Physical activity and its correlates in a pediatric solid‐organ transplant population

PA has been shown to have benefits in SOT patients. Studies assessing physical activity levels and its correlates in a pediatric solid‐organ transplant population are limited. The aim of this study was to assess PA levels and identify baseline and contemporaneous factors that contribute to PA in a pediatric SOT population. A retrospective cross‐sectional review was performed on 58 pediatric transplant patients (16 heart, 29 kidney, and 13 liver transplant). PA was measured by PAQ‐C or PAQ‐A. Demographics, baseline, and contemporaneous factors were collected. There were no significant differences in baseline and contemporaneous characteristics between heart, kidney, and liver transplant recipients. SOT recipients were 15.2 [12.3‐17.3] years old at time of completing the PAQ. Median PAQ score was 2.2 [1.7‐2.9]. There were no significant differences in PAQ scores between organ transplant type or between genders. Lower PAQ score was associated with sensory disability (9 vs 49 without disability; P = <.01) and age at time of completing the PAQ (r = ?.50, P = <.01). These results suggest that older age at time of completing the PAQ and presence of sensory disability may influence PA levels in the pediatric SOT population.     

Physical activity and aerobic fitness in children after liver transplantation

To determine physical activity (PA), aerobic fitness, muscle strength, health‐related quality of life (HRQOL), fatigue, and participation in children after liver transplantation. Children, 6‐12 years, at least one year after liver transplantation, participated in this cross‐sectional study. Measurements: Time spent in moderate to vigorous PA (MVPA) was measured using an accelerometer, and aerobic fitness (VO_{2 peak}) was measured by cardiopulmonary exercise testing. Muscle strength was measured by hand‐held dynamometry. Fatigue was measured using the multidimensional fatigue scale, and HRQOL with the Pediatric Quality of life Core scales and leisure activities was measured using the Children's Assessment of Participation and Enjoyment. Outcomes (medians and interquartile range (IQR)) were compared to norm values. Twenty‐six children participated in this study (14 boys, age 9.7 years, IQR 7.7;11.4). Children spent 0.8 hours/d (IQR 0.6;1.1) on MVPA. One child met the recommendation of at least 1 hour of MVPA every day of the week. Aerobic fitness was similar to norms (VO_{2 peak} 1.4 _L/min, IQR 1.1;1.7, Z‐score ?0.3). Z‐scores of muscle strength ranged between ?1.4 and ?0.4 and HRQOL and fatigue between ?2.3 and ?0.4. Participation was similar to published norms (Z‐scores between ?0.6 and 0.6). Young children after liver transplantation have similar MVPA patterns and aerobic fitness compared to published norms. Despite lower HRQOL, more fatigue, and less muscle strength, these children have similar participation in daily activities. Although children do well, it remains important to stimulate PA in children after liver transplantation in the context of long‐term management.     

Transient elastography assessment of liver allograft fibrosis in pediatric transplant recipients

TE measures liver stiffness to assess fibrosis. Its use in post‐transplant patients was reported in few small pediatric studies. We evaluated TE ability to predict liver graft fibrosis in a large cohort while comparing it to the performance of APRI and FIB‐4. We also investigated the effect of graft type on LSMs. Patients at Boston Children's Hospital who underwent LT and LSM ≤ 1 year from biopsy (2007‐2018) were eligible. Ninety‐four patients (45%M) aged 1‐21 years (89% < 18 years; 13% < 2 years) were eligible. Median time between transplant/biopsy and LSM was 5.1 years and 52 days, respectively. Thirty‐nine percent received whole‐liver grafts, 54% TV grafts, and 6% as part of MV. At LSM, median ALT was 25 [IQR 16‐33] IU/L. Twenty‐one percent had METAVIR ≥ F2. LSM was statistically higher among those with significant fibrosis (METAVIR ≥ F2) compared to those with METAVIR F0/F1 (median [IQR] 7.5 [4.6, 13.6] vs 5.1 [4.0, 6.4] kPa, respectively) (P = .005 by Wilcoxon rank‐sum test). APRI and FIB‐4 distributions were not different across METAVIR stages. The AUROC for LSM was 0.71 (95% CI 0.56‐0.85) with an optimal cut‐point of 6.5 kPa. Graft type had no influence on the AUROC for LSM. TE is useful for assessing significant graft fibrosis in children and young adult LT recipients and performs better than APRI and FIB‐4. TV grafts demonstrate similar correlation with histology as whole‐liver grafts.     

