Spirit of Oley Moves Clinicians, Consumers at 1998 ASPEN Clinical Congress
This January, board members, staff and consumers from the Oley Foundation traveled to Orlando, Florida, to share the spirit of Oley with homePEN consumers and clinicians at the 22nd Annual Clinical Congress of the American Society for Parenteral and Enteral Nutrition (ASPEN). Oley activities included talks given by Dr. James Scolapio and Dr. Lyn Howard on long term TPN consumer issues; a presentation by consumers that explained to nutrition support clinicians what it’s like to live with homePEN; as well as an Oley board retreat intended to shape the Foundation’s goals for the next three years. Highlights from these events are discussed below.
Plans for the Oley Foundation’s Future
The Oley Foundation board members and staff spent a great deal of energy forging a plan for the Foundation that will help Oley grow in outreach and services as we move into the next millennium. Highlights from the retreat given below include a revised mission statement and goals for the Foundation. Many thanks to all who participated. We could not have done it without your creativity and dedication!
Revised Oley Mission:
The Oley Foundation for Home Parenteral and Enteral Nutrition (HomePEN) is a national organization dedicated to enriching the lives of those requiring home nutrition support.
- To secure a sound financial base to support on-going programs.
- To strengthen the homePEN community through an organized and trained volunteer network.
- To ensure a strong educational component for homePEN consumers and clinicians.
- To reinstate a research program.
Growth Hormone & Glutamine: What Role, If Any, Do They Play in Gut Adaptation?
Sunday, January 18, Dr. James Scolapio of the Mayo Clinic in Jacksonville, FL, spoke to a gathering of homePEN consumers and clinicians in Orlando, FL, on the topic of growth hormone, glutamine and gut adaptation. He first described a study by researchers at Harvard Medical School which examined whether patients with long standing short bowel syndrome (on average 6 years) could experience further bowel adaptation if given growth hormone, glutamine and a low fat, high complex carbohydrate diet. Patients who participated in the Harvard study were also given Imodium, Ca and H2 blockers which slow gut motility and decrease secretions. After a 28-day treatment period, the Harvard study patients showed improvement in fluid, electrolyte and substrate absorption. At the end of the treatment period, 57 percent were able to come off parenteral nutrition and one year later, two-thirds of these patients were still off intravenous support. (The program at Nutritional Restart Center in Hopkinton, MA, is based on this study.)
The Harvard report raised many questions about the contribution of the different treatment elements and the extent to which the improved bowel function reflected on-going adaptation versus tighter medical management. Seeking to clarify these issues, Dr. Scolapio and a team of researchers from the Mayo Clinics in Jacksonville, FL, and Rochester, MN, published a study on the “Effect of Growth Hormone, Glutamine and Diet Adaptation in Short-Bowel Syndrome: A Randomized, Controlled Study” in Gastroenterology. The Mayo study was similar to the Harvard study but had a few important differences. The Mayo study was controlled and the patients were randomized to an active treatment arm and a placebo arm. A second noteworthy difference between the two studies is that most of the participants in the Harvard study had at least a partially functional colon; whereas only two of the eight patients in the Mayo study had some colon.
The Mayo team could not duplicate many of the results published by the Harvard research team. The Mayo team did confirm a mild, but significant increase in the participant’s absorption of Na+ and K+, as well as a decrease in gastric emptying and slower small bowel transit time. On the other hand, the Mayo team found no change in stool volumes, no increase in macro-nutrient absorption and no significant adaptation of the participants’ intestines. None of the Mayo patients were able to reduce or discontinue their use of TPN.
