Effect of transition on QOL among Chinese children who underwent liver transplantation more than 5 years earlier^†

Liver transplantation (LT) has brought a new option to pediatric patients with end-stage liver diseases. These kids can live relatively healthy with the meticulous care from their parents, who provide them immunosuppressive medicines at the right time with the right dosage and remind them to visit the doctor regularly. However, these children will grow up one day, and they have to take care of themselves. Thus, the “transition” program is the key point when they progress from adolescence to adulthood.

“Transition” is a dynamic process that highlights the medical, mental, and educational requirements,¹ and this specific process helps pediatric patients to deal with several problems they meet in daily life until they successfully finish “transition.” The pediatric LT has developed hugely in China; however, the “transition” of this population has not elicited enough concern. This study was designed to verify the effect of “transition” on the quality of life (QOL) of pediatric patients who underwent LT >5 years ago.

Totally, 40 patients who had received LT and had been followed up at our center for >5 years were recruited. We delivered by e-mail the pediatric quality of life inventory (PedsQL) 3.0 transplant module² before and after “transition” intervention. All the questionnaires delivered were returned, with a rate of 100%. This study was approved by the Ethics Committee of Renji Hospital (No. RA-2021-658) and written informed consent was obtained from the parents/guardians of the patients. As explained in our previous study,³ the evaluation of QOL includes 8 sections: (i) about my medicines I; (ii) about my medicines II; (iii) my transplant and others; (iv) pain and hurt; (v) worry; (vi) treatment anxiety; (vii) how do I look; and (viii) communication. The Mann–Whitney U-test was used to explore the statistical difference between the QOL results of the pretransition and posttransition stages, and the statistical significance was set at P < 0.05.

In this study, the “transition” was implemented in the nursing outpatient clinic. The environment and settings were decorated according to child psychology. Teaching brochures and multimedia courseware were selected to address the cautions of LT follow-up, such as immunosuppressive medicines, daily diet, physical exercise, and so on. The parents were also invited to join this important process. The whole “transition” period continued for 1 year, and the children and their parents took part in the “transition” 13 times in total. The QOL was measured by the questionnaire before “transition,” as well as 6 months and 1 year after “transition”.

The median age of the 40 participants at the time of investigation was 10 years (range: 7–19 years), while the median post-LT period was 8 years (range: 6–13 years). Their median height and weight were 140 cm (range: 117–175 cm) and 29 kg (range: 20–62 kg), respectively. In the first posttransition measurement (6 months after “transition”), the sections on “about my medicines I,” “my transplant and others,” “treatment anxiety,” “how do I look,” “communication,” and total score were significantly different from those of the pretransition stage (P < 0.05). However, there was no significance of QOL during the second posttransition measurement (1 year after “transition”; P > 0.05).

The median total score of QOL in the second measurement was 72.3 (range: 36.4–91.8), and the full score was 100. The results showed that the QOL of this population was relatively general. The effect of “transition” on QOL among the pediatric LT patients was not permanent. However, in the short term, the “transition” certainly brought about improvement in the QOL.

Since transition often occurs within a sensitive period of late adolescence and early adulthood, this process needs multidisciplinary support.⁴ Therefore, even though the long-term effect of “transition” was not satisfactory in this study, we do not think the “transition” was inefficient. This study has not considered the importance of other disciplines, and this is the limitation of this study. More children should be included and a better design should be adopted in future studies. The “transition” was a systematic process that helped to optimize patients’ health and assisted young adults in changing their life style and becoming independent in the context of medical care.⁴ Thus, the QOL alone is not enough to evaluate the effect of “transition”; other indicators, such as adherence and self-management, should be taken into account.

It was reported that LT patients show improvement in terms of illness cognitions and QOL a short time after LT.⁵ The cognition after LT deserves attention during the follow-up process. Brain damage may occur during the waiting period before LT because of hepatic encephalopathy. Hence, cognition evaluation should be chosen as a routine follow-up item, especially for pediatric LT patients. From the viewpoint of the long-term effect of “transition,” cognition and learning abilities are also important. The physical fitness should be assessed together with the psychological condition. Thus, we can conclude an overall evaluation of the effect of “transition.”

In summary, we primarily focused on the effect of the transition process on the QOL of pediatric patients who underwent LT >5 years earlier. The short-term effect of transition was definite, while the long-term effect needs further evidence.