Child and parental perspectives of multidimensional quality of life outcomes after kidney transplantation

Anthony SJ, Hebert D, Todd L, Korus M, Langlois V, Pool R, Robinson LA, Williams A, Pollock‐BarZiv SM. Child and parental perspectives of multidimensional quality of life outcomes after kidney transplantation.
Pediatr Transplantation 2010:14:249–256. © 2009 John Wiley & Sons A/S. Abstract: Kidney transplantation is an optimal therapy for pediatric patients with end‐stage kidney disease. This pilot study sought to examine multidimensional QOL outcomes after kidney transplant using VAQOL and General Health, the PedsQL 4.0, PedsQL End Stage Renal Disease Module, and Impact on Family Module. Sample included 12 adolescents aged 13–18 yr and their parent; three children aged eight to 12 yr and their parent; and six parents of children aged two to seven yr. All were 73 months post transplant. The median age at transplant was 9.3 yr and median time since transplant was 3.2 yr. VAQOL mean was 7.7/10 (child report) and 7.3/10 (parent report); the mean general health was 7.4/10. High levels of fatigue (≥5/10) were reported in 43%. PedsQL subscale mean values were lower than healthy reference scores. PedsQL Renal Module demonstrated great concern with physical appearance and physical symptoms (thirst and headaches), difficulty with peer and family interaction, and school disruption. Low scores on parental emotional function depict the negative impact of transplant on family functioning. Discordance exists between child and parental reports of QOL. Prospective studies are needed to explore multidimensional QOL to improve long‐term outcomes after pediatric kidney transplant.     

Long‐term outcome and management of hepatopulmonary syndrome in children

Al‐Hussaini A, Taylor RM, Samyn M, Bansal S, Heaton N, Rela M, Mieli‐Vergani G, Dhawan A. Long‐term outcome and management of hepatopulmonary syndrome in children.
Pediatr Transplantation 2010:14:276–282. © 2009 John Wiley & Sons A/S. Abstract: We aim to report a single center experience of the management and long term outcome of HPS in pediatric liver transplant recipients. A retrospective review of children with HPS from 1990 to 2004. Inclusion criteria: liver disease or portal hypertension, hypoxemia (PaO₂ < 70 mmHg or SaO₂ < 95%) and intrapulmonary shunting documented by macroaggregated albumin scan ratio of >4% (classified mild group [<20%], moderate group [20–40%] and severe group [>40%]). Resolution of HPS post‐liver transplant was defined as PaO₂ > 70 mmHg or SaO₂ > 95%. Eighteen children (six male [34%], median age at diagnosis of HPS 8.6 [1–15.5] yr) had HPS: biliary atresia (n = 8), idiopathic biliary cirrhosis (n = 4), progressive intrahepatic cholestasis (n = 2), miscellaneous (n = 4). The majority had mild shunting (n = 8). Fourteen underwent transplantation with resolution of HPS in 13. Six developed complications: hepatic artery thrombosis (n = 4), biliary (n = 2). Four children died (28%), two pretransplant. There was a tendency towards shunt fraction worsening to a slower degree over time. One‐yr survival rate post‐transplant was 93%. Median PaO₂ was significantly lower in non‐survivors compared to survivors (43 vs. 55.2 mmHg, p = 0.03). There was correlation between oxygen parameters pretransplant and time to HPS resolution post‐transplant. HPS is reversible after transplant, but is associated with increasing mortality and morbidity.     