The Mayo researchers concluded that the differences in their research results may be due to patient characteristics. Specifically they speculate that the colon may significantly affect the participant’s ability to absorb enough calories from their oral diet. Mayo researchers also wondered if the referral process could have biased the Harvard study results. Participants in the Harvard study were referred from outside the institution, thus it was not known for sure how ‘dependent’ they were on TPN before the study; whereas participants in the Mayo study had been with the Mayo Clinic for many years and had a proven need for TPN. The Mayo researchers questioned the role that the antimotility drugs and tighter diet may have played in affecting the outcome of the research. The Mayo researchers suspect the dietary treatment played a more important role than the growth hormone and glutamine in reducing the participant’s dependency on TPN.
The Oley Foundation is grateful to Dr. Scolapio for sharing his insight on a topic of great interest to many TPN consumers.
25 Years with HPN: What Have We Learned? What Are Our Concerns?
Following Dr. Scolapio’s talk, Dr. Lyn Howard, Medical & Research Director of the Oley Foundation and Head of the Division of Clinical Nutrition at Albany Medical Center, gave her perspective on TPN use over the past quarter of a century: “What are some of the things we’ve learned, and what are some of the things we’re looking at?”
Twenty five years ago, there were only a handful of institutions using parenteral nutrition, mostly for patients with severe short bowel syndrome. Many of these patients experienced excellent rehabilitation on this therapy. Once Medicare established reimbursement for the therapy in 1976, use of HPN therapy expanded enormously. In 1992, approximately 40,000 persons were on HPN in the United States.
Initially the medical community had used TPN in patients with a relatively good prognosis; their gut had failed, but otherwise their health was fine. But over time TPN was used more and more for patients with short term outcomes, such as cancer and AIDs. The appropriateness of using HPN for short term outcome is not clear; the decision has to be very individualized, and requires participation by the patient and their family since typically family support is needed to help patients infuse at home.
Over the years we’ve learned that TPN is a relatively safe therapy. The average adult home patient experiences a septic complication only once every 12 to 30 months depending upon their diagnosis and age. Infection rates in children tend to be higher. The infection rate for out-patients using TPN is much lower than for in-hospital patients. This is probably because the home patient has greater vested interest in the care of their central line and their catheter care is more consistent.
Current information from the Center for Disease Control suggests that most catheter infections begin from a contaminant inside the patient’s catheter or port. The exception is the first week or two after the catheter is inserted; before the skin is healed, germs can migrate from the skin down the outside of the catheter and into the patient’s bloodstream. Knowing that internal contamination is a major source of infection, and having discovered a build up of sludge in ports removed from patients, physicians are less comfortable with the use of ports than in past years. There are no certain answers yet, but the build up of sludge in ports could be reduced by improving circulation within the port as some newer models are designed to do.
Two years ago, the Food and Drug Administration reported two deaths caused by calcium and phosphate crystals which had precipitated from TPN solutions and lodged in the arteries of the infusers’ lungs. Investigators believe these minerals precipitated from the TPN solution because of a change in how TPN formulas were made. First, the base amino acid solution may have been more alkaline. Second the calcium and phosphate may have been added before the full volume of the base solution was in the bag, causing a temporary high concentration of these minerals which led to precipitation. A third factor may have been the non-continuous mixing that occurs when automated machines are used to make TPN solutions. This issue may be especially important to young lifeliners, since children tend to receive higher doses of calcium and phosphate in their TPN to accommodate their higher needs for bone growth.
Recently, several physicians from around the country have noticed an increase in the number of adult TPN patients developing liver failure. Previously TPN liver cholestasis was seen as a side-effect of TPN chiefly in children and was relatively rare in adults. The reason for this change is not understood, and is obviously worrisome. A number of physicians with large HPN programs will be collaborating to research this issue.
We appreciate Dr. Howard sharing her 25 years experience with managing TPN patients with us.
Nutrition Support From the Consumer Perspective
On Monday, January 19, a panel of homePEN consumers spoke on behalf of the Oley Foundation to a crowd of nutrition support physicians, nurses, dietitians, and industry representatives. Panelists included June Bodden from Clearwater, FL, Steve Swensen from Hoosick Falls, NY, and Tracy Phelan from Eustis, FL.
