- Meet Consumers/Patients
|Research: HomePN Research Prize|
The Oley Foundation is pleased to offer the Nutrishare HomePN Research Prize. Sponsored by Nutrishare, Inc., the prize was established to encourage clinical research focused on improving the quality of life for home parenteral nutrition (homePN) consumers.
The PrizeEach year, the Oley Foundation will award $2,500 for each of the top three clinical research papers best aligned with Oley’s mission to enhance the lives of homePN patients and that generate interest among homePN patients and improve their well-being. The paper/abstract must have been accepted for poster or oral presentation, or publication by a respected, relevant professional association such as ASPEN, ESPEN, INS, AGA, etc. between July of the previous year and March of the current year.
A portion of each prize ($1,000) will be used to cover travel expenses to bring the winning recipients to the Annual Oley Consumer/Clinician Conference to present their research.
Selecting the Winners:
Clinical research will be awarded points for each of the following criteria
Awarding the Prize
Prizes will be awarded at the Annual Oley Consumer/Clinician Conference. Winners will share their research during the conference as well.
Applicant must submit the following to the Oley Foundation
1. Cover letter with name, institution, city, state, daytime phone, email, research title, where presented, when presented.
2. Attach a copy of the paper, poster or abstract.
3. Please submit research prize application to Nutrishare HomePN Research Prize, c/o The Oley Foundation, 43 New Scotland Ave., MC 28, Albany Medical Center, Albany, NY 12208; Andrea Guidi; or fax (518) 262-5528.
Applications Due March 28, 2016
2016 HomePN Research Prize Winners
To Swim or Not to Swim: Survey on Swimming Practices with a Central Venous Catheter
Quality of life issues are important to those on long-term home parenteral nutrition (HPN). One issue of concern is swimming while having a central venous catheter (CVC) in place. There is very limited published research and a lack of evidence-based recommendations in this area. As a result, a survey was designed to identify attitudes and practices of HPN consumers surrounding swimming with a CVC.
For this study, an anonymous electronic survey was distributed to the HPN community via social media. The survey consisted of eleven questions about swimming with a CVC and specific practices of CVC care. The survey also asked about how aware the consumer’s medical team was of the patient’s swimming practices.
One hundred eighty-two consumers with a CVC responded. Of these, 158 (87%) reported that swimming was important to them and 101 (55%) reported actually swimming with a CVC. Of the swimmers, 71 reported swimming in a pool; 24 reported swimming in the ocean; 5 reported swimming in a lake; and 11 reported swimming in all three.
As for line care, 62 (61%) of the swimmers wore CVC protective covering during swimming; 16 of these wore wetsuits. Thirty-six (36%) reported not wearing any protective covering. Two did not respond to the question.
Sixty-one (60%) of the swimmers reported changing their dressing immediately after swimming; 36 (36%) reported changing the dressing as needed; 2 did not respond to the question.
Ninety-four (93%) of the swimmers reported having zero CVC infections after swimming; 6 (6%) reported one CVC infection after swimming; 1 (1%) reported two CVC infections after swimming. Of those reporting infections, all but 1 reported wearing a CVC protective covering and 6 reported changing their CVC dressing immediately after swimming.
Of the 101 swimmers, 63 (62%) reported that their medical team knew they swam, with 43 (68%) of these informed teams allowing swimming and 20 (32%) of these teams prohibiting swimming. Thirty-eight (38%) swimmers reported that their team was not aware of the activity.
The study concluded that consumer practice of swimming with a CVC varies by swimming location, care of the CVC during and after the activity, and notification of the medical team regarding swimming practice. The ability to swim was reported as being an important con- tribution to quality of life in the HPN consumer. Further research to explore documented CVC infections relative to swimming practice will assist in development of standard practice.
Jasmeet S. Mokha, MD, MPH
Connecticut Children's Medical Center; Hartford, CT
Effects of Ethanol Lock Therapy on Central Line Infections and Mechanical Problems in Children with Intestinal Failure
Although use of 70% ethanol lock therapy (ELT) has been shown to decrease the rate of catheter-related bloodstream infections (CRBSIs) in patients with intestinal failure and central venous catheters (CVCs), concerns have been raised about its association with higher rates of mechanical problems and CVC replacements (CVC-Rs). We sought to compare the rates of CRBSI, mechanical problems, and CVC-Rs in a cohort of pediatric patients with intestinal failure, with and without ELT (ELT+ and ELT-, respectively).