Measuring family management of transplant tasks: The transplant responsibility questionnaire

Little is known about how parents and youth perceive their roles in post‐transplant management and how this relates to post‐transplant adherence. The goals of this study are to (1) describe a new measure, the TRQ, (2) to describe parent and child performance on the TRQ, and to (3) determine the relationship between the TRQ and adherence. We hypothesized that older youth would describe higher post‐transplant self‐care behaviors, parents would underestimate youth self‐care, and greater parent involvement would be associated with better adherence. Participants included 59 parent–child dyads. Inclusion criteria included: (i) youth aged 7–18 yr and (ii) at least three months post‐kidney or post‐liver transplant. Parents and youth completed the TRQ, and adherence was measured by s.d. of sequential immunosuppressant blood levels. Youth perceived greater levels of self‐care than their parents perceived. Older youth reportedly engaged in more self‐care than younger youth. Less than 25% of the sample was non‐adherent, and non‐adherence was unrelated to performance on the TRQ. The TRQ may have utility as a clinical tool to address areas for improvement in youth self‐care. The high degree of parental involvement likely explains the high degree of adherence in this sample.     

Exploring the Role of Physiotherapists in the Care of Children with Autism Spectrum Disorder

Aims: Children with autism spectrum disorder (ASD) are less likely to participate in physical activity than their age related peers, and it has been suggested that physiotherapists (PT) could potentially facilitate their participation. Currently, no research has examined PTs’ potential role in enhancing physical activity (PA) participation. The purpose of this qualitative study was to examine PTs experiences and perspectives of working with children with ASD, and to explore potential directions for PTs to potentially increase PA. Methods: Ten pediatric PTs in Canada were interviewed, and data were analyzed using thematic analysis. Results: Three themes were identified: the role of PT, perceived lack of expertise, confidence and training, and structural and systemic barriers. The accounts highlight the social and institutional complexity and constraints in PTs potential promotion of PA for children with ASD. Participants supported a primarily consultative role whereby PTs could educate and partner with parents, teachers, and community service providers to enhance gross motor development and individualize PA needs. Conclusions: These findings indicate how PTs might be involved in enhancing PA among children with ASD.     

Stable pediatric kidney transplant recipients run higher urine indoleamine 2, 3 dioxygenase (IDO) levels than healthy children

Immune cells utilize the IDO enzymatic conversion of trp to kyn to determine T‐cell activation vs. anergy/apoptosis. In prior studies, urine IDO levels were higher in rejecting renal allografts than in stable state. However, urine IDO levels in healthy subjects or children are unknown. As a corollary to a larger longitudinal and prospective study of serum and urine IDO levels for transplant immune monitoring, here, we analyzed the difference between urine IDO levels in stable post‐transplant vs. healthy children. IDO levels were measured by tandem mass spectrometry and expressed as kyn/trp ratios. We compared one‐time urine samples, from 34 well children at general pediatric clinics, to the first‐month post‐transplant urine samples from 18 children, while in stable state (no acute rejection or major infection event in next 30 days). Urine kyn/trp ratios were significantly higher in stable children in first‐month post‐kidney transplant (median 16.6, range 3.9–44.0) vs. healthy children (median 9.2, range 3.51–17.0; p = 0.0057 by nonparametric Mann–Whitney test). Higher urine IDO levels even with stable transplant suggest a continuous ongoing low‐grade allorecognition/inflammatory process. Our data also provide baseline urine IDO levels in healthy subjects for use in future studies.     

AST‐to‐platelet ratio index in non‐invasive assessment of long‐term graft fibrosis following pediatric liver transplantation

