Home parenteral nutrition: a transatlantic view

ClinicalNutrition (1999) 18(3): 131-133 O 1999 Harcourt Brace & Co. Ltd

EDITORIAL

Home parenteral nutrition: a transatlantic view

parity presumably reflects large differences in philosophic and economic viewpoints. To truly assess the merits of a new therapy it is desirable to know not only survival and duration on therapy and the diagnoses for which it is being used, but also to have information on the frequency of complications especially those that result in rehospitalization. This was looked at in the North American survey (3) but not in the current European survey (6). Assessing complications was perhaps beyond the work limit of this several country group. The most striking difference between Europe and the USA is in the amount of HPN being used. In the USA, HPN prevalence appears to be much higher than European prevalence. This may partly be an abberation due to the different way prevalence is assessed on the two shores. In Europe, prevalence is measured as 'point' or one day prevalence, thus on 1 January 1998, in seven countries where 80% or more of HPN activity was known, prevalence varied from 12.7 per million population in Denmark, to three to four per million in the UK, Netherlands. France and Belgium, to less than two per million in Poland and Spain. In contrast, in the USA, prevalence was measured as 'yearly' prevalence and no data are available after 1992 (3). In that year there were 120 HPN patients per million population. The difference between °point' and 'yearly' prevalence methodology explains a great deal of this transatlantic disparity. On both sides of the ocean, HPN use for several-months only, describes the majority of HPN patients. This is true in part because cancer has become the leading single diagnosis, but also, as noted by van Gossum et al. (6), because only 44% of Crohn's patients and 68% of ischemic bowel disease patients continued on HPN for longer than 6-,-12 months. In the USA, 25% of Crohn's and 48% of ischemic bowel disease patients remained on HPN after 1 year (3). This implies that prevalence measured over 1 year includes three or four times the number of patients seen on any 1 day and would equate to a USA 'point' prevalence of 30-40 HPN patients per million population, a frequency that is three to t0 times the European usage rate. This degree of higher usage seems irrefutable and may be explained by economic reasons peculiar to the USA, where there is no unified national health system, and hence components of the system stand to benefit by shifts in health care costs. Thus, hospitals financially benefit from rapid patient discharges even while this throws a burgeoning demand and cost on home care services. With HPN, a shift to home from hospital produces an overall saving to direct health care costs of about 50%. This

In the past 30 years, home parenteral nutrition (HPN) has become an established therapy in most medically advanced countries (1-4). Because it is one of the more expensive ambulatory therapies ($75-85 000 per year for the direct costs on both sides of the Atlantic (3, 5)) monitoring HPN's clinical effectiveness and determining the diseases in which HPN is appropriate are important tasks. The second European multicenter survey is published in this issue and it represents the sterling effort of 75 contributors (6). In most respects the demographic picture emerging for HPN use is similar on both sides of the Atlantic. HPN patients with Crohn's disease have the best outcome (96% survival on therapy in the first year (3, 6)), followed closely by other chronic but stable disorders (ischemic bowel disease, motility disorders, radiation enteritis). Conversely, patients with cancer su~ive on therapy for an average of only 4 months. This poor outcome reflects the fact that most of these cancer patients have bowel obstruction and rapidly progressing disease, yet are judged clinically stable enough to live the last few months at home. This dire statistic obscures the fact that some patients with more indolent tumors, such as metastatic ovarian cancer, may survive 2 years or more, and a few cancer patients, such as those undergoing the rigors of bone marrow transplant, may achieve an ultimate cure (7). The disease spectrum of patients receiving HPN is also very similar on both sides of the Atlantic. Historically, HPN started as rehabilitation for relatively stable disorders such as extreme short bowel patients with Crohn's disease or meserteric infarction (8-11). Several of these early HPN patients have now survived over 20 years on therapy (12). Once the safety of HPN was established, the therapy was increasingly used in patients with shorter life expectancy. Thus, in Europe, Crohn's disease and ischemic bowel disease now account fox"only 19% and 15% of HPN diagnoses and in the USA for 1 !% and 6% respectively. It should be noted that the European survey covers persons 16 years and older and the USA survey includes all age groups, 22% of whom are children and therefore congenital bowel disease is a sizeable category reducing the overall proportion of certain adult disorders. Cancer has become the largest single category of HPN patients, accounting for about 40% on both sides of the Atlantic. In Europe, however, there are large inter country differences in the use of HPN in cancer patients and in the 1997 survey it varied from 80% in Sweden, to 60% in the Netherlands, 27% in France and 5% in the UK (6). This dis131

