Kids Have Good Physical, Social Outcomes Long After Intestine Transplant

July 25, 2013

By Lorraine L. Janeczko

NEW YORK (Reuters Health) Jul 25 - Children who survive at least five years after an intestine transplant (ITx) are generally in good physical health, and they seem to fit in with their social group, new research suggests.

They are generally on low doses of immunosuppression, are steroid-free and have nutritional autonomy, although most of them grow more slowly than normal, researchers found.

Because survival after pediatric ITx has increased dramatically over the past 15 years, and graft function has improved with better medical management, researchers can now pay more attention to these children's quality of life, Dr. Beverly Kosmach-Park of Children's Hospital of Pittsburgh and her colleagues said in a presentation at the Intestinal Transplantation Association's 13th International Small Bowel Transplant Symposium in Oxford, UK last month.

"This is the oldest and largest cohort that has been studied, and it adds to the current body of knowledge of the associations between clinical and psychosocial variables," Dr. Kosmach-Park told Reuters Health by email.

"This group of long-term intestine transplant recipients and caregivers describe themselves as having good physical and psychosocial functioning when compared to a normative population," she said.

The youngsters, she added, "endorse family cohesiveness and feel that their role as a child interacting with peers is not affected by any behavioral problems."

However, the children also report that their general behavior is not as good as their peers and they have concerns about their general health, Dr. Kosmach-Park continued.

"Caregivers generally report that their child's physical and psychosocial functioning following intestine transplant in the long term is similar to children who have not had a transplant," she said. "Parents report that their children have normal behavior and no significant mental health issues post-transplant."

Also, she said, "The family's ability to function effectively as a unit does not seem to be affected by the transplant in the long term."

Out of 231 children who received a new intestine at Children's Hospital of Pittsburgh since 1990, 131 were alive when the researchers undertook their study, 74 were more than five years post-ITx, and 68 were eligible for enrollment.

Of the 41 who agreed to participate, 58% were male. The mean age was 15 (range, eight to 30), and the mean interval since the primary ITx was 10.4 yrs (range, five to 22). Indications for ITx included congenital problems, volvulus, and motility disorders.

The researchers reviewed patient charts and the hospital database, as well as results of the parent and child forms of the Child Health Questionnaire (CHQ) and the SF-36v2 Health Survey.

Thirty-seven patients were on a regular oral diet. Thirty-six had diminished growth velocity in height for age (Z = -1.0783), and 32 had diminished growth velocity in weight for age (Z = -.7663).

According to the abstract for the presentation, 33 patients achieved stoma closure, 12 required anti-motility agents, and four had undergone renal transplant.

Children generally reported their psychosocial functioning as being close to normal; however, perceptions of their behavior and global health were less favorable. Caregivers negatively rated children's general health, disruption of family activities and the emotional impact of the child's health.

Children reported that they had less pain (p<0.03), but they also reported poorer overall health (p<0.003) and more behavior problems (p<0.0007). Their caregivers also perceived the children's general health to be worse than normal and they reported that children with an intestine transplant significantly disrupted family activities.

Parents reported significantly lower mean scores in family activities (p<0.04), the emotional impact on the patients (p<0.002), and the patients' general health perceptions (p<0.001).

Posttransplant lymphoproliferative disease was related to significantly lower scores in physical functioning (p<0.003), changes in health (p<0.04) in reports by children, and limitations related to behavior (p<0.03) in reports by parents. Parents of children who developed cytomegalovirus infection reported significantly lower scores in changes in health (p<0.04), but children reported no changes.

"Intestine transplantation has evolved into an accepted treatment for intestinal failure," said Dr. Kosmach-Park in an email. "The short-term survival has improved significantly since the early 1990s; however, achieving long-term survival has been challenging."

Six of the children in this study had undergone retransplant; these patients had survived a mean of 8.4 years after retransplant.

"This study suggests that this group of long-term survivors is generally healthy, is maintained on low levels of tacrolimus and is steroid free," Dr. Kosmach-Park said.

Dr. Kareem Abu-Elmagd, director of the Transplantation Center of the Cleveland Clinic in Cleveland, OH, is encouraged by these findings. "This study highlights the successful long-term rehabilitative indices of intestinal and multi-visceral transplantations in children and young adults. Children and adults achieve full nutrition autonomy, normal growth development, and excellent nutritional status," he said in an email.

"Some of these patients continue to suffer from permanent physical and psychosocial impairment induced by the primary disease and the need for intravenous nutrition before transplantation, but many of them have become adults and a handful of adult patients have healthy reproductive lives," he added.

Dr. Abu-Elmagd, who was not involved in the study, emphasized that "the findings support early referral for gut rehabilitation and before the development of irreversible organ damage including the liver and neurological system."

"I would encourage clinicians to refer patients with short-bowel syndrome and complex abdominal pathology to highly specialized centers of gut rehabilitation where they will be rehabilitated with the new enterocyte growth factors (Gattex), autologous surgical reconstruction and/or transplantation if indicated," he added.


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