Long‐term graft fibrosis occurs in the majority of pediatric liver transplant recipients. Serial biopsies to monitor graft health are impractical and invasive. The APRI has been evaluated in pediatric liver disease, but not in the context of post‐transplantation fibrosis. We aimed to investigate the validity of APRI as a predictor of long‐term graft fibrosis in pediatric liver transplant recipients. This was a retrospective, observational study of a cohort of children who underwent liver transplantation at King's College Hospital between 1989 and 2003, with a relevant dataset available. Protocol liver biopsies were performed at 10‐yr follow‐up and fibrosis was graded using the Ishak scoring system, with S3‐6 denoting “significant fibrosis.” APRI was calculated concurrently with biopsy. A total of 39 asymptomatic patients (20 males; median age at transplant, 1.43 yr) underwent protocol liver biopsies at a median of 10.39 yr post‐transplantation. APRI was associated with significant fibrosis (p = 0.012). AUROC for APRI as a predictor of significant fibrosis was 0.74 (p = 0.013). The optimal cutoff APRI value for significant fibrosis was 0.45 (sensitivity = 0.67; specificity = 0.79; PPV = 0.67; NPV = 0.79). APRI appears to be a useful non‐invasive adjunct in the assessment of significant graft fibrosis in the long‐term follow‐up of pediatric liver transplant survivors.     

Donor‐to‐recipient weight ratio is a risk factor for hepatic artery thrombosis after whole‐liver transplantation in children under 25 kg

Hepatic artery thrombosis (HAT) following pediatric liver transplantation increases morbidity and risk of graft failure. We performed a retrospective chart review of all patients who underwent deceased‐donor liver transplantation from August 2002 to July 2016. Multi‐organ transplant recipients were excluded. We examined the incidence of HAT at our institution and sought to identify associated donor or recipient risk factors. A total of 127 deceased‐donor liver transplant patients with a median age of 1.7 years (IQR 0.67‐6.7) were identified. Of those, 14 developed HAT, all weighing under 25 kg. Among 100 patients under 25 kg, whole‐liver graft recipients had an odds ratio of 3.98 (95% confidence interval [CI]: 1.03, 15.34; P = .045) for developing HAT compared with split‐liver graft recipients. Within the whole‐liver recipient group under 25 kg, 11 patients developed HAT with a median donor‐to‐recipient ratio (DRWR) of 0.9 (IQR: 0.7‐1.2) compared with a median DRWR of 1.4 (IQR: 1.1‐1.9) for those who did not develop HAT. Multivariate analysis showed DRWR to be an independent risk factor for HAT in patients weighing under 25 kg who received whole organ grafts, with an odds ratio of 3.89 (95% CI: 1.43, 10.54; P = .008) for each 0.5 unit decrease in DRWR. Our results suggest that in recipients under 25 kg 1) split‐liver grafts may have a lower rate of HAT and 2) selecting whole organ donors with a higher DRWR may decrease the incidence of HAT.     

Outcomes of matched sibling donor bone marrow transplantation in children using single‐agent calcineurin inhibitors as prophylaxis for graft versus host disease

1 Background

Optimal graft versus host disease (GVHD) prophylaxis prevents severe manifestations without excess immunosuppression. Standard prophylaxis includes a calcineurin inhibitor (CNI) with low‐dose methotrexate. However, single‐agent CNI may be sufficient prophylaxis for a defined group of patients. Single‐agent CNI has been used for GVHD prophylaxis for human leukocyte antigen (HLA)‐matched sibling donor (MSD) bone marrow transplants (BMTs) in young patients at the Children's Hospital of Philadelphia for over 20 years. Here, we describe outcomes using this prophylactic strategy in a recent cohort.

2 Procedure

We performed a single‐institution chart review and retrospective analysis of consecutive children undergoing MSD BMT who received single‐agent CNI for GVHD prophylaxis between January 2002 and December 2014.

3 Results

Fifty‐two children with a median age of 6.1 years (interquartile range [IQR] 2.5–8.3) and donor age of 6 years (IQR 3–10), with malignant and nonmalignant diseases (n = 35 and 17, respectively) were evaluated. Forty‐three (82.6%) received oral prophylaxis with single‐agent tacrolimus after initial intravenous therapy. Rates of GVHD were consistent with reported rates on dual prophylaxis: the overall incidence of grades 2–4 acute GVHD was 25.5%, grades 3–4 GVHD 9.8%, and chronic GVHD 10.4%. The cumulative incidence of relapse among children with malignancy was 20% at a median of 237 days (IQR 194–318) post‐transplant. Two‐year overall survival was 82.7% (95% confidence interval [CI]: 69.4–90.6%) and event‐free survival was 78.9% (95% CI: 65.1–87.7%). No patient experienced graft failure.

