iScoliosis.com Gets Ready to Turn 10 Years Old!

Me: Before Medtronic got involved, the two of you had been hosting the iScoliosis.com Web site for a few years. What was the original vision for the site?

Dr. Gollogly: John Smith and I started the site in 1999, and at the time, we thought that we were creating a local site for local patients. John had a well established scoliosis practice at the University of Utah, and I was a resident. We were looking for a way to make the information that we felt like patients needed more available, and we were unhappy with the worn out and tired brochures or photocopies that we were used to giving patients. We published about 30 pages of HTML, with some real-life examples of cases that had been treated at the University of Utah, and we were surprised by how fast the traffic increased and before long, we were getting messages from all over the US and beyond. We needed a local resource for parents and their kids, who were recently diagnosed with scoliosis, to learn more about their condition and treatment options, but we ended up starting a global site. In the process of building and maintaining the site, we learned more about how these families go through a real emotional time when first dealing with the diagnosis and we noticed that they weren't real good at asking questions. So, we found it invaluable to send them to a credible resource where they could learn about the condition, read success stories and receive some hope. We find that patients who are better educated about their condition are better prepared for the journey and often have outcomes that better match their expectations.

Me: Before iScoliosis.com and the Internet, where did parents go for information?

Dr. Smith: They would go to their friends or a library. We used to have a brochure that helped describe the condition, but it was never up to date with new treatments and didn't provide a way to interact with the content.

Me: Do you find that patients, or their caregivers, amass a great amount of knowledge and resources when they are researching a health problem?

Dr. Smith: Absolutely. The Internet has made that so much easier. Patients are smart, and they aggregate massive amounts of content that is relevant to them. It is a process that actually helps them prepare for the journey of a treatment. It helps put them into control of the process, which I think is an important aspect of their recovery phase. We quickly got used to patients coming into clinic with a printed copy of the site, highlighted, and marked up. In advance, many of them had already a firm grasp of the criteria for diagnosis, the techniques of surgical correction, and knew exactly where the decision points were.

Me: When we first launched iScoliosis.com, there was an 11-year-old patient who kept a journal of her condition and surgery. She shared her journal on the Web site for visitors to read. Michelle's story was pivotal to the site's message and really gave the site a personality. Even though we have added additional stories, Michelle's story and her journal are still one of the most popular stories.

Dr. Gollogly: Yes, Michelle's story is still a relevant story today. Today there are thousands of kids going through what she went through, and they can read her story and be inspired.

Me: Why do patients or their parents, in the case of scoliosis, need hope and inspiration?

Dr. Gollogly: Being diagnosed with scoliosis, especially if it is aggressive, can be scary. Not only for the kid, but also for the parents. It's important that parents take the time to really learn and understand the scoliosis diagnosis, the condition and the treatment options. Sometimes parents worry that the condition is somehow their "fault," which is ridiculous. We call the diagnosis "idiopathic" because we don't know what causes it, we suspect it has to do with genetics, but we are still learning about it. So, because this is a condition that most commonly happens in preteens, it is very emotional for parents.

Me: How is scoliosis usually discovered by a parent or by someone close to the child?

Dr. Smith: This is where parents really drive themselves crazy with guilt, because often it goes unnoticed for a period of time. In Michelle's case, her dad was walking behind her and noticed that her shoulders were uneven. This discovery drove them to look at her more closely. Oftentimes it is missed until the curve is rather noticeable.

Me: Do you have a good school screening program in California?

Dr. Gollogly: Yes. School screening is pretty ubiquitous in the United States. But most of our referrals come from the pediatricians, and they are all skilled at looking for signs of scoliosis. Most kids are identified pretty early in the process, but it always comes as a shock to the parents, because they swear that the child was straight as an arrow "just yesterday."

Me: We worked with a spinal surgeon in St. Louis, Dr. Lawrence Lenke, and his nurse, Kathy Blanke to develop a simple, easy-to-use set of tools so that a school nurse would have what they needed to effectively put together a solid screening program. The Scoliosis Research Society has applauded the effort by allowing us to use their logo on the materials. Have you had a chance to review Medtronic's new school screening program, called Spine Check?

Dr. Gollogly: Yes, I have. I think it is great. Didn't you have a similar program a few years ago?

Me: We did. It was called Check Your Child, and it was designed for parents. We updated the program and renamed it more appropriately for school nurses. There is current legislation being reviewed that would require schools to screen for scoliosis, so we felt that a simple, easy to use program would be helpful for the schools.

Dr. Smith: A well-put-together program is so necessary, because the screening process can create so much unnecessary anxiety for families. Sometimes by the time that I see a new patient and their parents in the exam room, they are scared, nervous and ready to break. And a lot of this anxiety is unnecessary, because the vast majority of kids who are identified in the school screening process are never going to require a brace or surgery. It really helps when they come into the office already aware of the fact that 1 in one thousand girls has a very small curve (often picked up on school screening), but only 1 in 10,000 will need surgery for scoliosis.

Me: You bring up the emotional side of dealing with a scoliosis diagnosis again, is their an appropriate forum for these parents to discuss the issues?

Dr. Gollogly: I think that the iScoliosis.com site is a great place to start their research and to gain some perspective; however, they need more than static content. As with many conditions, an advocacy type network or some type of social network is really helpful in getting people the emotional support that they need.

Me: When I think of early "social networking" on the Web, traditional chat rooms come to mind. Is that what you are talking about?

