Pediatr Transplantation 2015: 19: 547–554
© 2015 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd
Pediatric Transplantation DOI: 10.1111/petr.12532
Health-related quality of life and sleep among Chinese children after living donor liver transplantation He K, Shen C, Chen X, Han L, Xi Z, Zhou T, Zhang J, Xia Q. (2015) Health-related quality of life and sleep among Chinese children after living donor liver transplantation. Pediatr Transplant, 19: 547–554. DOI: 10.1111/petr.12532. Abstract: LDLT is a well-established treatment for most terminal liver diseases in children. Survival rates have improved, yet few studies have considered HRQoL or sleep problems in LDLT recipients. In this cross-sectional study, we enrolled 51 children who had undergone LDLT in Renji Hospital. PedsQLTM 4.0 Generic Core Scales, PedsQLTM 3.0 Transplant Module, and Pediatric Sleep Questionnaire were used to assess outcomes. Of all participants, 11.8% (6/51) reported low total HRQoL scores. Participants’ scores on most HRQoL subscales were comparable to the scores of healthy children. However, compared with solid organ transplant recipients, LDLT recipients scored significantly lower in About My Medicines II (t = 3.092, p = 0.002) and Worry (t = 2.760, p = 0.006). Sleep problems (41.2%) were common among participants. Hierarchical regression analyses showed that SRBD accounted for significant variance in HRQoL on total generic HRQoL (R2 = 0.446, p < 0.001), psychosocial health (R2 = 0.372, p = 0.001), physical health (R2 = 0.345, p = 0.003), total transplant-specific HRQoL (R2 = 0.514, p < 0.001), About My Medicines I (R2 = 0.365, p = 0.013), My Transplant and Others (R2 = 0.334, p = 0.005), Pain and Hurt (R2 = 0.544, p < 0.001), Worry (R2 = 0.401, p = 0.001), Treatment Anxiety (R2 = 0.526, p < 0.001), How I Look (R2 = 0.221, p = 0.040), and Communication (R2 = 0.343, p = 0.012). In conclusion, sleep problems are non-negligible in children after LDLT and predicted significant variance on HRQoL.
Because of the scarcity of donor organs, LDLT has become the most common alternative for children with end-stage liver disease and some metabolic diseases. LDLT comprised 64.8% of all pediatric LT recipients in the last decade, according to a report on pediatric LT from the China Liver Transplantation Registry (http://www.cltr.org/). With advances in surgical techniques, immunosuppressive medications, and post-transplant monitor-
Abbreviations: BMI, body mass index; HRQoL, healthrelated quality of life; LDLT, living donor liver transplantation; LT, liver transplantation; PedsQLTM, Pediatric Quality of Life InventoryTM; PLMS, periodic limb movements during sleep; RLS, restless leg symptoms; SRBD, sleep-related breathing disorder.
Kang He, Conghuan Shen, Xiaosong Chen, Longzhi Han, Zhifeng Xi, Tao Zhou, Jianjun Zhang and Qiang Xia Department of Liver Surgery, Renji Hospital, School of Medicine, Shanghai Jiao Tong University, Shanghai, China
Key words: health-related quality of life – sleep problems – pediatric living donor liver transplantation Qiang Xia, Department of Liver Surgery, Ren Ji Hospital, School of Medicine, Shanghai Jiao Tong University, 1630 Dongfang Road, Shanghai 200127, China Tel.: 8621 68383775 Fax: 8621 58737232 E-mail: [email protected] Accepted for publication 5 May 2015
ing (1), the focus of research has shifted toward recipients’ quality of life (2–7). Increasing evidence indicates that poor sleep quality leads to HRQoL decrements in all children, with or without medical condition (8–10). For children undergoing major surgery, poor sleep quality is common and often associated with post-surgical pain and low HRQoL (11). Previous studies have demonstrated that ameliorating sleep disorders can improve short-term and long-term HRQoL in children (12–14). Moreover, parents of children with severe illnesses often experience deficient sleep and show significant instability in their sleep, related to HRQoL (15). Recently, Fredericks et al. (16) reported that sleep problems are common in pediatric LT recipients and predictive of 547
He et al.
