With improved survival following pediatric ITx, evaluating psychosocial outcomes in the long term is essential. Aim: Describe psychosocial outcomes of long term survivors at > 5 yrs post-ITx. Method: Parent & child forms of the Child Health Questionnaire (CHQ) were used to assess perceptions of 14 dimensions of physical and psychosocial function. Descriptive statistics, between group comparisons and correlations were completed. Results: 22 parent/child dyads at > 5 yrs post-ITx participated. Mean age 12.8 yrs (range: 8.4-30 yrs); mean time post-ITx 10 yrs (range: 5-21.7 yrs); 50% male. Indications: congenital (37%), volvulus (36%), motility disorders (12%). In comparison to the norm, parents report less positive perceptions of the childs general health (p< .001), greater limitations/disruptions in family activities (p<.04) and a significant emotional impact on the parent (p<.002). Children reveal more favorable outcomes except for behavior (p<.0007) and less positive perceptions of general health (p< .003), but reported less pain than the norm (p<.03). There were no differences in the childs perceptions of physical functioning, mental health, self-esteem, family cohesion. In comparing child/parent mean scores, children had a more positive perception of their general health (p<.02) and changes in health over time (p< .02). A strong correlation between parent/child scores was seen in perceptions of behavior (r=.55; p<.01), mental health (r=.55; p< .01), and family activities (r=.54; p< .01). In regard to clinical outcomes, children with > 2 episodes of ACR had significantly lower scores in behavior domains (p< .03, p< .044). Those who developed PTLD had greater physical dysfunction (p<.003) and a more negative perception of changes in health (p<.04). CMV did not affect physical functioning for the child, but parents reported greater concerns about changes in health (p<.04). Conclusions: Pediatric ITx recipients generally describe their psychosocial functioning as similar to the norm at > 5 yrs post-ITx; however perceptions of behavior and general health are less favorable. Parents have less favorable assessments than children which may be affected by recall of the pre-and post-tx period, complications, and concerns for the future. ACR and PTLD may significantly impact the childs psychosocial outcomes.
To cite this abstract in AMA style:Kosmach-Park B, Sindhi R, Hoffman L, Tuite T, Mazariegos G. Parent and Child Perceptions of Long Term Psychosocial Functioning at > 5 Years Post-Intestine Transplant (ITx) [abstract]. Am J Transplant. 2013; 13 (suppl 5). https://atcmeetingabstracts.com/abstract/parent-and-child-perceptions-of-long-term-psychosocial-functioning-at-5-years-post-intestine-transplant-itx/. Accessed October 28, 2020.
« Back to 2013 American Transplant Congress