Ms. Bodden spoke eloquently of the pain and trauma she suffered from Crohn’s disease, related surgeries and her eventual dependence on TPN. Clinicians and consumers in the audience were visibly moved as she explained what it was like to experience life-threatening events precipitated by the disease process as well as clinical errors.
Now that the condition of her health has basically stabilized, Ms. Bodden explained that her worst stress is financial issues. In the mid-80’s her health care policy premium tripled to an unaffordable $1900 per month over a three-year period. When she was notified that her next month’s bill would be $3680, she was forced to let the policy lapse. Meanwhile physical conditions forced her to stop working. It took her 2-1/2 years to get on Medicare. Fortunately, her homecare company covered her expenses for 16 months when she had no insurance coverage. Once she finally had coverage, it took her three years of negotiating to get reimbursed for her ostomy supplies. The struggle continues as the state of Florida requires Ms. Bodden to requalify each month for her medical benefits which can take hours of paperwork and phone calls. Despite the physical and financial challenges, Ms. Bodden leads an active life which includes reaching out to fellow homePEN consumers all over Florida. She reminded clinician members of the audience how important Oley has been to her over the years and encouraged them to get their patients involved.
Next Steve Swensen told what is was like to be the father of Matthew, age 15, who lost 90 percent of his small intestine and 50 percent of his colon at age five and has been on TPN seven nights a week ever since. “Initially when my wife and I heard of TPN, it seemed to be a blessing... [After the surgery] we thought Matt would die,” he recalled. “Over the years, we’ve come to see TPN as a necessary evil.” He explained that when your child is on TPN you cannot minimize the problems, the disruptions to family life, and the fear of making a mistake with the therapy. In addition, there are the on-going worries about the potential side effects from TPN such as bone disease and liver dysfunction.
Mr. Swensen said he coped with the stress best by educating himself about the therapy, living in the present and seeking out sources of support. He emphasized how important it was to be an informed parent, and that his main sources of information were the hospital and homecare company where Matt receives his care, as well as the Oley Foundation.
Mr. Swensen told clinicians in the audience that support from the medical community has been good for his family on the whole, with two exceptions. First, he described how frightening it is for a parent to see a hospital clinician accessing your child’s lifeline without taking the rigorous precautions taken at home. He said this is a common occurrence when Matt is hospitalized. Second, he feels that Matt is treated too much as a commodity by the health care industry. In his experience, providers pay too much attention to the financial aspect of Matt’s care rather than the social and economic burdens of Matt and his family.
The third panelist, Tracy Phelan, gave the perspective of the long term consumer. He has been on TPN for 21 years. At age 13 he was diagnosed with Crohn’s disease, and underwent so many surgeries in the next six years, that his physician used to joke with him about putting a zipper in his abdomen for easier access. Eventually his intestine perforated, became gangrenous and Mr. Phelan ended up with a total colectomy and short bowel syndrome.
“Twenty years ago, they didn’t know much about TPN,” he recalled. “I didn’t even have a real catheter at first.” During his hospital stay he spent two hours a day in the pharmacy learning how to mix his own TPN solutions. After he was released, he set up shop down in his parent’s basement. It was a tough time in his life. He was young and rejected what he was going through. “I’d often mix my solutions after a night out drinking with friends and then hook up,” he said. Fortunately, things eventually turned around. Mr. Phelan found a terrific physician, Dr. Richard Fleming, and found a homecare company to supply his TPN solution. As he remembers, “It was the greatest thing since sliced bread.” He also attended his first Oley conference in 1994, where he met many fellow consumers and subsequently didn’t feel so alienated. He’s stayed involved with Oley ever since. He describes his current challenges as avoiding septic events and retaining IV access.
The Oley Foundation is grateful for the panelists’ participation. Their insight is invaluable to homePEN professionals who can use this information to better serve their consumers.