significant variance in HRQoL. However, little information has been reported on sleep problems and HRQoL specifically in pediatric LDLT recipients. This cross-sectional study used both the PedsQLTM 3.0 Transplant Module and PedsQLTM 4.0 Generic Core Scales (17) to investigate Chinese pediatric recipients’ HRQoL. Additionally, the Pediatric Sleep Questionnaire was used to evaluate participants’ quality of sleep after LDLT and its effect on HRQoL. Methods Study population and procedures A convenience sample of pediatric LDLT recipients from Ren Ji Hospital and their parents were enrolled in the study. Ren Ji Hospital (Department of Liver Surgery Shanghai Jiao Tong University Ren Ji School of Medicine) performs more than half of the pediatric liver transplants in China. All recipients more than two yr old who had received LDLT for the first time more than six months earlier were eligible for our study. Re-transplants were excluded. Recipients and their donating parents were seen during a follow-up medical visit after hospital discharge. We conducted a cross-sectional survey of quality of life and sleep problems among pediatric LDLT recipients, which was approved by the institutional review board of Shanghai Jiaotong University School of Medicine. Because all participants were younger than 10 yr old, questionnaires were completed by parents or guardians. This was done during routinely scheduled clinic visits. The vast majority of questionnaires (96% [49/51]) were completed by donating parents. All demographic and medical data were obtained from medical records from the Department of Liver Surgery, Ren Ji Hospital.
Questionnaires PedsQLTM 4.0 Generic Core Scales and PedsQLTM 3.0 Transplant Module were used to measure HRQoL in children. The former one is a generic and standardized questionnaire assessing dimensions of physical, emotional, social, and school functioning using a scale of 0–100, with high scores indicating a high HRQoL. The published cutoff value for PedsQLTM Generic Core Scales is 65.4, with scores lower than 65.4 indicating low total HRQoL (16). The latter tool is a 46-item, transplantspecific questionnaire that includes the following eight sections (17): (i) About My Medicines I (nine items; barriers to medical regimen adherence), (ii) About My Medicines II (eight items; medication side effects), (iii) My Transplant and Others (eight items; social relationships and transplant), (iv) Pain and Hurt (three items; physical discomfort), (v) Worry (seven items; worries related to health status), (vi) Treatment Anxiety (four items; fears regarding medical procedures), (vii) How I Look (three items; impact of transplant on appearance), and (viii) Communication (four items; communication with medical personnel and others regarding transplant issues). With identical format and scoring method to PedsQLTM 4.0 Generic Core Scales, higher scores in PedsQLTM 3.0 Transplant Module reflect better health. The Pediatric Sleep Questionnaire is a validated and parent-completed scale that evaluates sleep problems in children with or without medical comorbidities (18). It encompasses a 22-item SRBD index and a six-item subscale assessing PLMS, RLS, and growing pains. The SRBD index
548
consists of snoring, excessive daytime sleepiness, and behavior subscales. A cutoff score of ≥0.33 is regarded as a positive screen, reflecting that a child is positive for 33% of the symptoms (16, 19). It was translated into Chinese by an investigator followed by backward translations from the Chinese reconciliation version to English by another investigator on our study team as described (20). The Chinese version of PedsQLTM 4.0 Generic Core Scales has been validated linguistically (21). PedsQLTM 3.0 Transplant Module was validated linguistically (English to Chinese), as described in the PedsQL Web site (http:// www.pedsql.org/translations.html). In brief, different forward translations were conducted from English to Chinese followed by backward translations from the Chinese reconciliation version to English. Questionnaires obtained after the backward translations were then tested on a panel of at least five respondents via interviewing.
Statistical analysis Demographic variables were described as median, range, or percentages. Medical data were presented as means and standard deviations. Independent samples t-tests were used to test statistical differences between LDLT recipients and healthy children or solid organ transplant recipients’ scores in HRQoL. Hierarchical multiple regression analyses were used to evaluate the contribution of sleep problems to recipients’ HRQoL in both generic and transplant-specific scales. All statistical analyses were performed using SPSS version 18.0 (SPSS Inc., Chicago, IL, USA) for Windows. Statistical significance was set at p < 0.05.