Dr. Gollogly: Those are certainly helpful, but often they can be problematic because of the looseness of the group and the inability to share research, like documents, etc. When people are managing a chronic condition over time, they tend to become experts in the condition. This means that they aggregate a large amount of information and understanding about a condition. Oftentimes they want to share it. And, if you are new to a condition, then it can be of great benefit to plug into those who have gone through, or who are going through, the experience to share information and support.

Me: With your concept, how do people come together to share experiences with a condition such as scoliosis?

Dr. Gollogly: It happens in my practice all the time, they ask to talk to another parent. I've been working on a new web project that makes this process a bit easier by facilitating the process of communication outside of the doctor patient relationship. I actually have a list of parents' names that like to share information and help other families, but the Health Care Insurance Portability and Accountability Act (HIPAA) limits my ability to do blind introductions. I've been working on a social networking site organized by the correct names for medical diagnoses. In the online world it happens by setting up or joining a current NODE, which is a Network of Defined Environments, where people sign up to be part of defined network or node based on a particular topic, like scoliosis. This gives them a chance to interact privately, or publicly, they choose their level of involvement. When you are part of one these groups, or NODEs, all of a sudden you have advice and information from hundreds of experts.

Me: Would you as a surgeon, ever participate in a social networking situation with your patients? Why or why not?

Dr. Gollogly: Most doctors who speak publicly or use the internet to educate patients make a distinction between providing education — general information that is of use to everyone -- and providing health care -- specific information that requires a proper doctor to patient relationship. When I speak publicly, I try to begin my talks by explaining the difference, and when we are online, I think that we should try to do the same. Health care occurs when a doctor can see and interact with the patient, take a history, and perform a physical examination. Education occurs when someone asks me a general question about a topic that I am particularly interested in. The internet is a great educational resource, but it is not an appropriate substitute for proper health care.

Me: How much "conversation" or "social networking" is common for patients with spinal conditions?

Dr. Gollogly: It typically depends on how long the patient has the condition. Patients tend to interact online only when they have a reason to learn or share. The more chronic the condition, the more desire to be part of a more formal NODE or network.

Me: What are some of the other chronic conditions that would benefit from social networking?

Dr. Gollogly: The medical conditions that have the highest internet relevance tend to be chronic, they tend to wax and wane in how symptomatic they are, and there tends to be a fair amount of controversey about diagnosis and treatment. For example, there are really robust online communities around fibromyalgia, autism, diabetes, etc. For obvious reasons, orthopedic fractures tend not to have a lot of online relevance. However, what we are seeing now is that really rare diseases have a lot of online relevance because people can use the internet to share information about how these diseases are treated at different medical centers around the world, and that can be really important to individual patients.

Me: How has online patient education evolved since you and Dr. Smith developed iScoliosis.com?

Dr. Gollogly: In the early days of the internet, having any information was good. Then it became an issue about content, and having fresh content, albeit static, was good. Then came tools to create more interaction. Then video made it more entertaining. And now, consumers are actually saying that they want to have more control over the content, the tools and the format. So, it's moving into more of a networking scenario. Look at how many blog sites are out there. More and more patients have started blog sites to discuss their conditions, now they are moving into more interactive online groups.

Me: Let's talk about the actual scoliosis surgery. What are some of the surgical treatments that you have found to be the most valuable as a surgeon who provides this treatment to patients?

Dr. Gollogly: There has been a lot of progress over the past 40 years in scoliosis surgery. In the 1950s and 1960s many of the kids with scoliosis also had polio. So, when they eradicated polio, they felt that scoliosis would go away as well. However, it didn't. So, they would place the kids in body casts for months and months, sometimes years. This was such a common practice until a few pioneering surgeons experimented with surgically placing metal rods into the spine to bring the scoliotic curve into a natural shape. In the 1980' this really started taking shape with the legendary pioneers, Yves Cotrel and Jean Dubousset in France. Plus, there were great strides being made at the Texas Scottish Rite Hospital for Children in Dallas.

Me: Yes. In my two blog postings, I shared the history of scoliosis surgery as the CD HORIZON® LEGACY™ System celebrates its 25th anniversary and the TSRH® System just celebrated a 20-year history. Many say that the history of spinal surgery is closely tied to the learnings from scoliosis surgery. This procedure has been refined many times with modern instrumentation and techniques. You are so right, today's surgical treatment looks very different than it did in the early days. Most importantly external body casts have not been used since the CD® System, with its three dimensional rotation concepts. So, is this the type of system that you use in your practice?

Dr. Gollogly: Yes, it is. Twenty-five years makes it sound old, but it really is still relevant, especially with the refinements that have been made a long the way. There is no real reason to over-tech this procedure. It's more important to have a surgeon who is really comfortable with the technique and to enter into the journey with a good healthy attitude and expectation.

Me: What is one of the most important aspects of having your expectations in line?

Dr. Gollogly: Well, this is major surgery. People need to understand that this is not a trivial undertaking. At the same time, we do a great job of getting kids back to their normal lives pretty quickly. I tell a lot of patients that the best way to manage their care, and by extension their natural anxiety, is to have appropriate expectations. If my patients have the same expectations that I do, then we'll be happy. As a group, scoliosis surgeons tend to have pretty high expectations, and the vast majority of them feel like they are in good hands. Being well educated about this process helps to smooth out the "bumps" in the road.

Me: I remember when we filmed the "Meet McKenna" story. We purposely left in the footage of immediate post-op in the recovery room when she was groggy and a little cranky. We left it in because it was authentic.

Dr. Gollogly: Yes, it's important that parents and their kids view that story before surgery. It's also important to watch the story unfold as McKenna recovers and gets back to full function.

Me: Thank you Dr. Gollogly and Dr. Smith for spending time with us.