4 Conclusions

Single‐agent CNI is a safe, effective approach to GVHD prophylaxis in young patients undergoing HLA‐identical sibling BMT. Additionally, single‐agent oral tacrolimus is a reasonable alternative to cyclosporine in this population.     

Long‐term outcomes of liver transplantation for hepatoblastoma: A single‐center 14‐year experience

HB is the most common primary liver tumor in children. Complete tumor excision, either by partial resection or by total hepatectomy and liver transplantation, in combination with chemotherapy provides the best chance for cure. We performed a retrospective analysis of patients who underwent liver transplantation for HB and herein present our 14‐year single‐institution experience. Twenty‐five patients underwent liver transplantation for HB at a median age of 26 months (IQR: 15‐44). Graft survival was 96%, 87%, and 80% at 1, 3, and 5 years, respectively. There were four patient deaths, three of them due to disease recurrence within the first year post‐transplant. Ten‐year overall survival was 84%. Three recipients initially presented with pulmonary metastases and underwent resection of metastatic disease, of which two are alive at 3.9 years. Of three patients who underwent salvage transplants, two are alive at 1.5 years after transplant. Non‐survivors were associated with lower median alpha fetoprotein value at presentation compared to survivors (21 707 vs 343 214; P = .04). In conclusion, the overall long‐term outcome of primary liver transplantation for HB is excellent. Tumor recurrence was the highest contributor to mortality. Even patients with completely treated pulmonary metastases prior to transplant demonstrated a favorable survival.     

Early changes in cell‐free DNA levels in newly transplanted heart transplant patients

Heart transplantation is a well‐established therapy for end‐stage heart failure in children and young adults. The highest risk of graft loss occurs in the first 60 days post‐transplant. Donor fraction of cell‐free DNA is a highly sensitive marker of graft injury. Changes in cell‐free DNA levels have not previously been studied in depth in patients early after heart transplant. A prospective study was conducted among heart transplant recipients at a single pediatric heart center. Blood samples were collected from children and young adult transplant patients at three time points within 10 days of transplantation. DF and total cell‐free DNA levels were measured using a targeted method (myTAI_HEART). In 17 patients with serial post‐transplant samples, DF peaks in the first 2 days after transplant (3.5%, [1.9‐10]%) and then declines toward baseline (0.27%, [0.19‐0.52]%) by 6‐9 days. There were 4 deaths in the first year among the 10 patients with complete sample sets, and 3 out of 4 who died had a late rise or blunted decline in donor fraction. Patients who died trended toward an elevated total cell‐free DNA at 1 week (41.5, [34‐65] vs 13.6, [6.2‐22] P = .07). Donor fraction peaks early after heart transplant and then declines toward baseline. Patients without sustained decline in donor fraction and/or elevated total cell‐free DNA at 1 week may have worse outcomes.     

Physical activity and its correlates in children and adolescents post‐liver transplant

The health benefits of PA are well established for healthy and chronically ill children. This study objectively measures physical fitness and PA levels in children PLT and explores potential correlates and perceived barriers impacting their PA. A total of 23 children (16 females, mean 14.01 ± 2.49 yrs) >1 yr PLT were assessed for peak oxygen consumption (VO₂peak), muscle strength, endurance, and flexibility. MVPA and steps/day were determined with accelerometry. Additionally, SE, perceived fatigue, and barriers and benefits of PA were examined. VO₂peak (mean 33. 2 ± 7.61 mL/kg/min; 77.0 ± 15.6% predicted) and PA (average 6841 ± 2299 steps/day) were below healthy norms. MVPA (31.6 ± 16.1 min/day) was lower than national guidelines. Six participants (30%) attained criterion standards for abdominal strength and one participant (5%) for push‐ups. Fatigue and SE were lower than reported levels in healthy children. A commonly perceived barrier to PA was “I am tired.” A positive correlation was shown between SE and MVPA (r = 0.57, p = 0.007), SE and fatigue (r = 0.54, p = 0.01), and PELD score and fatigue (r = 0.66, p = 0.007). Children PLT demonstrate below normal levels of PA and aerobic capacity. SE is a modifiable correlate of their PA. Further investigation of the impact of PA correlates can guide the development of future innovative PA intervention strategies in children PLT.     