For this study, data was collected in a retrospective chart review from February 2007 to May 2014. Mann-Whitney and Wilcoxon signed-rank tests were used to compare nonparametric and paired data, respectively.
It was found that twenty-nine children had 9,033 catheter days (CDs). The ELT+ group (vs ELT-) had lower rate of infection and significantly fewer CVC-Rs due to infection, but significantly more mechanical events and related CVC-Rs with significantly shorter mean CVC survival. In thirteen children who had a pre-ELT and post-ELT period, ELT was associated with a decrease in the rate of CVC-Rs due to infection (0.36 vs 4.74/1000 CDs, P=.046) and an increase in the rate of CVC-Rs due to mechanical problems (5.05 vs 0/1000 CDs, P=.018).
The study concluded that while ELT+ is associated with a lower rate of CRBSIs and related CVC-Rs, it is also associated with higher rates of mechanical problems and related CVC-Rs. In addition to investigating the ideal concentration, duration, and timing of ELT to preserve the integrity of the CVC, alternatives to exclusively ethanol-based lock solutions should be developed.
Marianne Opilla, RN, BSN, CNSC
Nutrishare, Inc., Elk Grove, California
Central Venous Catheter Life in Very Long-Term Home Parenteral Nutrition Patients
Patients with debilitating gastrointestinal conditions may require HPN for a lifetime. HPN is infused through a central venous catheter (CVC). HPN complications associated with the CVC often result in removal and replacement of the device, which, over time, may lead to devastating loss of venous access sites. The CVC is considered a lifeline, and maintaining a trouble-free CVC is an important goal for HPN patients.
This study examined a group of very long-term HPN patients and reports their longest catheter life history. The study used a retrospec- tive chart review for CVC history completed for adult and pediatric HPN patients from one home infusion pharmacy. The data collection included age, gender, diagnosis for HPN, CVC type, and the longest number of days a CVC remained in place for each patient.
Patients on HPN for three years or more, and with a CVC in place for two years or more, were included in the cohort. A total of 103 patients were identified: 91 adults and 12 pediatric (<18 years). Females represented 60% and the average age was 49 years (range 9–90 years). The primary diagnosis was short bowel syndrome (70%), followed by chronic intestinal pseudo-obstruction (27%) and radiation enteritis (3%). The total HPN years for all patients was 1,995, with an average of about 19 years (range 4–39 years) on HPN.
The combined total CVC days for each patient’s longest lasting CVC were 291,744 days, with an average of 2,832 days/7.7 years for the entire group. Adults had 270,330 CVC days (range 832–7,490 days), averaging 2,970 days/8 years. Pediatric patients had 21,414 CVC days (range 813–4,686 days), averaging 1,784 days/4.88 years.
There were 81 tunneled CVCs (251,115 days). The majority of the tunneled CVCs were single lumen, open-ended, silicone devices (88%). There were 16 implanted infusion ports (31,236 days) and 6 peripherally inserted central catheters (9,393 days).
Patients were further divided into three groups based on CVC years. Twelve tunneled CVCs lasted 15+ years; 13 tunneled CVCs and 1 implanted infusion port lasted 10–15 years; and 27 tunneled CVCs, 6 implanted ports, and 1 peripherally inserted central catheter (PICC) lasted 5–10 years. The 25 tunneled CVCs lasting 10 years or greater were all single lumen, open-ended, silicone devices.
It was concluded from this study that in this cohort of adult and pediatric HPN patients, CVCs could be safely maintained for many years without serious complications that require removal and replace- ment. Tunneled CVCs, particularly the single lumen, open-ended, silicone design, last significantly longer than implanted ports and PICCs, and should strongly be considered for very long-term HPN patients. Pediatric CVC complication rates are generally reported as higher than adult’s, but in this group the pediatric patients experienced good CVC longevity. Through education on CVC care and clinical support, a long-term HPN patient can successfully preserve his or her lifeline for many years.
2015 HomePN Research Prize Winners
Mental Health Support of Consumers and Caregivers on Home Parenteral and Enteral (HPEN) Therapy (Presentation)
HPEN consumers and their caregivers frequently experience an emotional toll from their diagnosis as well as their medical therapy. Many also note a lack of support within the medical community. Prior research has reported incidence of anxiety and depression among those with chronic medical conditions as well as among those on HPEN. For this study, the researchers created an online survey and distributed a link to the survey to HPEN consumers and caregivers via social media. Respondents were asked to report their experience with symptoms such as grief, anxiety, fatigue, appetite changes, sleep disruptions and inability to cope, as well as duration of symptoms. They were also asked if they were provided mental health support and resources by their medical team, and if they felt that such support should be part of coordinated care.
