Impact of Resilience Training on Quality of Life in New Ostomy Patients and Their Partners

Approximately 100,000 people in the United States undergo operations that result in acolostomy or ileostomy every year. The implications of having a new ostomy can includephysical side effects (short and long‐term), impact on activities of daily living (ADL's)and relationships as well as major psychosocial impact that a stoma can have on both thepatient and their partners. Need for a stoma has been associated with drastic effect onpatient's quality of life in multiple studies, however, effects on partner's life havenever been fully. The amount of help spouses provide with daily stoma care activityvaries providing all ostomy care to never or rarely helping their partners with stomacare and can have significant effect on adaptability to new stoma.1 The changesexperienced by the ostomy patient are shared by the couple, and both parties must worktoward adapting to the condition.Studying effects of stoma can be challenging, due to required length of studies tocapture the quality measures over time and after significant time has passed since theostomy creation. Depending on the indication for the ostomy, some patients may have itreversed within months while it is permanent for other patients. In addition to thevariety of patients with ostomies, quality of life studies are challenged by the lengthof time to complete surveys, focus groups, and interviews. A few available studiesincluding The City of Hope Quality of Life: Ostomy Instrument tool has been validated andused to further understand how an ostomy is affecting a patient in order to provideimproved care. Another tool, the Ostomy Comprehensive Health and Life Assessment Survey,was utilized to study impacts on patients recovery after ostomy surgery and found that astable spouse or partner was predictive of positive life satisfaction scores.2.Additional studies demonstrated further need for education and follow up by findingseveral negative impacts of a stoma on patients' 3 Current guidelines recommend preoperative education and stoma marking as well as small group support as measures shown toimprove coping with post operative stoma. 4 Patients with high levels of resilience areable to use the problems they face in a positive manner subsequently experience fewerdepressive episodes and adapt better to their disease. Resilience refers to "a dynamicprocess encompassing positive adaptation within the context of significant adversity".5Resilience training "is a prepared (structured and planned) activity aimed to embrace andgain a positive mindset and experience in stressful and difficult emulated situations ."6 Resilience training has been shown to foster enhanced coping to changes in health,decrease risk for depression and anxiety, and increase engagement in positiveself‐management behaviors, in the context of how patients cope with IBD more broadly.There is limited research examining the role of resilience in ostomy adaptation. Onecross sectional study found that patients with Crohn's disease and an ostomy with higherresilience had lower depressive symptoms. To our knowledge, no studies are available toevaluate effect of pre operative resilience training and resilience on ostomate or theirpartners. Training techniques may vary but include common techniques to develop skillsfor emotional regulation, choosing to be realistically optimistic about the future,setting achievable goals, realizing that which is under and now under our own control andlearning to thrive in difficult situations.7 Resiliency training methods may includestructured courses, videos, journaling, meditation and one and one counseling.Hypothesis Standardized education and resilience training will help ostomy patients andtheir partners to better cope with their new stoma and improve quality of life.Aims Aims 1: Compare effects of standardized patient and partner pre operative andresiliency training on patient and partner quality of life.Aim 2: Evaluate effects of standardize training on rates of readmission, emergency roomand clinic visits and complicationsMethod Northwestern Medicine Digestive Health Center has a very busy gastrointestinalsurgery practice and performs approximately 175 ostomy surgeries each year. These aredone for a variety of conditions including colon or rectal cancer, inflammatory boweldisease and diverticulitis. Patients undergoing planned ileostomies and colostomies,whenever temporary and permanent ostomy patients will be recruited.. Patients beingplanned for ostomy will be identified from clinic and inpatient schedules. If agreed toparticipate, baseline surveys will be administered and patients will be randomizedbetween standard enhanced pre operative training. Standard training will include currentpre operative visit with wound and stoma nurses (partner participation is allowed, butnot required) In enhanced group, partner participation will be strongly encouraged at allsteps and they will undergo resiliency training as well. Basic resiliency training willbe included with standardized ostomy education and will include written materials,videos, and activities that the patient will be given to complete on their own.