Health-related quality of life and ambulation in children with myelomeningocele in a Swedish population

Aim: The aim was to study health‐related quality of life (HRQL) in Swedish children with myelomeningocele (MMC) with respect to ambulatory function. Methods: A physical examination of the lower limbs was performed, and occurrence of orthopaedic deformities and shunted hydrocephalus was documented. A questionnaire on general health‐related quality of life Child Health Questionnaire‐50 Parent Form (CHQ‐PF50) was answered by the parents of 62 children, mean age 12.5 (3.1) years. Results: The non‐ambulatory children had significantly more frequent spasticity in the lower limbs, more often joint contractures as well as hip dislocation or spine deformity compared with ambulating patients. Thirty‐two per cent of the ambulators managed without wheelchair use. All non‐ambulators were wheelchair users, of which 60% used both a manual and a powered wheelchair. The children with MMC perceived significantly lower HRQL of all subscales of CHQ compared with the healthy control group. Physical function was significantly higher in ambulatory patients, PF = 57.1 compared with 22.2 for non‐ambulatory patients. Conclusion: A Swedish population of children with MMC perceived lower HRQL compared with healthy children, but similar HRQL irrespective of ambulatory function except for the physical domain was reported.     

Perioperative renal transplantation management in small children using adult‐sized living or deceased donor kidneys: A single‐center experience

Kidney transplantation remains the treatment of choice for children with ESRD. Optimal perioperative management is critical in small recipients of ASK to assure adequate graft perfusion. We present a single‐center experience outlining management for patients weighing <20 kg who underwent primary renal transplantation with ASKs between 2007 and 2016. Sixty‐three patients met study criteria and underwent 34 living‐related, six living‐unrelated, and 23 deceased donor kidney transplants. Median age and weight at transplant were 25 months (IQR 18‐37 months; range 11 months‐6 years) and 11.0 kg (IQR 9.2‐14.5 kg; range 7.1‐19.5 kg). Eighty‐nine percent of patients required vasoactive agents intra‐operatively, with twenty patients requiring prolonged vasoactive agents post‐operatively. Intra‐operatively, patients received 51.9 mL/kg of crystalloid, 27.3 mL/kg of 5% albumin, and 13.6 mL/kg of packed red blood cells. Most (93.7%) patients were extubated on POD#0. Weights peaked on post‐operative days three through five. Over a median follow‐up of 49 months (IQR 31‐86 months; range 0‐130 months), four grafts were lost, two due to thrombosis and two secondary to chronic rejection. There was one patient death six months post‐transplant due to causes unrelated to transplantation. Graft survival at 1, 5, and 10 years was 98.4%, 96.6%, and 84.2%, respectively. Of surviving allografts, the median 1, 5, and 10 years post‐transplant eGFR was 122.9, 90.0, and 59.2 mL/min/1.73 m² as determined by the 2009 Schwartz formula. Renal transplantation in small children using ASKs requires meticulous perioperative management including adequate fluid resuscitation and judicious use of pressors to assure adequate graft perfusion. The use of ASKs from living or deceased donors results in satisfactory short and long‐term outcomes.     