One hundred eighty-four people responded (65% caregivers, 35% consumers). Of the respondents, 95% felt mental health support should be provided as part of comprehensive care for HPEN consumers; 55% indicated they experienced six or more symptoms that could be indicative of a mental health disorder; 29% indicated their symptoms began at diagnosis and 50% indicated their symptoms have been ongoing throughout their illness; 76% of caregivers and 72% of consumers did not have any type of mental health support offered by their practitioner or clinical team; 53% sought professional help for their symptoms, and of those, 61% were self-referred while 39% were referred by their medical team. Only 33% of respondents reported having a consumer advocate provided by their home infusion company, and of those respondents, 55% received resources from their consumer advocate informing them of the possibility of mental/emotional issues.
The study concluded that symptoms of mental/emotional disorders may be common among HPEN consumers and their caregivers, as suggested by prior research. Further, this, paired with the fact that 76% of caregivers and 72% of consumers did not have mental health support offered to them, indicates a need that is not being met. The researchers note that the data highlights the importance of integrating mental health support into comprehensive care for HPEN consumers and their caregivers, and indicates the importance of offering mental health support and resources throughout treatment and therapy.
Ethan A. Mezoff, MD
Cincinnati Children's Hospital, Ohio
Ethanol Lock Efficacy and Associated Complications in Children with Intestinal Failure (Presentation)
Prophylactic ethanol lock therapy (ELT) reduces central line–associated bloodstream infections (CLABSIs) in children with intestinal failure. However, the risk of associated complications is unclear. For this study, patient demographics, CLABSI events, and line complications for thirty patients on ELT from 2010–2013 were extracted from an intestinal rehabilitation registry. Infection and complication rates when on and off ELT were compared.
The study results are as follows: CLABSIs when on and off ELT were 3.1 and 5.5 per 1000 catheter days, respectively (P < .015). Overall complication rates were similar in both groups. In those patients who experienced a complication, the complication rates on ELT compared with time off ELT were significantly lower (P < .003). Line perforation or breakage rates declined significantly when on ELT, from 1.8 to 1.53 per 1000 catheter days (P < .006). Line occlusion rates also decreased on ELT, from 0.6 to 0.3 per 1000 catheter days (P = .056). Infecting organisms were not different on and off ELT, and patients experienced a similar number of polymicrobial infections on or off therapy. Klebsiella pneumonia was the most common infecting organism in both groups.
The researchers concluded that ELT use reduces both CLABSI and central line complication rates in children with intestinal failure, and that these results underscore the safety and efficacy of ELT use in this population.
Marianne Opilla, RN, CNSC
Nutrishare, Inc., California
For this study, retrospective data on adult home PN patients with tunneled CVCs was collected from one home infusion pharmacy. Data on tunneled CVC days and corresponding CLABSIs was collected for the period January 2005 to December 2013, as well as demographic data and the number of infusion days per week. The minimum number of tunneled CVC days in the study was 730. CLABSI incidents were defined as presence of infection symptoms and positive blood cultures by peripheral and/or CVC sample. Positive blood cultures for the same organism within 30 days were counted as the same infection episode. A total of 108 patients were studied; 68 had blood drawn by PV and 40 had blood drawn from the CVC. The CVC group was further divided into four categories based on the person performing the blood collection: self, clinic/MD staff, home health nurse, or family caregiver. Groups were compared for CLABSI per 1000 CVC days.
The study results are as follows: The average age of the study group was 58 years, 69% were female, 70% had a diagnosis of short bowel syndrome, and 80% infused HPN 6–7 days per week. There were a total of 278,635 tunneled CVC days with 210 infections at an overall CLABSI rate of 0.75/1000 CVC days. The PV group had 118 infections in 181,650 CVC days with a rate of 0.65/1000 days, compared to the CVC group with 92 infections in 96,985 CVC days at 0.95/1000 days. It should be noted that in both groups some patients experienced multiple infections while others remained infection free. Of the CVC group, CLABSI rates per 1000 days based on the person performing the blood collection were as follows: self (13 patients), 0.37 CLABSI/1000 days; clinic/MD office (11 patients), 0.62 CLABSI/1000 days; home health nurse (10 patients), 1.38 CLABSI/1000 days; caregiver (6 patients), 2.57 CLABSI/1000 days.