132 HOME PARENTERAL NUTRITION

is true on both sides of the Atlantic (13, 14). Of course this saving may be substantially offset by home care costs incurred by both community nurses and the patient's family. A family member may lose time from work driving his or her HPN relative to appointments and may even give up a job to more completely supervise a child or older relative. These more subtle costs have not been assessed for this therapy. In the USA, the economic imperative to discharge hospitalized patients requiring parenteral nutrition has led to an interesting historic volte face. In the early years, initiating HPN required special negotiation between the hospital nutrition support physician and the patient's third party payer. In the present environment, insurance companies and hospitals alike want all parenteral nutrition dependent patients home whenever possible. Thus, it becomes the task of the nutrition support professional to protect patients from this economic pressure and hel p them and their families decide what they can truly manage at home and what they cannot. Another more mercantile factor that may have increased HPN use in the USA in the late 1980s was management fees. This uncomfortable phase perhaps deserves a brief airing with our European counterparts. Management fees had a certain initial legitimacy. In the USA, most physician salaries, in private practice and academic institutions alike are directly lifiked to clinical revenue. Until the early 1990s, when Medicare developed a new reimbursement mechanism for physicians spending 30 rain or more a month supervising complex offsite patients (care plan oversight services (16)) there was no established compensation mechanism for time spent on phone calls to patients and their caregivers, for ordering and checking tests or adjusting an infusion formula. On the other hand, if the patient remained in hospital, clinical management at the bedside was routinely compensated. In the early days of home management, this lack of mechanism for physician compensation created a significant deterrent to home discharge of complex patients. During these same years the pharmaceutical industry was well compensated for providing home infusion equipment and solutions to HPN patients. To expand HPN use the pharmaceutical industry sought ways to compensate physicians referring and managing HPN patients. Mangement fees were offered to physicians in return for proper documentation of their clinical time spent. Unfortunately, management fees rapidly became a referral incentive and transformed into a marketing device. This ultimately led to the publication of a fraud alert by the Surgeon General in 1989 (17) and subsequent passage of laws in most states prohibiting any financial incentive for patient referrals in any areas of medical care (18). This sad chapter in home infusion therapy in the USA may have temporarily increased an inappropriate use of HPN, but it does not explain the doubling of USA useage between 1989 and 1992 (3). It should, however, serve as a cautionary tale for other health care systems open to the influence of unquiet monetary gain. Beyond all this, what are the big questions that remain

unanswered about HPN therapy in Europe and North America? First, as stressed by Van Gossum et al., we need a more in depth understanding about the use of HPN in shortterm patients, particularly those with cancer and AIDS. The European data show a reduction in HPN AIDS patients from 4% in 1993 to 2% in 1997, leading the authors to speculate on the impact of improved AIDS outcome following the introduction of protease inhibitors (6). For the larger category of cancer patients, the most difficult issue is recognizing which patients have entered the terminal phase of their illness, when only simple supportive care is appropriate, versus those who can survive four to six months, usually preferring to spend such time at home. Obviously, many factors bare on this equation and currently there are no simple universal rules. Each patient and their family needs realistic information about what is involved and what to expecL In the USA, the rules governing HPN use have been chiefly laid out by Medicare, the largest single payer. Initially, tube feeding was for patients who had upper gastrointestinal disorders and could not swallow, while parenteral feeding was for patients with small bowel disease and severe malabsorption. In both instances the artificial feeding was intended to provide complete nutrition support and the term 'supplemental' support was an anathema to Medicare. However, over the years, Medicare has understood oral food intake is critical for stimulating bowel adaption and may be the most important deterrent to parenteral nutrition liver disease. In addition, many short bowel patients ultimately require only parenteral fluid, electrolytes, B 12 and fat soluble vitamins to sustain nutritional balance; in fact some graduate to overnight enteral tube feeds or even off artificial feeding altogether (19). In moving away from the requirement of total nutrition support to partial nutrition support this has led insiduously from the simple concept of support needed to keep an individual alive to the slippery slope of support needed to provide good health and strength. We can all appreciate the endless ramifications of opening this floodgate, especially with an expensive and not totally safe therapy. Perhaps, in reality the best guardian of this difficult line are patients themselves. Several quality of life studies have been undertaken in the HPN population (13, 14, 20, 21) showing improved well being, especially when patients and famililies are affiliated with a national support and education program (22). HPN is an intrusive and time - consuming therapy only acceptable to patients when the they truly experience benefit. Thus, as long as patients themselves take the main responsibility for their nutrient infusion, excessive or inappropriate use seems unlikely. In this same vein, parenteral nutrition delivered outside the hospital but by professionals, as in skilled nursing facilities or hemodialysis centers, blunts the patients judgment of value and therefore other standards of appropriateness must be stringently upheld (23). Lyn Howard, MB (Oxon) FRCP