Results Characteristics of participants
There were in total 51 LDLT recipients included in this study. Demographic and medical-related data are displayed in Table 1. The median age of the recipients was 3.62 yr (range = 2.00–9.27 yr), and the median time since transplantation was 2.23 yr (range = 1.02–7.03 yr). The median height and weight of participants were 100.0 cm (range = 75.0– 148.0 cm) and 16.0 kg (range = 7.5–40.0 kg), and the median calculated BMI was 16.4 kg/m2 (range = 12.5–31.2 kg/m2). About half of the patients were male (53%), and the main diagnosis of the recipients was biliary atresia (96%), with the primary immunosuppressant medicine being tacrolimus (92%). Only 6% (3/51) of recipients had abnormal liver function tests in the past six months, of whom two were re-admitted for treatment. Moreover, 12% (6/51) and 4% (2/51) of enrolled patients were diagnosed with biliary and vascular complication, respectively, since transplantation. In addition, three of the 51 children had experienced acute cellular rejection since LDLT. LDLT recipients’ quality of life assessment using PedsQLTM scales
With published cutoff of 65.4 for PedsQLTM Generic Core Scales (16), 11.8% (6/51) of participants
Quality of life and sleep problems after LDLT Table 1. Characteristics of LDLT recipients (n = 51) Ages at survey (yr), median (range) Time since transplantation (yr), median (range) Sex, n (%) Female Male Height at time of survey (cm), median (range) Weight at time of survey (kg), median (range) BMI at time of survey (kg/m2), median (range) Primary disease, n (%) Biliary atresia Glycogen storage disease CMV-induced liver failure Immunosuppressant medications, n (%) Tacrolimus Cyclosporine Abnormal liver function in the past 6 months, n (%) No Yes Biliary complication since transplantation, n (%) No Yes Vascular complication since transplantation, n (%) No Yes Rejection episodes since transplantation, n (%) No Yes
3.62 (2.00–9.27) 2.23 (1.02–7.03) 24 (47) 27 (53) 100.0 (75.0–148.0) 16.0 (7.5–40.0) 16.4 (12.5–31.2) 49 (96) 1 (2) 1 (2) 47 (92) 4 (8) 48 (94) 3 (6) 45 (88) 6 (12)
Table 2. PedsQLTM 4.0 Generic Core Scales and PedsQLTM 3.0 Transplant Module of LDLT recipients (parent proxy report) LDLT recipients Scale
Number of items
PedsQLTM 4.0 Generic Core Scales Total score 23 Physical health 8 Psychosocial health 15 Emotional functioning 5 Social functioning 5 School functioning 5 PedsQLTM 3.0 Transplant Module Total score 46 About My Medicines I 9 About My Medicines II 8 My Transplant and Others 8 Pain and Hurt 3 Worry 7 Treatment Anxiety 4 How I Look 3 Communication 4
n
Mean
s.d.
