Quality of Life

As survival rates increase for intestine transplant recipients, with many patients having an extended survival of greater than 5 years, quality-of-life issues are beginning to be examined. Through clinical experience, it is evident that life after intestine transplantation can be challenging. For approximately 6-12 months posttransplantation, care routines of pediatric patients may include 7-15 daily medications, tube feedings, IV fluids, and maintenance of the gastrostomy tube, jejunostomy tube, ostomy, and Broviac catheter, as well as the usual childcare needs.[101] These routines generally decrease over time as a result of ostomy closure, increased oral intake, and removal of appliances. However, a mean of 7 daily or twice daily medications is still required at greater than 3 years posttransplantation, and 17% of patients continue to require enteral feeding due to oral aversion.[101] More than 80% of patients who are school aged are attending school full time at 3 years posttransplantation[101] or have returned to school at the appropriate level.[102]

In a study of parents whose children had received liver and/or intestine transplants, a majority of parents reported elevated psychological symptoms, with fathers showing greater distress than mothers. Although parenting stress was not elevated when compared with a normative sample, having a younger child going through transplantation was associated with higher stress. Parents reported better physical function but lower vitality than the normative population.[103]

Psychiatric and psychosocial problems affecting quality of life following intestine transplantation are a function of severity of disease, duration of preoperative TPN, length of the waiting period, and prolonged postoperative course, and vary inversely with available social support.[49] In the early postoperative period, a high incidence of affective disorders, such as depression and anxiety related to postoperative adjustment, is reported.[104]

Quality of life was assessed in 9 adult survivors of intestine transplantation who reported significant improvements in physical, social, and emotional function when compared to their pretransplant status. However, these patients also reported a greater need for medications, decreased mobility, increased pain and discomfort, fewer social supports, and difficulty parenting.[105] Quality of life improved over time in adult intestine transplant recipients who were evaluated at a mean time of 2.7 and 5.3 years after transplantation. These patients reported improvements in anxiety, sleep, and impulsiveness/control, which may reflect their successful adjustment and adaptation to chronic care needs.[73]

Assessing quality of life in intestine transplant recipients is challenging due to significant patient variability with respect to underlying disease, the postoperative course, long-term complications, and psychosocial factors. It is imperative, however, that quality of life be evaluated as more patients are offered this therapy to help them make the best decisions for their care and to guide the transplant team in implementing medical management and therapy.


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