpenter realized he couldn’t fully express his patients’ experiences with just words, so returned to the Congo and create a film that would show people what it was like to be “Born in Goma.”

“To truly understand life in the Congo, you have to see it,” he says. “In a way that’s what I’m trying to do with the film. I want people to see—good and bad—what I’ve seen there.”

Carpenter used his savings to purchase a camera, audio and lighting equipment and researched “how to film a documentary” online. Once he had sufficient equipment and know-how, he boarded a plane for Goma.

Within days of arriving, Carpenter met Isaac, a spirited and fun-loving child living with HIV. At first, Isaac was shy in front of the camera, but after a few days, he became more comfortable in the spotlight.

A few months into filming, Gisele came to the hospital for her first prenatal visit. She was a mature young woman with a story to tell. Over the following months, Carpenter visited her remote home in the mountains many times.

Two weeks after Gisele gave birth, Dieume was brought to the emergency room with six gunshot wounds. After he had healed and grown comfortable around Carpenter, he agreed to share his story. Shy and immobile at first, Carpenter soon had trouble keeping up with him.

As rewarding as the experience was, Carpenter says there were many challenges in creating the film. He and the small local crew he assembled to help film were attacked, threatened and robbed. They were involved in two serious vehicle accidents that left them stranded in remote, dangerous areas for hours or days.

With just a little help, we can give a struggling kid, with the odds stacked against him, one more chance at a good life. -Chris Carpenter

Finally, after six months of daily filming, Carpenter returned to the United States with 110 hours of footage. He hired an editing team and spent the next several months piecing together the remarkable stories of the people he met. Now complete, Carpenter hopes “Born in Goma” will help others see the Congo as he does.

“In America we are blessed to not have to know about some of the issues the people of Goma face everyday,” he says. “I hope this film will expose people to those issues, and maybe inspire them to help in some way.”

Born in Goma will be shown on May 21, at 12 noon in the Enders Building, Byers A&B.

By Kathryn Michalski

Peter

When my son Peter and I go out, it’s not unusual for people to fawn over him a bit.

“What a happy kid.” “He’s so smart.“ “It makes me smile when I see him,” we often hear. As a mom raising a child with as many health issues as Peter has faced, these comments brighten my day.

Peter was born with an arteriovenous malformation (AVM) in his liver, meaning his veins and arteries weren’t connected properly. When he was just seven months old, the AVM completely disrupted the blood flow to his liver and small intestine, causing multiple holes in his small intestine. He became gravely ill after that. At our local hospital, Peter had one surgery to remove the AVM and three more to salvage what was left of his intestines.

When it was all over, Peter had four ostomies (a surgical opening made in the skin as a way for waste products to leave the body) and a gastrostomy (a surgical opening into the stomach, where a feeding device can be inserted). He couldn’t digest food properly, so he had to receive all his nutrients intravenously (IV), through a medication called total parenteral nutrition (TPN).

Having a child on TPN is a lifestyle, for both patient and parents. It requires refrigerating IV bags and medications, and storing huge amounts of tubing, caps, alcohol preps, pumps, dressing change kits, and other supplies. There is a daily ritual of preparing the medicine and hooking it up, and because TPN requires a permanent central line for IV access, there is always a risk of infection that needs to be closely monitored.

Peter and his evening medical equipment

At 7:30 a.m., Peter wakes up and I take down his TPN bag, flushing the line with saline and a small amount of either heparin or ethanol to keep it clean. We protect the peripherally inserted central catheter (PICC) line in his arm with a footless sock, and we head downstairs to have breakfast. (Some mornings the sheets are wet since he gets so much fluid overnight.)

Around noon, I take a new TPN bag from the refrigerator, so it will be room temperature by evening.

After dinner, Peter’s dad or I wipe down the dining room table and take out a plastic cafeteria tray we use for TPN preparation. The tray is easy to wipe down with alcohol and gives us a very clean surface to work on. We inject the TPN bag with a syringe of multivitamins, assemble the tubing, attaching it to the TPN bag and the IV pump. Peter also takes a lipid (fat) called Omegaven, which requires a second pump, and also gets a tubing set-up.

preparing TPN treatment at home

At midnight, we hang up a second bottle Omegaven. In the morning, one of us attaches a small saline bag to the tubing to flush the last little bit of Omegaven out of the tubing.