Overweight and obesity in pediatric liver transplant recipients: prevalence and predictors before and after transplant, United Network for Organ Sharing Data, 1987-2010

Perito ER, Glidden D, Roberts JP, Rosenthal P. Overweight and obesity in pediatric liver transplant recipients: Prevalence and predictors before and after transplant, United Network for Organ Sharing Data, 1987–2010.
Pediatr Transplantation 2012: 16: 41–49. © 2011 John Wiley & Sons A/S. Abstract: Obesity is extremely common in adult liver transplant recipients and healthy U.S. children. Little is known about the prevalence or risk factors for post‐transplant obesity in pediatric liver transplant recipients. UNOS data on all U.S. liver transplants 1987–2010 in children 6 months–20 yr at transplant were analyzed. Subjects were categorized as underweight, normal weight, overweight, or obese by CDC guidelines. Predictors of weight status at and after transplant were identified using multivariate logistic regression. Of 3043 children 6–24 months at transplant, 14% were overweight. Of 4658 subjects 2–20 yr at transplant, 16% were overweight and 13% obese. Children overweight/obese at transplant were more likely to be overweight/obese at one, two, and five yr after transplant in all age groups after adjusting for age, ethnicity, primary diagnosis, year of transplant, and transplant type. Weight status at transplant was not associated with overweight/obesity by 10 yr after transplant. The prevalence of post‐transplant obesity remained high in long‐term follow‐up, from 20% to 50% depending on age and weight status at transplant. Weight status at transplant is the strongest predictor of post‐transplant overweight/obesity. To optimize long‐term outcomes in pediatric liver transplant recipients, monitoring for obesity and its comorbidities is important.     

Why don’t families initiate treatment? A qualitative multicentre study investigating parents’ reasons for declining paediatric weight management

BACKGROUND:Many families referred to specialized health services for managing paediatric obesity do not initiate treatment; however, reasons for noninitiation are poorly understood.OBJECTIVE:To understand parents’ reasons for declining tertiary-level health services for paediatric weight management.METHOD:Interviews were conducted with 18 parents of children (10 to 17 years of age; body mass index ≥85th percentile) who were referred for weight management, but did not initiate treatment at one of three Canadian multidisciplinary weight management clinics. A semi-structured interview guide was used to elicit parents’ responses about reasons for noninitiation. Interviews were audio-recorded and transcribed verbatim. Data were managed using NVivo 9 (QSR International, Australia) and analyzed thematically.RESULTS:Most parents (mean age 44.1 years; range 34 to 55 years) were female (n=16 [89%]), obese (n=12 [66%]) and had a university degree (n=13 [71%]). Parents’ reasons for not initiating health services were grouped into five themes: no perceived need for paediatric weight management (eg, perceived children did not have a weight or health problem); no perceived need for further actions (eg, perceived children already had a healthy lifestyle); no intention to initiate recommended care (eg, perceived clinical program was not efficacious); participation barriers (eg, children’s lack of motivation); and situational factors (eg, weather).CONCLUSION:Physicians should not only discuss the need for and value of specialized care for managing paediatric obesity, but also explore parents’ intention to initiate treatment and address reasons for noninitiation that are within their control.     

Parent perspectives on decisions to participate in a phase I hepatocyte transplant trial

We examined factors that affect decision‐making for families presented with a phase I clinical trial of hepatocyte transplant as a potential alternative to liver transplant for their children among two groups: (i) families who were actually offered enrollment in the hepatocyte trial and; (ii) families whose children had liver transplants before the trial was available. We conducted semi‐structured interviews about actual and hypothetical decision‐making regarding trial participation and used grounded theory analysis to identify common themes. The most common motivator for participation was decline in the child's health. The most common deterrent was lack of data from prior hepatocyte transplants, particularly when compared with data available about liver transplant. Interviewees’ point of comparison for evaluating relative benefits and risks of hepatocyte transplant oscillated between the alternative of doing nothing while waiting for a liver (the relevant alternative) vs. the alternative of getting a liver. These results suggest that families’ reluctance to participate may result from misconceptions about severity of the child's disease, underestimating risks of liver transplant, or confusion about the role of hepatocyte transplant in the treatment pathway. Clarification of available treatment alternatives and associated risks as part of informed consent may improve the quality of decision‐making regarding trial enrollment.