51 51 51 51 51 51
82.21 77.45 83.79 80.78 83.24 87.35
13.71 22.60 13.08 19.35 17.26 18.48
51 51 51 51 51 51 51 51 51
75.90 82.80 75.40 75.03 80.23 68.28 66.42 75.16 83.82
15.44 16.62 19.76 19.53 18.56 25.22 28.20 26.06 17.77
49 (96) 2 (4) 48 (94) 3 (6)
reported low total HRQoL. The mean total score of these recipients was 82.21 13.71. As shown in Table 2, physical health and psychosocial health scores were 77.45 22.60 and 83.79 13.08. As to subscales of psychosocial health, emotional, social and school functioning displayed 80.78 19.35, 83.24 17.26 and 87.35 18.48, respectively. Age, sex, time since LDLT, height, or weight was not significantly related to HRQoL. For the PedsQLTM Transplant Module, recipients’ total score was 75.90 15.44. Table 2 presents scores of all transplant-specific subscales. Prevalence of sleep-related symptoms in LDLT recipients
Based on results from the questionnaire reports, LDLT recipients enrolled in this study presented with symptoms of habitual snoring, excessive daytime sleepiness, daytime behavior difficulties, and RLS. Participants displayed SRBD score at 0.31 0.21, indicating that 31% of the subscale items were positive. As mentioned under Methods, 21 participants (41.2%) exceeded the clinical cutoff score of 0.33. Of SRBD index components, the mean snoring subscale score was 0.30 0.26, and 17 participants (33.3%) complained of habitual snoring. The mean excessive daytime sleepiness of all recipients was 0.11 0.16, and three participants (5.9%)
exceeded the clinical cutoff score. The mean behavior index score for the sample of LDLT recipients was 0.53 0.33, with 38 recipients (74.5%) receiving a score suggestive of inattention and hyperactivity. The mean PLMS/RLS index score for LDLT recipients was 0.19 0.21. Significant symptoms of PLMS/ RLS were reported for 12/51 LDLT recipients (23.5%). There were no significant differences across the SRBD, habitual snoring, excessive daytime sleepiness, behavior difficulties, or PLMS/RLS with respect to age, sex, time since LDLT, height, or weight. Effect of sleep problems on HRQoL
Age, sex, time since LDLT, height, and weight did not significantly affect scores in HRQoL, PedsQLTM 4.0 Generic Core Scales, and PedsQLTM 3.0 Transplant Module. Hierarchical regression analyses were performed to evaluate the role of sleep problems in HRQoL of LDLT recipients. Age, time since LDLT, height, and weight were entered as block 1, and the SRBD scales were entered as block 2. First, with respect to relationship between PedsQLTM 4.0 Generic Core Scales and SRBD (Table 3), we found that regression models for the psychosocial health, physical health, and total HRQoL summary scales were not significant. Age at LDLT, time since LDLT, height, and weight did not account for significant variance on all HRQoL scales (p > 0.05). Additionally, SRBD accounted for significant variance on PedsQL summary scales measuring recipients’ 549
He et al. Table 3. Regression analyses of LDLT recipients’ scores in PedsQLTM 4.0 Generic Core Scales and SRBD
Model
Scale
Step
Variable
1
Total HRQoL
1
Age at LDLT Time since LDLT Height Weight Snoring Excessive daytime sleepiness Behavior PLMS/RLS Age at LDLT Time since LDLT Height Weight Snoring Excessive daytime sleepiness Behavior PLMS/RLS Age at LDLT Time since LDLT Height Weight Snoring Excessive daytime sleepiness Behavior PLMS/RLS Age at LDLT Time since LDLT Height Weight Snoring Excessive daytime sleepiness Behavior PLMS/RLS Age at LDLT Time since LDLT Height Weight Snoring Excessive daytime sleepiness Behavior PLMS/RLS Age at LDLT Time since LDLT Height Weight Snoring Excessive daytime sleepiness Behavior PLMS/RLS
2
2
Psychosocial health
1
2
3
Physical functioning
1
2
4
Emotional functioning
1
2
5
Social functioning
1
2
6
School functioning
1
2
t for within-step predictors
b 0.299 0.076 0.187 0.168 0.301 0.282 0.304 0.043 0.333 0.125 0.178 0.171 0.254 0.218 0.279 0.038 0.146 0.032 0.146 0.111 0.29 0.305 0.253 0.17 0.23 0.101 0.147 0.112 0.183 0.213 0.271 0.097 0.377 0.044 0.316 0.295 0.338 0.277 0.012 0.158 0.114 0.332 0.072 0.031 0.033 0.018 0.32 0.169
0.981 0.318 0.603 0.519 2.146* 2.046* 2.112* 0.283 1.089 0.521 0.569 0.526 1.7 1.488 1.821 0.238 0.482 0.135 0.472 0.344 1.899 2.036* 1.618 1.034 0.772 0.43 0.482 0.354 1.245 1.477 1.798 0.618 1.32 0.194 1.084 0.972 2.519* 2.106* 0.084 1.097 0.399 1.477 0.247 0.101 0.199 0.113 1.891 0.953