After that the routine starts all over again.

Caring for a central line at home

Once a week, my husband and I change Peter’s PICC line dressing. This is a sterile procedure, done with mask and gloves. Even though Peter is six-and-a-half years old, and we have been doing this with him for years, two adults are still needed because Peter sometimes forgets to stay still. If the PICC line comes out during the procedure, it means a trip to the emergency room. My husband holds his arm still, and I do the cleaning and placement of the new dressing. While this is happening Peter watches a DVD and is quite fine with the 20-minute procedure.

Once a week, I also change his PICC line cap. This is also done sterilely. A cap change only takes about three minutes, and Peter is able to stay still with only one parent doing this.

Securing supplies

Omegaven and tubing

We get Peter’s Omegaven at Boston Children’s during visits with the Center for Advanced Intestinal Rehabilitation (CAIR) team every month to every other month.

A team effort

The HPN Program Team (l-r): Clifford Lo; Brittany Tellier; Jacqueline Riso; Carlotta Hayes; Bram Raphael; Lisa Summers; Kathleen Gura; Meghan Dalton; Daniel Kamin

Because we live in Pennsylvania, and the CAIR team is in Boston, a lot of communication happens over the phone. At least once a week, I talk with Peter’s Home Parenteral Nutrition (HPN) nurse practioner, Meghan Dalton, NP, MSN, CPNP. Meghan has been a welcome addition to Peter’s medical team since we met last fall. I give her updates on how Peter is doing with his food intake, weight, urine and ostomy outputs, and overall health. Meghan talks with Daniel Kamin, MD, Peter’s dietitian Brittany Tellier, and Bram Raphael, MD, director of the HPN program, as well as the rest of the CAIR team. Anywhere from once a week to once a month, Peter has blood work drawn off his PICC line and we drop it off at a local lab. The results are then faxed to Boston Children’s for review by his medical team.

Once the team has discussed Peter’s case and recent blood work, Meghan gets back to me with a plan. Sometimes we talk with greater frequency if there is something new going on with Peter. I have absolute confidence that they have Peter’s best interest always at heart, even when medical issues happen at inconvenient times.

Peter at Boston Children's

Peter has an excellent surgeon, Rusty Jennings, MD, who has painstakingly spent hours in surgery fixing the problems with Peter’s bowel. Peter continues to see the same doctors that he first met in December 2006 and that continuity of care is very important to us. When they met us, Dr. Puder thoroughly explained how Omegaven works to protect the liver in kids who are on TPN, and Dr. Kamin and Dr. Kim spent countless hours sorting out how to work with Peter‘s damaged bowel. They never handed him off to another team of doctors because they were done with their rotations.

Dr. Kamin especially has been instrumental in Peter’s care. Over the five and a half years we have been coming to Boston, he has maintained excellent recall of Peter’s lengthy health history. He keeps us closely involved in the medical decisions, and constantly keeps in mind the overall goals we have for Peter. He focuses on Peter as a person, not just an illness. And even though he’s only six, Dr. Kamin’s dedication to our family isn’t lost on Peter; last Halloween he went trick-or-treating as his favorite super-hero, Dr. Kamin.

Treating a child with chronic illness is a learning process that can seem never-ending. Based on my six years of managing Peter’s TPN, here are few tips I’ve learned:

1.   Learn proper sterilization techniques. One you’ve mastered them, be ready to teach to anyone (family, medical professions, etc.) who will be looking after your child. Don’t be afraid to speak up if you feel someone is not being properly sterile with the central line.

2.   Find a primary doctor or medical team immediately. When facing long-term illness, your child may be cared for by many people, a good primary doctor greatly facilitates communication and direction of care.

3.   Find a support group.Yahoo Short Bowel Syndrome group and Oley have been very helpful for my family. It is remarkable to see what very full lives people can live while on TPN. Their stories provides me with inspiration when I am feeling frustrated.

4.   Keep a reserve stock of supplies. Glitches in insurance payment, supply availability, holidays or weekends and other unforeseen circumstances will happen. It’s best to extra supplies (dressings, medications, formula, etc.) on hand.

