Health-related quality of life 6 months after pediatric intensive care unit admission for bronchiolitis: a prospective single-center cohort study.

Health-Related Quality of Life (HRQoL) after Pediatric Intensive Care Unit (PICU) admission is considered a valuable outcome measure. Yet, data on HRQoL after PICU admission are scarce and often collected in heterogeneous patient groups. The current study aimed to evaluate HRQoL in children with bronchiolitis 6 months after PICU admission, which represents a homogenous patient group. This study was conducted at the Radboud University Medical Centre in the Netherlands. Children admitted to the PICU between November 2019 and April 2020 were eligible. HRQoL was assessed with the "TNO-AZL Preschool children Quality of Life" (TAPQOL) questionnaire and compared to Dutch normative data. Lower scores represent worse HRQoL. HRQoL was assessed in 34 children (response rate 81%), mean age at assessment was 7.6 months (SD 2.5 months), and median length of stay was 5 days (range 1-17). Parents reported significant lower scores on stomach problems (p < 0.001; d = 0.8) and lung problems (p < 0.001; d = 1.2) and significant higher scores on appetite (p < 0.001; d = 0.6) and problem behavior (p < 0.001; d = 0.5) compared to normative data. Effect sizes were moderate to large. CONCLUSION: Significant differences in several HRQoL domains were found after PICU admission for bronchiolitis compared to normative data. Whereas the domains lung and stomach problems showed significantly impaired scores, most domains revealed HRQoL levels comparable with healthy peers. This study may contribute to the optimization of HRQoL PICU outcomes by highlighting specific HRQoL domains to focus on at admission and during follow-up. WHAT IS KNOWN: • With the decline in PICU mortality, HRQoL became an important outcome measure. Yet, the currently limited number of studies on HRQoL outcomes often involve heterogeneous patient groups. • Bronchiolitis is one of the most frequent reasons for PICU admission, and although a significant part of children admitted for bronchiolitis has a medical history, compared with other reasons for PICU admission, this patient group is relatively homogeneous in terms of age, disease course, and treatment. WHAT IS NEW: • In the present study, six months after PICU admission for bronchiolitis, children scored differently on multiple HRQoL domains compared to healthy peers. • Significantly impaired HRQoL scores were reported on lung and stomach problems in comparison to normative data.

Sugarsquare, a Web-Based Patient Portal for Parents of a Child With Type 1 Diabetes: Multicenter Randomized Controlled Feasibility Trial.

BACKGROUND: Raising a child with type 1 diabetes (T1D) means combining the demands of the disease management with everyday parenting, which is associated with increased levels of distress. A Web-based patient portal, Sugarsquare, was developed to support parents, by providing online parent-professional communication, online peer support and online disease information. OBJECTIVE: The first aim of this study was to assess the feasibility of conducting a multicenter, randomized controlled trial in Dutch parents of a child with T1D. The second aim was to assess the feasibility of implementing Sugarsquare in clinical practice. METHODS: The parents of 105 children (N=105) with T1D below the age of 13 participated in a 6-month multicenter randomized controlled feasibility trial. They were randomly assigned to an experimental (n=54, usual care and Sugarsquare) or a control group (n=51, usual care). Attrition rates and user statistics were gathered to evaluate feasibility of the trial and implementation. To determine potential efficacy, the parenting stress index (PSI-SF) was assessed at baseline (T0) and after 6 months (T1). RESULTS: Of a potential population of parents of 445 children, 189 were willing to participate (enrollment refusal=57.5%, n=256), 142 filled in the baseline questionnaire (baseline attrition rate=25%, n=47), and 105 also filled in the questionnaire at T1 (post randomization attrition rate during follow-up=26%, n=32). As such, 24% of the potential population participated. Analysis in the experimental group (n=54) revealed a total of 32 (59%) unique users, divided into 12 (38%) frequent users, 9 (28%) incidental users, and 11 (34%) low-frequent users. Of the total of 44 professionals, 34 (77%) logged in, and 32 (73%) logged in repeatedly. Analysis of the user statistics in the experimental group further showed high practicability and integration in all users, moderate acceptability and demand in parents, and high acceptability and demand in health care professionals. Baseline parenting stress index scores were related to the parents' frequency of logging on (ρ=.282, P=.03) and page-views (ρ=.304, P=.01). No significant differences in change in parenting stress between experimental and control group were found (F3,101=.49, P=.49). CONCLUSIONS: The trial can be considered feasible, considering the average enrollment refusal rate, baseline attrition rate and postrandomization attrition rate, compared to other eHealth studies, although lower than hypothesized. Implementing Sugarsquare in clinical practice was partly feasible, given moderate demand and acceptability in parent users and lack of potential efficacy. Parents who reported higher levels of parenting stress used Sugarsquare more often than other parents, although Sugarsquare did not reduce parenting stress. These results indicate that Web-based interventions are a suitable way of providing parents of children with T1D with additional support. Future studies should determine how Sugarsquare could reduce parenting stress, for instance by adding targeted interventions. Factors potentially contributing to successful implementation are suggested. TRIAL REGISTRATION: Nederlands Trial Register Number: NTR3643; http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=3643 (Archived by WebCite at http://www.webcitation.org/6qihOVCi6).