R2
R2 change for step
F change
0.04
0.04
0.476
0.753
0.446
0.406
7.684
© 2015 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd
Pediatric Transplantation DOI: 10.1111/petr.12532
Health-related quality of life and sleep among Chinese children after living donor liver transplantation He K, Shen C, Chen X, Han L, Xi Z, Zhou T, Zhang J, Xia Q. (2015) Health-related quality of life and sleep among Chinese children after living donor liver transplantation. Pediatr Transplant, 19: 547–554. DOI: 10.1111/petr.12532. Abstract: LDLT is a well-established treatment for most terminal liver diseases in children. Survival rates have improved, yet few studies have considered HRQoL or sleep problems in LDLT recipients. In this cross-sectional study, we enrolled 51 children who had undergone LDLT in Renji Hospital. PedsQLTM 4.0 Generic Core Scales, PedsQLTM 3.0 Transplant Module, and Pediatric Sleep Questionnaire were used to assess outcomes. Of all participants, 11.8% (6/51) reported low total HRQoL scores. Participants’ scores on most HRQoL subscales were comparable to the scores of healthy children. However, compared with solid organ transplant recipients, LDLT recipients scored significantly lower in About My Medicines II (t = 3.092, p = 0.002) and Worry (t = 2.760, p = 0.006). Sleep problems (41.2%) were common among participants. Hierarchical regression analyses showed that SRBD accounted for significant variance in HRQoL on total generic HRQoL (R2 = 0.446, p < 0.001), psychosocial health (R2 = 0.372, p = 0.001), physical health (R2 = 0.345, p = 0.003), total transplant-specific HRQoL (R2 = 0.514, p < 0.001), About My Medicines I (R2 = 0.365, p = 0.013), My Transplant and Others (R2 = 0.334, p = 0.005), Pain and Hurt (R2 = 0.544, p < 0.001), Worry (R2 = 0.401, p = 0.001), Treatment Anxiety (R2 = 0.526, p < 0.001), How I Look (R2 = 0.221, p = 0.040), and Communication (R2 = 0.343, p = 0.012). In conclusion, sleep problems are non-negligible in children after LDLT and predicted significant variance on HRQoL.
Because of the scarcity of donor organs, LDLT has become the most common alternative for children with end-stage liver disease and some metabolic diseases. LDLT comprised 64.8% of all pediatric LT recipients in the last decade, according to a report on pediatric LT from the China Liver Transplantation Registry (http://www.cltr.org/). With advances in surgical techniques, immunosuppressive medications, and post-transplant monitor-
Abbreviations: BMI, body mass index; HRQoL, healthrelated quality of life; LDLT, living donor liver transplantation; LT, liver transplantation; PedsQLTM, Pediatric Quality of Life InventoryTM; PLMS, periodic limb movements during sleep; RLS, restless leg symptoms; SRBD, sleep-related breathing disorder.
Kang He, Conghuan Shen, Xiaosong Chen, Longzhi Han, Zhifeng Xi, Tao Zhou, Jianjun Zhang and Qiang Xia Department of Liver Surgery, Renji Hospital, School of Medicine, Shanghai Jiao Tong University, Shanghai, China
Key words: health-related quality of life – sleep problems – pediatric living donor liver transplantation Qiang Xia, Department of Liver Surgery, Ren Ji Hospital, School of Medicine, Shanghai Jiao Tong University, 1630 Dongfang Road, Shanghai 200127, China Tel.: 8621 68383775 Fax: 8621 58737232 E-mail: [email protected] Accepted for publication 5 May 2015
ing (1), the focus of research has shifted toward recipients’ quality of life (2–7). Increasing evidence indicates that poor sleep quality leads to HRQoL decrements in all children, with or without medical condition (8–10). For children undergoing major surgery, poor sleep quality is common and often associated with post-surgical pain and low HRQoL (11). Previous studies have demonstrated that ameliorating sleep disorders can improve short-term and long-term HRQoL in children (12–14). Moreover, parents of children with severe illnesses often experience deficient sleep and show significant instability in their sleep, related to HRQoL (15). Recently, Fredericks et al. (16) reported that sleep problems are common in pediatric LT recipients and predictive of 547
He et al.