5.   Keep TPN supplies in a clear, organized place. All those small boxes add up and take up a lot of space!

Tonight at 8 pm, HBO will debut a four-part documentary series, The Weight of the Nation, an unflinching look at the severity of the obesity crisis in America, and its crippling effect on our nation’s health and economy.

HBO and the Institute of Medicine of the National Academy of Sciences have joined forces to bring together the nation’s foremost experts on weight and weight loss for a frank and educational look at obesity in America. The series explains how weight became such an issue in this country and provides answers for how we can get to a healthy weight by overcoming the forces that drive us to eat too much and move too little.

Elsie Taveras, MD, MPH

Boston Children’s Hospital’s Elsie Taveras, MD, MPH, is featured in the series, focusing on how obesity affects America’s children. As Co-Director of our One Step Ahead Program, Taveras knows how serious a problem obesity is for young people, and has advice for parents on how to turn the tide against the epidemic. Her advice couldn’t come at a better time. Did you know:

• Childhood diabetes has increased ten-fold in the past 20 years.
• Sugary drinks are a leading contributor to increasing obesity rates and children today drink 500 percent more soda than they did in the 1950s.
• Kids see 10,000 food commercials a year, 95 percent of which sell fast food, soft drinks, candy or sugared cereals.
• For every hour of TV a child watches, he increases his risk for obesity by 12 percent.

These are eye-opening statistics, but Taveras and her team at One Step Ahead are working hard to change things. Their program is designed to teach children and families about healthy lifestyle habits, and offers advice on how to make physical activity and healthy food choices part of their lives. Services include:

• Answering questions about healthy activity and nutrition
• Helping parents learn how to best manage their child’s weight
• Providing families with ideas on how to be more active

If your child is struggling with weight loss and you are unsure of how to help, please use the following links to contact the experts at Boston Children’s One Step Ahead Program, or the team from New Balance Foundation Obesity Prevention Center Boston Children’s Hospital.

Feeling "a little" pinch is a small price to pay for good healthcare. But we can do more to reduce the discomfort. (UNICEF Sverige/Flickr)

I remember distinctly both of my boys’ 4-month-old well visits. Mostly because of the shots: all four of them.

Neither boy was particularly happy about being poked that much (though the shiny Band-Aids afterward did help a little).

My wife and I would have loved to help ease the pain of the shots, but we didn’t have any idea how. Frankly, I don’t know that, in the moment, it crossed our minds that there was something we could do, and it wasn’t something we thought to ask our pediatrician about. I mean, it was just a little bit of pain, right?

The problem, though, is that those little bits of pain add up. “Millions of injections are given to children around the world every year,” says Neil Schechter, MD, a pain specialist in Boston Children’s Hospital’s Anesthesia Department. Schechter recently published an article in Pediatrics where he commented that while we’ve come a long way in the last 50 years in understanding and addressing pain in children—especially after surgery or due to chronic illness—pain in the pediatric office hasn’t received the same level of attention.

“The pain from shots and other minor procedures in a pediatrician’s office doesn’t have the same poignancy as pain in an inpatient setting,” he says, “but it is still pain. And if we want to encourage patients’ and families’ cooperation and participation in routine healthcare, we want to keep pain to a minimum.”

My older son (now a second grader) napping after his 15 month well visit. Note the shiny Band-Aid on his leg.

It’s not that we lack methods for reducing pain from injection or small procedures in the office setting, even if the evidence for some of them is more anecdotal than objective. There are many local anesthetics that can be put on the skin to numb the feeling of a shot, but they can take some time to kick in. Giving a baby a little sugar water or letting him or her breast feed during the shot(s) can help. Putting pressure on the arm or leg (depending on the child’s age) around the injection site can lessen the feeling of a shot. And though it seems counter intuitive, so does the use of longer needles: “Short needles don’t get far enough into muscle,” Schechter explains.

And then there is distraction—engaging the child with a game or a book—to turn their attention away from what’s going on. (Schechter showed me a video in which the pediatrician runs a vibrating toy up and down a little girl’s upper arm, telling her to say, “elbow” when he reaches her elbow. She’s so absorbed in the game that she doesn’t even notice the nurse giving her a pair of shots in her other arm.)

“You don’t want to start talking about the procedure too far ahead of time, nor too close to when it will happen; that can actually increase anxiety and pain.”

