Getting Off to a Good Start
Ask any insulin pump trainer if he has ever seen a pump user with inadequate training and the first response is usually a sigh. “I always think of this sign I saw once that said, ‘We fix $8 haircuts,'” says Ginger Such, RD, CDE, program director of the Indiana University Diabetes Center in Indianapolis, Indiana, after issuing the obligatory sigh.
Pump trainers tell tales of people who don’t recognize climbing blood glucose levels as a sign that their pump may be malfunctioning — even after giving themselves several doses of insulin with it. Others know of people who have developed diabetic ketoacidosis — a life-threatening condition characterized by very high blood glucose — after ignoring a “low battery” alarm at bedtime or failing to check their blood glucose level after changing their infusion set to see if insulin was indeed being delivered.
“We’ve just seen too many people show up here without any training,” says Karen Chalmers, MS, RD, CDE, an advanced practice diabetes specialist for nutrition and pumping at the Joslin Diabetes Center in Boston, Massachusetts. “They’re in and out of emergency rooms with high blood glucose levels, low blood glucose levels… They have [only] one basal rate and [have had only] one hour of training. They go around bad-mouthing the pump, and the problem is not the pump; they just don’t know how to use it.”
A particularly alarming story was told by Stephen Ponder, MD, CDE, Director of Pediatric Endocrinology/Diabetes at Driscoll Children’s Hospital in Corpus Christi, Texas, who cared for a four-year-old boy airlifted to a hospital at 4 AM because he was having seizures from a low blood glucose level. Dr. Ponder summarized the child’s situation as follows:
- The child’s HbA1c level was 10.2%. (The American Diabetes Association’s [ADA] recommended target HbA1c level for most people with diabetes is less than 7%, and the American Association of Clinical Endocrinologist’s is 6.5% or less. The higher the HbA1c, which is a measure of blood glucose control over the previous 2–3 months, the higher the risk of diabetes complications.)
- The child’s mother didn’t understand that he needed bolus doses of insulin at mealtimes, believing that the pump would meet all of his insulin needs.
- The pump’s “auto off” feature, which was activated, was turning the pump off frequently because boluses weren’t being given.
- The mother didn’t know about carbohydrate counting.
- The child was routinely having serious low blood glucose during the night and high blood glucose during the day because of incorrectly adjusted basal insulin infusion rates.
That one incident prompted Dr. Ponder to submit a resolution to the American Association of Pediatrics (AAP) Annual Leadership Forum focusing on the need to develop guidelines for the proper training of families of children with diabetes who were considering insulin pump therapy. His resolution, with some modifications, was accepted in August 2005. While physicians are under no obligation to adhere to policies set forth in resolutions and position statements, “Plaintiffs’ attorneys love to use them during depositions,” says Ponder.
Other professional organizations, including the ADA and the American Association of Diabetes Educators (AADE) already have position statements in place regarding pump training. Both of these organizations put an emphasis on extensive education by a professional team familiar with insulin pumps.
Such, Ponder, and others don’t want to fix $8 haircuts: They want everybody who has an insulin pump to be properly trained in the first place.
“Anybody can learn to press buttons, but that’s the easy part of pump therapy,” says Audrey Finkelstein, executive vice president of sales, marketing, and clinical affairs at Animas Corporation, maker of Animas insulin pumps. “There are other issues.”
Those “other issues” are what should be covered in pump training sessions when a person decides to explore the option of using an insulin pump. Pump training can be broken down into four basic components: pre-pump assessment, pump management and trouble-shooting, extensive contact with the trainer or physician during start-up, and a follow-up that includes training on using a pump’s optional features.
Using an insulin pump successfully requires certain knowledge and skills. The purpose of a pre-pump assessment is to determine whether you have that knowledge and those skills and to fill in any gaps, if necessary.
For example, do you know how to count carbohydrates? This is necessary for correctly calculating mealtime insulin doses. Do you know how to use insulin-to-carbohydrate ratios? This is also necessary for calculating mealtime insulin doses. Do you know your correction factor — or how much one unit of insulin lowers your blood glucose level? Do you understand what a pump can do for you — and what it can’t, such as check your blood glucose level or automatically give you additional insulin when you eat? Are you already on multiple injections? Many programs require that you become familiar with using a long-acting/rapid-acting insulin regimen before starting a pump.
A good educator will make sure you’re up to speed on the basics of using insulin and controlling your diabetes before giving you the go-ahead to order a pump. Your pump educator should also be able to tell you about all of the different pumps available, the cost of pumping, and so on. The Joslin Diabetes Center covers those areas in a class that meets even before an individual pre-pump assessment takes place.
Joslin also requires a dilated eye exam along with a letter signed by an ophthalmologist within six months of a pump start. The reason? “If you bring your blood glucose levels into control very quickly, it can damage your eyes,” says Chalmers.
Some places, such as Indiana University, will let you take a pump for a “test drive” (without insulin in it) so you can see what it’s like to be hooked up 24/7 before you make the decision to buy your own pump.
The bottom line is that a good pump trainer wants you to be a successful pump user from the beginning. “We’ll make sure their diabetes management skills are at a level that makes pumping a good idea,” says Such. “If not, we’ll do as many education visits as needed. It could be one visit or several visits. We want them in fairly stable, decent control before we start them on a pump.”