significant variance in HRQoL. However, little information has been reported on sleep problems and HRQoL specifically in pediatric LDLT recipients. This cross-sectional study used both the PedsQLTM 3.0 Transplant Module and PedsQLTM 4.0 Generic Core Scales (17) to investigate Chinese pediatric recipients’ HRQoL. Additionally, the Pediatric Sleep Questionnaire was used to evaluate participants’ quality of sleep after LDLT and its effect on HRQoL. Methods Study population and procedures A convenience sample of pediatric LDLT recipients from Ren Ji Hospital and their parents were enrolled in the study. Ren Ji Hospital (Department of Liver Surgery Shanghai Jiao Tong University Ren Ji School of Medicine) performs more than half of the pediatric liver transplants in China. All recipients more than two yr old who had received LDLT for the first time more than six months earlier were eligible for our study. Re-transplants were excluded. Recipients and their donating parents were seen during a follow-up medical visit after hospital discharge. We conducted a cross-sectional survey of quality of life and sleep problems among pediatric LDLT recipients, which was approved by the institutional review board of Shanghai Jiaotong University School of Medicine. Because all participants were younger than 10 yr old, questionnaires were completed by parents or guardians. This was done during routinely scheduled clinic visits. The vast majority of questionnaires (96% [49/51]) were completed by donating parents. All demographic and medical data were obtained from medical records from the Department of Liver Surgery, Ren Ji Hospital.
Questionnaires PedsQLTM 4.0 Generic Core Scales and PedsQLTM 3.0 Transplant Module were used to measure HRQoL in children. The former one is a generic and standardized questionnaire assessing dimensions of physical, emotional, social, and school functioning using a scale of 0–100, with high scores indicating a high HRQoL. The published cutoff value for PedsQLTM Generic Core Scales is 65.4, with scores lower than 65.4 indicating low total HRQoL (16). The latter tool is a 46-item, transplantspecific questionnaire that includes the following eight sections (17): (i) About My Medicines I (nine items; barriers to medical regimen adherence), (ii) About My Medicines II (eight items; medication side effects), (iii) My Transplant and Others (eight items; social relationships and transplant), (iv) Pain and Hurt (three items; physical discomfort), (v) Worry (seven items; worries related to health status), (vi) Treatment Anxiety (four items; fears regarding medical procedures), (vii) How I Look (three items; impact of transplant on appearance), and (viii) Communication (four items; communication with medical personnel and others regarding transplant issues). With identical format and scoring method to PedsQLTM 4.0 Generic Core Scales, higher scores in PedsQLTM 3.0 Transplant Module reflect better health. The Pediatric Sleep Questionnaire is a validated and parent-completed scale that evaluates sleep problems in children with or without medical comorbidities (18). It encompasses a 22-item SRBD index and a six-item subscale assessing PLMS, RLS, and growing pains. The SRBD index
548
consists of snoring, excessive daytime sleepiness, and behavior subscales. A cutoff score of ≥0.33 is regarded as a positive screen, reflecting that a child is positive for 33% of the symptoms (16, 19). It was translated into Chinese by an investigator followed by backward translations from the Chinese reconciliation version to English by another investigator on our study team as described (20). The Chinese version of PedsQLTM 4.0 Generic Core Scales has been validated linguistically (21). PedsQLTM 3.0 Transplant Module was validated linguistically (English to Chinese), as described in the PedsQL Web site (http:// www.pedsql.org/translations.html). In brief, different forward translations were conducted from English to Chinese followed by backward translations from the Chinese reconciliation version to English. Questionnaires obtained after the backward translations were then tested on a panel of at least five respondents via interviewing.
Statistical analysis Demographic variables were described as median, range, or percentages. Medical data were presented as means and standard deviations. Independent samples t-tests were used to test statistical differences between LDLT recipients and healthy children or solid organ transplant recipients’ scores in HRQoL. Hierarchical multiple regression analyses were used to evaluate the contribution of sleep problems to recipients’ HRQoL in both generic and transplant-specific scales. All statistical analyses were performed using SPSS version 18.0 (SPSS Inc., Chicago, IL, USA) for Windows. Statistical significance was set at p < 0.05.