Behavioral, cognitive, and motor performance and physical development of five-year-old children who were born after intracytoplasmic sperm injection with the use of testicular sperm.

OBJECTIVE: To evaluate at the age of 5 years the behavioral, cognitive, and motor performance and physical development of children born after testicular sperm extraction (TESE) and intracytoplasmic sperm injection (ICSI). DESIGN: A prospective longitudinal cohort study. SETTING: Two university medical centers. PATIENT(S): A total of 103 5-year-olds who were born after TESE-ICSI. INTERVENTION(S): The follow-up of the children was performed by questionnaires at birth and again at 1 year and at 4 years of age. Five-year-old children were invited for individual assessment. Behavioral performance was assessed with the use of the Child Behavior Checklist for parents and teachers. Cognitive performance was assessed with the use of the Dutch Wechsler Preschool and Primary Scale of Intelligence test, 3rd version. Motor performance was assessed with the use of the Dutch Movement Assessment Battery for Children, 2nd version. Physical development was assessed by means of physical examination and medical history. MAIN OUTCOME MEASURE(S): Behavioral, cognitive, and motor performance and physical development. RESULT(S): Eighty-nine children were completely assessed, and 14 were partially assessed at the age of 5 years. The 5-year-old cohort assessed significantly better on behavioral and cognitive performance and significantly worse on motor performance-but still in the normal range-compared with the theoretic distribution in the general population. Four children (3.8%) of the 5-year-old cohort had developmental problems/delays. Two of them were previously diagnosed with a form of autism (pervasive developmental disorder-not otherwise specified). Two children had developmental problems based on our behavioral, cognitive, and/or motor assessments. CONCLUSION(S): The long-term effects on development and health in children born after TESE-ICSI procedures seem to be reassuring.

Parents' experiences, needs, and preferences in pediatric diabetes care: Suggestions for improvement of care and the possible role of the Internet. A qualitative study.

PURPOSE: To investigate the needs and preferences of parents of children with type 1 diabetes (T1D) concerning pediatric diabetes care and use of Internet in care. DESIGN AND METHODS: Parents of 34 children, aged 2-12, with T1D participated in seven focus group interviews. RESULTS: Analysis revealed provision of tailored care, disease information, peer support, and accessibility of healthcare professionals as major needs in parents. Internet could be used to satisfy these needs. PRACTICAL IMPLICATIONS: According to parents, diabetes teams should focus on the impact of the disease, parents' experience, and the child's development, and provide online professional and peer support.

The interrelationships among paternal and maternal parenting stress, metabolic control, and depressive symptoms in adolescents with type 1 diabetes mellitus.

OBJECTIVE: To examine the relationship between paternal and maternal parenting stress, metabolic control, and depressive symptoms in adolescents with type 1 diabetes mellitus (T1DM). METHODS: 151 adolescents with T1DM (mean age 14.9 ± 1.7 years) and a comparison group (n = 122) reported their depressive symptoms and behavior problems. Mothers (T1DM n = 126; comparison group n = 106) and fathers (T1DM n = 103; comparison group n = 55) each reported parenting stress. Metabolic control was assessed by the glycosylated hemoglobin (HbA1c) values obtained from the medical records. RESULTS: Fathers of adolescents with T1DM reported significantly more parenting stress than fathers of the comparison group. Parenting stress was associated with depressive symptoms only in adolescents with T1DM. Parenting stress in fathers explained 25% of the variance in depressive symptoms in adolescents with T1DM and 18% of the variance in HbA1c. In mothers, this was 22% and 19%, respectively. CONCLUSION: The combination of blood glucose control and depressive symptoms in adolescents with T1DM was found to be associated with both paternal and maternal parenting stress.

Can one question be a useful indicator of psychosocial problems in adolescents with diabetes mellitus?

AIM: A screening tool for psychosocial functioning of adolescents with diabetes is unavailable. We investigated whether one question using a Visual Analogue Scale that indicates a rating from the worst (0) to the best possible life (10) is related to standardized indices of psychosocial functioning and well-being in adolescents with diabetes mellitus type 1 (T1DM). METHOD: One hundred and fifty-one adolescents with T1DM and 122 healthy peers between 12 and 18 years of age were asked to rate their life on a scale, varying from 0 to 10. Behaviour problems and depressive symptoms were measured with the Youth Self-Report (YSR) and the Children's Depression Inventory (CDI). RESULTS: Adolescents with T1DM rated their life less positive in comparison with their healthy peers (F(1,269) = 14.01, p = 0.000). Adolescents with T1DM who rated their life with a 6 or lower reported more depressive symptoms and behaviour problems (F(2,131) = 24.19, p = 0.00) compared to those with higher scores (7 or up). CONCLUSION: One question the 'rate your life scale' identified most of the adolescents at risk of internalizing behaviour problems, especially depression. The results of this first step in exploring the validity of this question as a screening tool for psychological functioning are promising.