The researchers concluded that there was a clinically significant increase in CLABSI when blood was drawn from the CVC compared to PV, and of the subset of patients with CVC draws, the group drawing their own blood had the lowest incidence of infection and family caregiver blood draws had the highest. The HPN patient is the guardian of his or her CVC and appears to be the most meticulous with their own care. Patients should carefully scrutinize catheter care techniques when anyone manipulates their CVC, and voice concern when uncomfortable with technique. Ongoing education and review of aseptic technique is vital for HPN patients, health care providers, and family caregivers who work with CVCs. It is recognized that CLABSI is a complex complication and other risk factors may have contributed to this cohort’s infection rate, but this data indicates that blood drawing practices should be part of a total CLABSI incidence assessment for HPN patients. More investigation is needed to identify strategies to reduce CLABSI in the HPN population.
2014 HomePN Research Prize Winners
Katelyn Chopy, MS, RD, LDN
Rhode Island Hospital • Cumberland, RI
A Qualitative Study of the Perceived Value of Membership in the Oley Foundation by Home Parenteral and Enteral Nutrition Consumers
Brandi Gerhardt, RN, BA
The University of Nebraska Medical Center • Omaha, NE
Successful Rehabilitation in Pediatric Ultrashort Small Bowel Syndrome (Conference Presentation)
Michelle Park, BA
Stanford University School of Medicine • Palo Alto, CA
A Cognitive Aid “Central Line Care Card” for Central Line Associated Bloodstream Infections in Pediatric Home Parenteral Nutrition Patients (Conference Presentation)
2013 HomePN Research Prize Winners
Mandy Corrigan, MPH, RD, LD, CNSC
Cleveland Clinic • Cleveland, OH
Identification and Early Treatment of Dehydration in Home Parenteral Nutrition and Home Intravenous Fluid Patients Prevents Hospital Admissions (Abstract)
Palle B. Jeppesen, MD, PhD
Rigshospitalet • Copenhagen, Denmark
Effects of Teduglutide, an Analog of Human GLP-2, on Intestinal Fluid Absorption in Short Bowel Syndrome (SBS) Patients (Abstract)
Marianne Opilla, RN, CNSC
Nutrishare, Inc. • Elk Grove, CA
2012 HomePN Research Prize Winners
Lisa Johnson, Rd, LD/N
Coram Specialty Infusion Services • Jacksonville, FL
Electrolyte Impossible: Clinically Navigating through the National Electrolyte Shortage
Pam Kruger, PhD
Wadsworth Center, New York State Department of Health • Albany, NY
Excessive Accumulation of Aluminum in the Bone of Patients on Long-Term Parenteral Nutrition (PN): Post-mortem Analysis (Conference Presentation)
ThriveRx • Grove City, OH
Using the Social Media to Evaluate and Share Insights on Life on Home Nutrition Support (Conference Presentation)
2011 HomePN Research Prize Winners
Melissa Leone, RN, BSN
Coram Specialty Infusion Services • Denver, CO
Marianne Opilla, RN, CNSC
Nutrishare, Inc. • Midlothian, VA
Charlene Compher, PhD, RD, FADA, LDN
University of Pennsylvania School of Nursing • Philadelphia, PA
2010 HomePN Research Prize Winners
Janet Baxter, PhD
Scottish Home Parenteral Nutrition Managed Clinical Network, Ninewells Hospital and Medical School • Dundee, UK
Hau D. Le, MD
Children’s Hospital • Boston, MA
Marianne Opilla, RN, BSN, CNSC
Nutrishare, Inc. • Midlothian, VA
2009 HomePN Research Prize Winners
Marianne T. Opilla, RN, BSN, CNSC
Nutrishare, Inc. • Midlothian, VA
Geert Wanten, MD, PhD, MSc
Radboud University Nijmegen Medical Centre • Nijmegen, The Netherlands
Marion F. Winkler, PhD, RD, LDN, CNSC
Rhode Island Hospital • Providence, RI
Relationships among Home Parenteral Nutrition, Food and Eating, and Quality of Life (Abstract, Conference Presentation)