Results Characteristics of participants
There were in total 51 LDLT recipients included in this study. Demographic and medical-related data are displayed in Table 1. The median age of the recipients was 3.62 yr (range = 2.00–9.27 yr), and the median time since transplantation was 2.23 yr (range = 1.02–7.03 yr). The median height and weight of participants were 100.0 cm (range = 75.0– 148.0 cm) and 16.0 kg (range = 7.5–40.0 kg), and the median calculated BMI was 16.4 kg/m2 (range = 12.5–31.2 kg/m2). About half of the patients were male (53%), and the main diagnosis of the recipients was biliary atresia (96%), with the primary immunosuppressant medicine being tacrolimus (92%). Only 6% (3/51) of recipients had abnormal liver function tests in the past six months, of whom two were re-admitted for treatment. Moreover, 12% (6/51) and 4% (2/51) of enrolled patients were diagnosed with biliary and vascular complication, respectively, since transplantation. In addition, three of the 51 children had experienced acute cellular rejection since LDLT. LDLT recipients’ quality of life assessment using PedsQLTM scales
With published cutoff of 65.4 for PedsQLTM Generic Core Scales (16), 11.8% (6/51) of participants
Quality of life and sleep problems after LDLT Table 1. Characteristics of LDLT recipients (n = 51) Ages at survey (yr), median (range) Time since transplantation (yr), median (range) Sex, n (%) Female Male Height at time of survey (cm), median (range) Weight at time of survey (kg), median (range) BMI at time of survey (kg/m2), median (range) Primary disease, n (%) Biliary atresia Glycogen storage disease CMV-induced liver failure Immunosuppressant medications, n (%) Tacrolimus Cyclosporine Abnormal liver function in the past 6 months, n (%) No Yes Biliary complication since transplantation, n (%) No Yes Vascular complication since transplantation, n (%) No Yes Rejection episodes since transplantation, n (%) No Yes
3.62 (2.00–9.27) 2.23 (1.02–7.03) 24 (47) 27 (53) 100.0 (75.0–148.0) 16.0 (7.5–40.0) 16.4 (12.5–31.2) 49 (96) 1 (2) 1 (2) 47 (92) 4 (8) 48 (94) 3 (6) 45 (88) 6 (12)
Table 2. PedsQLTM 4.0 Generic Core Scales and PedsQLTM 3.0 Transplant Module of LDLT recipients (parent proxy report) LDLT recipients Scale
Number of items
PedsQLTM 4.0 Generic Core Scales Total score 23 Physical health 8 Psychosocial health 15 Emotional functioning 5 Social functioning 5 School functioning 5 PedsQLTM 3.0 Transplant Module Total score 46 About My Medicines I 9 About My Medicines II 8 My Transplant and Others 8 Pain and Hurt 3 Worry 7 Treatment Anxiety 4 How I Look 3 Communication 4
n
Mean
s.d.