Pump management and troubleshooting
Now you’re getting down to the nitty-gritty. Your insurance company has agreed to cover a pump or you’ve decided to buy one on your own and it’s been delivered to your house. You’ve made the appointment for your pump start and have been pushing buttons and watching the video or DVD provided by your pump company. Or perhaps not. Some people do, while others come to their first pump training appointment with their pumps and supplies in an unopened box.
At any rate, you’re going to be pushing buttons at this session (and it will be a long one — likely about four hours) as you learn how to program and operate the pump. You’re also likely to go through a lot of trouble-shooting and problem-solving scenarios. What happens if your blood glucose is over a certain number more than twice in a row? Why should you not change your infusion set at bedtime? What if there’s a bubble in your tubing? What if your pump stops pumping? What do all of those alarms mean, and what do you do when they sound?
One thing likely to be emphasized is that an insulin pump uses rapid-acting insulin only. Therefore, if insulin delivery is stopped for any reason — from a bent cannula to your cat chewing through the tubing — there is a high risk of developing diabetic ketoacidosis, because there is no long-acting insulin in your system.
Toward the end of the session, you may be inserting your first infusion set, after filling the pump reservoir with either insulin or saline. A saline trial allows you to get used to wearing and operating a pump without the fear of making a mistake with insulin. During a saline trial, you’ll continue taking your injections but will also operate the pump as though it has insulin in it. You’ll also be told to change infusion sets two or three times before “going live” on insulin.
Finally! The day has arrived! You’re about to start pumping insulin. You’ll meet with your trainer to fill ’er up with insulin for the first time and ask all of those questions you didn’t previously know to ask.
Not only will you be physically tethered to an insulin pump, however; you’ll also be invisibly tethered to your trainer or pump doctor as well, as he works to help you set basal rates. You will probably begin with one basal rate, but that is likely to change as you communicate daily with your trainer and as your body’s own patterns — particularly your blood glucose levels — are studied to determine where changes should be made. You’re likely to be asked to fast at certain times of the day so that basal rates can more easily be determined. And you will no doubt be doing lots of blood glucose monitoring.
The AADE’s position statement recommends that “a health-care professional…knowledgeable about pump treatment…be available 24 hours a day to assist the individual…” The center or office where you receive your pump training should give you a list of phone numbers to call at any time of the day or night where somebody is available to help you with emergencies or with situations that may concern you.
Now you’re pumping. What more is there to know? Plenty. “I don’t think you can sit someone down and train him in one or two sessions,” says Michael Robinton, executive director of the not-for-profit Insulin Pumpers organization. “Unless they are very proactive, it is tough to learn to count carbohydrates, set basal rates, bolus rates, etc. And it is an overwhelming amount of material to absorb quickly.”
The follow-up session with your trainer is intended to take you beyond the basics of pumping and into the finer nuances of your pump’s capabilities. It’s at this meeting, Chalmers says, “when people have a lot of really good questions.”
And, adds Ponder, “The magic is often in the follow-through. I feel the trainer needs to reassess the student three or six months post-pump start to see what is retained and then to add advanced pumping skills to the repertoire.” He also would like to see pump users attend a class or individual session with a pump trainer when they upgrade to a pump with new or more features.
Finding good training
I know, I know. You have your pump and you want to start right now. But operating a “portable pancreas” isn’t easy, and for optimal control, good training is a must.
Where do you find good training? If your pump is prescribed by a doctor whose clinic has a formal pump-training program with qualified health-care professionals, it probably isn’t a problem. Like Joslin or Indiana University, training protocols are likely to have been formulated.
If not? The AADE suggests asking your pump company if it knows of a clinic or a certified diabetes educator who offers pump training in your area. Chalmers points out that pump trainers can be nurses, dietitians, exercise physiologists, pharmacists, or any other medical professional eligible to take the certified diabetes educator exam. (Those eligible include clinical psychologists, occupational therapists, optometrists, physical therapists, physicians [MD or DO], physician assistants, and podiatrists, as well as anyone with a master’s degree in the area of nutrition, social work, exercise physiology, health education, or certain areas of study in public health.)
You can also get some names from an online support group such as www.insulin-pumpers.org even before you begin pumping. Ask the membership if anybody in your area knows of a good pump training program. With 4,600 members in this group, an experienced pump user is sure to live in your area and know of somebody you can go to for training. The Web site also has a list of “pump docs” recommended by members.
Pump companies also offer some training, but the quality of training can vary, and a Certified Pump Trainer (CPT) designation could mean nothing more than “this person is certified as knowing how to operate this pump.” The person may not know much about controlling diabetes.
The American Association of Clinical Endocrinologists is working to increase the number of pump-savvy health-care providers through a postgraduate course in intensified insulin therapy. “We need more physicians with a knowledge base for prescribing dosages for the pump,” says Lois Jovanovic, MD, medical director of the Sansum Medical Research Foundation in Santa Barbara, California. “There are so many variables involved in getting dosages right and making it safe. You can be in terrible control on a pump if you don’t know how basals change or how to compensate for increased needs or decreased needs.”
In the meantime, make sure you don’t end up in terrible control by using the information in this article to create a list of questions for potential pump trainers. Interview them to see if they offer all the services you need, from instruction on simply operating the pump to help with setting basal rates and bolus doses, figuring out insulin-to-carbohydrate ratios, and more. There is good pump training out there, so don’t settle for less.