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1、Enhancing Quality of Life in the Intestinal Failure PatientMarion Winkler,PhD,RD,LDN,CNSCProfessor of Surgery,Alpert Medical School of Brown UniversitySurgical Nutrition Specialist,Department of Surgery and Nutritional Support Service at Rhode Island HospitalMaria Karimbakas,RD,CNSCOptum Intestinal
2、Rehab Program ManagerFinancial DisclosuresMarion Winkler Takeda Pharmaceuticals,Nutrition Consultant VectivBio,Nutrition ConsultantMaria Karimbakas Optum Infusion Pharmacy,Employee VectivBio,Patient Leadership CouncilLearning Objectives1st Learning Objective:To understand the factors that impact the
3、 IF consumers quality of life2nd Learning Objective:To discuss modifications in parenteral support to enhance quality of life3rd Learning Objective:To review consumer-based actions to improve quality of lifeQoL Practical ApplicationsInfusions and QoLInfusion Hook-up Time-did you choose it?Time of Da
4、y of infusion-daytime vs.overnight?Infusion Hours-can it be any shorter?Number of days-has any weaning been discussed?Independence-ability to connect/disconnect infusions on your own?Mobility-are you using a pump and backpack with your infusions?Hydration-compounded vs.shelf-stable?Lab frequency-par
5、ameters for reducing?Medications and QoLDo you know the condition/symptom that each oral and IV medication has been prescribed for?Has the maximal dose been prescribed(i.e.anti-diarrheals)?Are there medications you are struggling to take(i.e.due to pill size,taste,side effect,cost)?Have you been ins
6、tructed on the most ideal time to take medication/supplements and those that need to be separated to avoid interactions?IV Medications-are pre-filled syringes an option and can any be added by pharmacy?Diet and QoLHave you been instructed on the most appropriate food and beverages for your underlyin
7、g condition?Could making diet changes positively impact your GI output,volume and frequency?Are you being overly restrictive with your diet which might be negatively impacting your QoL?Have you considered keeping intake and output records?Diet and QoL(continued)Did You Know?Using an insulated cup ca
8、n help you stay hydratedOral nutrition supplements are not requiredCertain fast foods can be eaten“on the go”Learning how to read food labels can be very helpfulAlways having non-perishable snacks helps you to more easily meet your calorie needsAre you prepared?Snacks&ORS stick packs Anti-diarrheals
9、-bring them!Store extra clothes and supplies in car Keep toilet paper,plastic bags,containers in car Do you know how to travel with your supplies?Helpful ResourcesHPN-PRO-QOley bathroom cardOley restaurant cardSave My Line posterSBS support groupsConnect with an Oley AmbassadorNext StepsFor the Cons
10、umer Take the HPN Pro-Q Make a list of topics to discuss with your team and rank them Begin addressing 1 topic at a timeFor the Clinician Ask your patient about their QoL and what changes would be most impactful Spend time understanding the“why”behind the decisions they makeThank you to VectivBio for sponsoring Oley for this session.