| Summary: | 博士 === 長庚大學 === 臨床醫學研究所 === 101 === Introduction
Quality of life is an essential indicator for evaluating the outcome of hematopoietic stem cell transplantation for children. The purposes of this cross-sectional study were to (1) compare the quality of life in children before and after transplantation, (2) compare the quality of life of post-transplant children to that of healthy peers, (3) assess the consistency of quality of life ratings between children and their parent proxies, (4) explore the factors associated with the quality of life of post-transplant children, and (5) assess the response shift on quality of life ratings in children receiving transplantation.
Methods
Children who met the following criteria were invited to participate in this study: (1) had received allogeneic hematopoietic stem cell transplantation for at least one year and were disease free, (2) aged between 2 to 18, (3) currently do not hospitalized, and (4) had no diagnosed psychiatric, cognitive, or behavioral problems before transplantation. Healthy peers matched with age and gender were recruited.
The final sample consisted of 51 children (aged 2-18) who had received allogeneic hematopoietic stem cell transplantation for 1 to 11.1 years and 60 matched healthy children. Severe anemia (51%) and leukemia (39%) were the dominant indications for transplantation in this study. Quality of life was assessed using the PedsQL 4.0 which consists of four domains: physical, emotional, social and school functioning. Patients and parents were asked to recall the pre-transplant quality of life.
Results
Post-transplant children reported good quality of life scores (0-100) in all domains with means for physical, emotional, social, and school functioning being 86.5, 88.0, 92.2, and 82.3, respectively. There was no significant difference between post-transplant and healthy children in all quality of life scores, except for physical functioning where post-transplant children had significantly lower scores than healthy control (86.5 vs. 94.2, P = 0.01). However, the mean physical functioning score of post-transplant children were still higher than the cutoff for impairment (cutoff = 73). Compared to pre-transplant, quality of life post-transplant was significantly improved by 11.3 points which exceed the minimal clinical important difference of the PedsQL 4.0 (4.4).
Significant ICCs between children’s and parent’s ratings on quality were found for all domains at both pre and post-transplant (ICC range from 0.32 to 0.73), except for social functioning at pre-transplant (ICC = 0.22). Two-factor (rater time) ANOVAs indicated that parent tended to underestimate their children’s emotional, social and school functioning regardless time before or after transplant but underestimate physical functioning only at pre-transplant.
Increased years delayed in school, cared by father, and shorter time after transplantation were found to be the factors associated with poorer post-transplant physical functioning (Adjusted R2 = 0.406). The greater severity of chronic GVHD was found to be the single factor associated with poorer post-transplant emotional and social functioning (Adjusted R2 being 0.202 and 0.155, respectively). Caregiver depression was associated with poorer school functioning (Adjusted R2 = 0.144).
In examining the response shift, this study found that significantly higher percentage in patient group (65%) than in healthy peer group (33%) would shift their value to place the physical functioning as the most important dimension of life (X2 = 3.80, P = 0.05). Patients who had the above value shift demonstrated a better improvement in emotional functioning than patients without this shift. Patients aged 13-18 were more likely to have response shift than patients in other age groups (P < 0.01).
Clinical Implications
This study sampled patients from a hospital which treated approximately one-third of the Taiwanese population of pediatric hematopoietic stem cell transplantation. Therefore, the findings of quality of life improvement after hematopoietic stem cell transplantation are representative. When using parent’s ratings on children’s quality of life, one should be caution with the problem of underestimation. Some risk factors for poor quality of life have been identified and specially attention should be given to the high risk groups. Finally, this is the first attempt to measure the response shift in patients with pediatric hematopoietic stem cell transplantation. Preliminary findings of the response shift can serve as the foundation for further research.
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