O-002 IBD CONNECT

Abstract

Inflammatory Bowel Disease (IBD) patients often require hospitalization. This inpatient experience can be a stressful and frightening time for the patient and family. Healthcare providers may not have sufficient time to address concerns or to explore personal perspectives to understand the psychosocial stress created by the hospitalization. Increasingly, patient volunteers are playing an important role in chronic disease care. The aim of this project is to determine the feasibility of incorporating a patient/family volunteer program (IBD CONNECT) into an inpatient IBD service. Program inception emanated from a Crohn’s disease patient’s family who identified a gap in support for hospitalized IBD patients and families. The goal of the volunteer program is to visit inpatients with ulcerative colitis and Crohn’s disease to provide: (1) patient and family support, (2) educational and resource materials, and (3) serve as a conduit to link to resources found both inside and outside of the hospital’s IBD Center. The volunteer program and individual volunteers are approved by the Office of Volunteer Services at the University of Pittsburgh Medical Center (UPMC). Patients are referred for IBD CONNECT consultation by the inpatient IBD staff, and a website has been created for educational purposes. The IBD CONNECT volunteer program was created in 2012, and the first inpatient was seen in September 2012. The volunteers have visited 405 new IBD inpatients with a mean number per month of 26 (19–29). Over one-third (39%; 158 of 405) of patients were seen more than one time during their admission, and 25.7% (104 pts) were seen on more than one admission to the hospital. To date, IBD Connect has made over 800 patient and family visits. The median length of visit with the patient/family is 28 minutes (5–90 minutes). The most frequently asked questions by patients/families of IBD CONNECT involve diet, pain, stress, and ability to return to a normal life. The answers to these questions have been included on the IBD CONNECT website and 90% of these patients have been referred to a dietitian or behavioral health specialist as a result. Patients have been anonymously surveyed before and after their interaction with IBD CONNECT. Compared to before IBD CONNECT, there was a significant increase in patients discussing their disease with family and friends after meeting with the volunteers (44% to 89% after). 92% of the patients have found the service helpful and rated their experience as excellent. (Figure) Integration of a patient/family volunteer service for IBD inpatients is feasible. The time dedicated by the IBD CONNECT volunteers is often much greater than is possible by the inpatient IBD healthcare provider. Patients and their families are willing to share important information and ask questions of the volunteers that may not be openly discussed with the physicians. We are in the process of measuring quality of life outcomes and have incorporated the IBD CONNECT volunteers as stakeholders in a submitted PCORI grant. In an era of patient-reported outcomes and patient-centered care, IBD patient and family volunteers should be included.