To our knowledge, this is the first multicenter trial evaluating the impact of complementary therapies on distress in children undergoing SCT. Successful completion of the trial demonstrates the feasibility of introducing complementary therapies in the transplant setting; however, our results indicated no significant intervention effects on the adjustment and quality of life of children following SCT. This is consistent with the previously reported findings from this same trial regarding acute distress during the in-patient transplantation period.29
The lack of significant results can be better appreciated in the context of 2 findings that may be more noteworthy than the null intervention effects. First is the significant improvement over time on all outcomes across all patient groups, including those receiving only SC. Despite the aversive nature of SCT, patients reported feeling and functioning significantly better within 6 months of the procedure, and this was confirmed by parental report. Second is the good psychological adjustment levels observed at admission for SCT, which then continued to improve after transplantation. Such excellent adjustment has been reported previously in general pediatric oncology populations,3–6
but children undergoing SCT were thought to be a subgroup at higher risk of adjustment difficulties.10
The surprisingly positive adjustment of this multisite sample and the possible influence of low distress on the null intervention findings are illustrated in the outcome of depressive symptoms on the CDI. Even at the time of admission, the overall mean of the sample was below the normative mean of healthy children.30
This was followed by a significant decline in symptom scores at 6 months. The mean of the SC group, 4.8 at 6 months, is nearly an SD below normative expectations. It would have been difficult for any intervention to improve on this outcome.
In contrast, symptoms of posttraumatic stress at admission were elevated relative to published reports of healthy youth on the PTSDI instrument35
, however, at 6 months after transplantation, PTSS scores were comparable with those of healthy youth. This finding suggests that most patients do not experience the procedure as a traumatic event, something that has been suggested in the pediatric transplant setting,37
and widely addressed as an outcome in adult SCT populations.38,39
Given that the normative response to SCT is recovery after a brief disruption, it appears that a resilience model, rather than a posttraumatic stress model, is a better fit for conceptualizing child response to SCT.
Patients and parents also reported reasonably good levels of the patient’s HRQL, as measured by subscales on the CHQ. Across groups, both sources reported scores within normal limits and comparable with healthy children on measures of pain, mental health, self-esteem, and behavior at admission, which then showed significant improvement at week+24. Measures of physical functioning and general health at admission were understandably lower than those obtained from healthy children. These showed significant improvement at week+24, but remained below normative levels. The improvement in physical and emotional functioning by 6 months is consistent with previously reported quality-of-life outcomes in pediatric SCT.40
The observed pattern of good adjustment and low distress during SCT is counterintuitive and contradictory to prior research, warranting further investigation about the factors that may contribute to these findings. Perhaps the most proximal explanation points to improvements in SC and the comprehensive supportive care practices in most pediatric SCT settings. In addition to close medical surveillance and aggressive pharmacologic symptom management, all sites maintain multidisciplinary psychosocial support teams (eg, child life, social work) who are available to patients throughout the process. This is not to suggest that the physical and psychological challenges of SCT have been eliminated, but that it may not be the ordeal that it once was, and does not appear to be traumatic for most patients, given current levels of supportive care.
Benefit finding and growth are also processes by which people may experience positive outcomes after a seemingly adverse event.26
This concept has been applied to the experience of serious illness and posited to play a role in adaptive functioning within both adult and pediatric cancer populations.26,28,41,42
Research has generally found a weak relationship between benefit finding and concurrent psychological distress, but it is predictive of adjustment over time.26,41
The current findings suggest that the pediatric SCT population may be particularly inclined to engage in a process of finding good in their experience and, as a result, cope better with the stressors of their treatment. Regardless of the explanation, pediatric SCT provides another example of human thriving in adversity, where resilience is the rule, and maladjustment is a relatively rare exception. It is possible that the positive outcomes observed are not unique to the SCT setting, but may be applicable to other life challenges, both medical and nonmedical,23–25
and perhaps are more readily observed in child than adult populations.
There are several potential study limitations. The high rate of attrition because of mortality, morbidity, and withdrawal (40%) reduced the evaluable sample size, resulting in adequate power to detect only moderate to large between-group differences. The lack of differences at baseline between those who completed the study and those who did not, assuages somewhat the concern about attrition and missing data. The wide age range of participants is another potential limitation, necessitating outcome assessment broadly across developmental levels. It is also possible that the intervention produced other benefits for patients and their families that we failed to measure. In this regard, collecting parallel qualitative data may have been useful. Although the multisite nature of the study adds to the generalizability of the findings, the participating sites may be somewhat atypical in the level of supportive care they provide, and may not be representative of all pediatric transplant centers. Despite these concerns, the results of this multisite trial suggest that children undergoing SCT are adjusting surprisingly well, and that with current levels of supportive care, SCT need not involve significant trauma, lingering distress, or disruptions in normal adjustment trajectories. These surprising findings require replication in future studies, but at present, appear to point to a remarkable resilience among the children who undergo this procedure.