Parents can also play a huge role in making doctors’ visits less painful. For instance, parents’ demeanor at the time of a shot has an impact. “Sometimes parents can be overly apologetic or empathetic, or take a more critical, ‘tough it out’ approach. Both can make the child more anxious,” Schechter warns. “The best attitude is probably one that is more matter of fact.”

Preparing a child ahead of time can work, too, though timing it right can be tricky. “You don’t want to start talking about the procedure too far ahead of time, nor too close to when it will happen; that can actually increase anxiety and pain,” Schechter says. “In the end, parents know how their child will react and are best equipped to prepare their child.”

So the methods are there, but why aren’t they used in pediatrician’s offices more often? That’s something Schechter is trying to understand better. “Some of these methods can be time consuming, and can add to the cost of a visit,” he says, based on surveys his team has conducted over the last few years. “The logistics of using local anesthetics, for example, can be challenging because sometimes it can take a little while for them to take effect.

“At the same time, we know from our work here that, with education, practices can successfully employ these methods to the satisfaction of both families and staff,” he continues. “It can sometimes take a few extra minutes or a second staff member in the room, but it’s worth it to, in the long run, avoid anxiety for the whole family about going to the doctor.”

By reviewing a computer based screening on patient alcohol use, doctors can help reduce underage drinking according to a new study

Can a doctor really persuade a teenager not to use alcohol or drugs with a two or three minute intervention? The answer is “yes,” according to a new study in the journal Pediatrics.

Conducted by Sion Harris, PhD, CPH and her team at Boston Children’s Hospital’s Center for Adolescent Substance Abuse Research (CeASAR), the study demonstrates that a small effort on the part of patients and primary care physicians can go a long way in combating underage drinking.

“In just a few minutes we can make a significant impact in reducing teenage alcohol use,” says Harris. “By streamlining the alcohol screening process for clinicians and patients alike we can make the process easier and more efficient for everyone, which will yield more positive results.”

Teens in Harris’s study completed a five-minute computer-based survey, known as the CRAFFT, which asks six simple questions about alcohol and drug use. After the screening users are assigned a “score” and risk level based on their answers. They’re then directed to 10 illustrated pages of stories and science-based evidence about the serious health effects of alcohol and drug use.

The teen’s physician receives the results as well, and a list of talking points on the medical problems caused by alcohol and drugs, which the doctor uses to prompt a two to three minute discussion with the patient. The final point has the doctor inform the patient that it would be best for their developing brain to not use alcohol or drugs at all.

Three months after screening, teenagers in Harris’s study were almost 50 percent less likely to drink compared to teenagers who didn’t complete the program. Interestingly, they were also 25 percent less likely to drink one year later. Harris’s findings also suggest that patients in the study found their doctor visit more satisfying and were more likely to heed their doctor’s advice.

John Knight, MD

The CRAFFT screening was originally developed by John R. Knight, MD, senior author of the study and director of CeASAR.

“We designed the CRAFFT specifically for teenagers,” says Knight. “It’s meant to be brief, easy to administer and simple to score.”

Each ‘yes’ answer scores one point. Data shows that a total of two or higher indicates with 80 percent accuracy that the patient has a substance abuse disorder.

The American Academy of Pediatrics already recommends that doctors screen all of their adolescent patients for substance use and provide brief counseling as a part of routine care. But in the modern age, when pediatric visits are often under 30 minutes, many doctors say they don’t have time to screen for substance abuse because their patients have more pressing health issues that need to be addressed. To counteract this problem, researchers monitored the effectiveness of having patients take the CRAFFT test electronically before visits.

By completing the screening prior to the visit, the doctor is given more time to interpret results and discuss them with patients. The patient is also primed for the doctor’s advice because he is already aware of the personal risk. That heightened awareness, combined with the immediate counseling from a doctor, seems to have a noticeable affect on many young patients.

“Our research has found that teens view pediatricians as trustworthy sources of health information, and a doctor’s recommendation not to use has a powerful impact on teen behavior,” Knight says. “This is the first study to show that a primary care doctor’s advice can impact teen substance use.”

Are you concerned about drug and alcohol use in your home? Ask your child’s pediatrician about CRAFFT screening, or contact Dr. Knight and his team at the Center for Adolescent Substance Abuse Research at 617-355-2727, CeASAR@childrens.harvard.edu