Professor of Medicine, Associate Professor of Pediatrics, Albany Medical College, MC 23, Albany, NY 12208, USA

CLINICAL NUTRITION

References i. Elia M. An international perspective on artificial nutritional support in the community. Lancet 1995; 345:1345-1349 2. Van Gossum A, Espen-Han Group. Home parenteral nutrition in adults: A Multicentre Survey in Europe in 1993. Clin Nutr 1996; 15:53-59 3. Howard L, Ament M, Fleming C R et al. Current use and clinical outcome of home parenteral and enteral nutrition therapies in the United States. Gastroenterology 1995; 109:355-365 4. Takagi Y, Okada A, Sato T et al. Report on the first annual survey of home parenteral nutrition in Japan. Surg Today Jpn J Surg 1995; 25: 193-201 5. Richards D M, lrving M H. Cost utility analysis of home parenteral nutrition. BrJ Surg 1996; 83:1226M229 6. Van Gossum A, Bakker H, Bozzetti F et al. Home Parenteral Nutrition in Adults: An European Multicentre Survey in 1997. Clin Nutr 1999; 18:135-140 7. Howard L: Home parenteral and enteral nutrition in cancer patients. Cancer 1993; 72:3531-3541 8. Fleming C R, McGiil D B, and Berkner S. Home parenteral nutrition as primary therapy in patients with extensive Crohn's disease of the bowel and mallmlaition. Gastroenterology 1977i 73:1077-1081 9. Jeejeebhoy K N, Zohrab W J, Langer B, et al. Total parenteral nutrition at home for 23 months, without complication and with good rehabilitation. Gastroenterology 1973; 65:811-820 10. O'Hanrahan T, lrving M H, The role of home parenteral nutrition in ~ e management of intestinal failure - report of 400 cases. Clinical Nutrition 1992; 11:331-336 11. Messing B, Lemann M, Landais Pet al. Prognosis of patients with

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non-malignant chronic intestinal failure receiving long-term home parenteral nutrition. Gastroenterology 1995; 108: 1005-1010 Editolial. Oley Foundation celebrates 20 years on TPN. Lifeline Letter May-June, 1995. Oley Foundation, Albany, NY Richards D M. Irving MH. Assessing the quality of life of patients with intestinal failure on home parentera! nutrition. Gut 1997: 40: 218-222 Detsky A, McLaughlin J R, Abrams H et aL A cost-utility analysis of the HPN program at Toronto General Hospital: 1970-1982. JPEN 1986: 15:384 Curtas S, Hariri R, Steiger E. Case management in home total parenteral nutrition: a cost identification analysis. JPEN 1998; 20: 113-119

16. Am Med Assoc: Current Procedural Terminology, 1999, page 32:CPT codes 99374. 99375 17. Kusserow K P. Fraud alert, joint venture arrangement. Baltimore: Office of Inspector General, OIG-89-04 (US GRP: 0-235-622; 1989) 18. Burrows W P, Fernandez H. Patient referrals. Health iaw update. Bond, Schoeneck and King, 1992 19. Carbonnel F, Cosnes J. Chevret S et al. The role of anatomic factors in nutritional autonomy after extensive small bowel resection. J Parenter Enteral Nutr 1996; 20:275-280 20. Smith C E. Quality of life in long term total paremeral nutrition patients and their family caregivers. JPEN 1993; 17:501-506 21. Ella M. Mickelwright A. Shaffer Jet al. The 1997 Annual report of the British Artifical Nutrition Survey (BANS) 22. Smith C E, Howard L, Curtas S. Does affiliation with a national support and education organization improve HPN outcomes? In press 23. Foulks C J. An evidence based evaluation of intraclialytic parenteral nutrition. Am J Kidney Dis 1999; 33:170-171