51 51 51 51 51 51
82.21 77.45 83.79 80.78 83.24 87.35
13.71 22.60 13.08 19.35 17.26 18.48
51 51 51 51 51 51 51 51 51
75.90 82.80 75.40 75.03 80.23 68.28 66.42 75.16 83.82
15.44 16.62 19.76 19.53 18.56 25.22 28.20 26.06 17.77
49 (96) 2 (4) 48 (94) 3 (6)
reported low total HRQoL. The mean total score of these recipients was 82.21 13.71. As shown in Table 2, physical health and psychosocial health scores were 77.45 22.60 and 83.79 13.08. As to subscales of psychosocial health, emotional, social and school functioning displayed 80.78 19.35, 83.24 17.26 and 87.35 18.48, respectively. Age, sex, time since LDLT, height, or weight was not significantly related to HRQoL. For the PedsQLTM Transplant Module, recipients’ total score was 75.90 15.44. Table 2 presents scores of all transplant-specific subscales. Prevalence of sleep-related symptoms in LDLT recipients
Based on results from the questionnaire reports, LDLT recipients enrolled in this study presented with symptoms of habitual snoring, excessive daytime sleepiness, daytime behavior difficulties, and RLS. Participants displayed SRBD score at 0.31 0.21, indicating that 31% of the subscale items were positive. As mentioned under Methods, 21 participants (41.2%) exceeded the clinical cutoff score of 0.33. Of SRBD index components, the mean snoring subscale score was 0.30 0.26, and 17 participants (33.3%) complained of habitual snoring. The mean excessive daytime sleepiness of all recipients was 0.11 0.16, and three participants (5.9%)
exceeded the clinical cutoff score. The mean behavior index score for the sample of LDLT recipients was 0.53 0.33, with 38 recipients (74.5%) receiving a score suggestive of inattention and hyperactivity. The mean PLMS/RLS index score for LDLT recipients was 0.19 0.21. Significant symptoms of PLMS/ RLS were reported for 12/51 LDLT recipients (23.5%). There were no significant differences across the SRBD, habitual snoring, excessive daytime sleepiness, behavior difficulties, or PLMS/RLS with respect to age, sex, time since LDLT, height, or weight. Effect of sleep problems on HRQoL
Age, sex, time since LDLT, height, and weight did not significantly affect scores in HRQoL, PedsQLTM 4.0 Generic Core Scales, and PedsQLTM 3.0 Transplant Module. Hierarchical regression analyses were performed to evaluate the role of sleep problems in HRQoL of LDLT recipients. Age, time since LDLT, height, and weight were entered as block 1, and the SRBD scales were entered as block 2. First, with respect to relationship between PedsQLTM 4.0 Generic Core Scales and SRBD (Table 3), we found that regression models for the psychosocial health, physical health, and total HRQoL summary scales were not significant. Age at LDLT, time since LDLT, height, and weight did not account for significant variance on all HRQoL scales (p > 0.05). Additionally, SRBD accounted for significant variance on PedsQL summary scales measuring recipients’ 549
He et al. Table 3. Regression analyses of LDLT recipients’ scores in PedsQLTM 4.0 Generic Core Scales and SRBD
Model
Scale
Step
Variable
1
Total HRQoL
1
Age at LDLT Time since LDLT Height Weight Snoring Excessive daytime sleepiness Behavior PLMS/RLS Age at LDLT Time since LDLT Height Weight Snoring Excessive daytime sleepiness Behavior PLMS/RLS Age at LDLT Time since LDLT Height Weight Snoring Excessive daytime sleepiness Behavior PLMS/RLS Age at LDLT Time since LDLT Height Weight Snoring Excessive daytime sleepiness Behavior PLMS/RLS Age at LDLT Time since LDLT Height Weight Snoring Excessive daytime sleepiness Behavior PLMS/RLS Age at LDLT Time since LDLT Height Weight Snoring Excessive daytime sleepiness Behavior PLMS/RLS
2
2
Psychosocial health
1
2
3
Physical functioning
1
2
4
Emotional functioning
1
2
5
Social functioning
1
2
6
School functioning
1
2
t for within-step predictors
b 0.299 0.076 0.187 0.168 0.301 0.282 0.304 0.043 0.333 0.125 0.178 0.171 0.254 0.218 0.279 0.038 0.146 0.032 0.146 0.111 0.29 0.305 0.253 0.17 0.23 0.101 0.147 0.112 0.183 0.213 0.271 0.097 0.377 0.044 0.316 0.295 0.338 0.277 0.012 0.158 0.114 0.332 0.072 0.031 0.033 0.018 0.32 0.169
0.981 0.318 0.603 0.519 2.146* 2.046* 2.112* 0.283 1.089 0.521 0.569 0.526 1.7 1.488 1.821 0.238 0.482 0.135 0.472 0.344 1.899 2.036* 1.618 1.034 0.772 0.43 0.482 0.354 1.245 1.477 1.798 0.618 1.32 0.194 1.084 0.972 2.519* 2.106* 0.084 1.097 0.399 1.477 0.247 0.101 0.199 0.113 1.891 0.953
R2
R2 change for step
F change
0.04
0.04
0.476
0.753
0.446
0.406
7.684
