Measuring self-reported quality of life in 8- to 11-year-old children born with gastroschisis: Is the KIDSCREEN questionnaire acceptable?

BACKGROUND: Children born with gastroschisis have a good prognosis but require surgical correction and long-term follow up. There has been little research on the impact of gastroschisis on the child's health-related quality of life (QoL). The aim was to assess face and content validity of the KIDSCREEN-52 questionnaire as a measurement of self- and proxy-reported QoL in children born with gastroschisis and to evaluate self-reported QoL in these children compared with the reference population. METHODS: In this cross-sectional exploratory study, we used the validated KIDSCREEN-52 questionnaire and individual interview with 8- to 11-year-old children born with gastroschisis who were identified from the Northern Congenital Abnormality Survey. Self-reported QoL scores were compared with age-matched UK norms by using the two-sample t test. RESULTS: Ten children (median age 9.6 years, interquartile range 8.3-11.0) and their parents participated. Children found KIDSCREEN a helpful tool to explore their feelings and that it covered life aspects important to them. Parents believed that all priority areas were represented and that it was straightforward for their children to complete. In nine KIDSCREEN domains, children with gastroschisis had similar QoL scores to those in the reference population, and in one (psychological well-being) the mean score was significantly better (p = 0.03). All children described their health as good/very good or excellent; eight said they would not like to change anything about their body. CONCLUSION: The KIDSCREEN questionnaire has adequate face and content validity as a measure of QoL in children with gastroschisis and is acceptable to both children and parents.

Preventive Digital Mental Health for Children in Primary Schools: Acceptability and Feasibility Study.

BACKGROUND: The incidence of mental health problems in children and adolescents in the United Kingdom has significantly increased in recent years, and more people are in contact with mental health services in Greater Manchester than in other parts of the country. Children and young people spend most of their time at school and with teachers. Therefore, schools and other educational settings may be ideal environments in which to identify those experiencing or those at the risk of developing psychological symptoms and provide timely support for children most at risk of mental health or related problems. OBJECTIVE: This study aims to test the feasibility of embedding a low-cost, scalable, and innovative digital mental health intervention in schools in the Greater Manchester area. METHODS: Two components of a 6-week digital intervention were implemented in a primary school in Greater Manchester: Lexplore, a reading assessment using eye-tracking technology to assess reading ability and detect early atypicality, and Lincus, a digital support and well-being monitoring platform. RESULTS: Of the 115 children approached, 34 (29.6%) consented and took part; of these 34 children, all 34 (100%) completed the baseline Lexplore assessment, and 30 (88%) completed the follow-up. In addition, most children were classified by Lincus as regular (≥1 per week) survey users. Overall, the teaching staff and children found both components of the digital intervention engaging, usable, feasible, and acceptable. Despite the widespread enthusiasm and recognition of the potential added value from staff, we met significant implementation barriers. CONCLUSIONS: This study explored the acceptability and feasibility of a digital mental health intervention for schoolchildren. Further work is needed to evaluate the effectiveness of the digital intervention and to understand whether the assessment of reading atypicality using Lexplore can identify those who require additional help and whether they can also be supported by Lincus. This study provides high-quality pilot data and highlights the potential benefits of implementing digital assessment and mental health support tools in a primary school setting.

Self-reported quality of life of young children with conditions from early infancy: a systematic review.

CONTEXT: There is little consistency in the use of instruments for measuring self-reported quality of life (QoL) in young children. OBJECTIVE: To systematically review studies of self-reported QoL in children aged <12 years with congenital health conditions, and to examine the agreement between self- and proxy-reports. DATA SOURCES: Literature databases (MEDLINE, EMBASE, Web of Science, PsychINFO) were systematically searched, reference lists of eligible studies were scanned. STUDY SELECTION: We included studies published in English between January 1989 and June 2013 which used validated instruments to assess self-reported QoL in children aged <12 years with a distinct congenital health condition identified in early infancy. DATA EXTRACTION: We extracted data on study design, objective, sample characteristics, QoL assessment instrument, statistical techniques and results. RESULTS: From 403 full-text articles assessed for eligibility, 50 studies underwent detailed review, and 37 were included in a narrative synthesis. Children's self-reported QoL was assessed by using a variety of generic and/or condition-specific instruments, with the Pediatric Quality of Life Inventory being the most frequently used (25% [9 studies]). Regardless of the condition or the instrument used, children often reported QoL similar to the reference population, except for lower scores in the physical functioning/health domain. There were differences between younger and older age groups according to QoL domain. The child's perception of QoL differed from that of his or her parents, in particular for subjective domains such as emotional functioning, and these differences were age related. The main limitation of the review resulted from the lack of published studies on self-reported QoL in young children, in particular, lacking both self-reports and proxy reports. Existing studies demonstrated wide variability in the QoL instruments used and approaches to statistical analyses, lack of information about the formation of the study sample (response rate; comparison of responders and nonresponders) and low sample sizes in the age group of interest. CONCLUSIONS: The reviewed studies demonstrated that, even for younger children, both child and parent perspectives are essential to understanding the impact of a condition on a child's QoL.

Melatonin versus placebo in children with autism spectrum conditions and severe sleep problems not amenable to behaviour management strategies: a randomised controlled crossover trial.

Twenty-two children with autism spectrum disorders who had not responded to supported behaviour management strategies for severe dysomnias entered a double blind, randomised, controlled crossover trial involving 3 months of placebo versus 3 months of melatonin to a maximum dose of 10 mg. 17 children completed the study. There were no significant differences between sleep variables at baseline. Melatonin significantly improved sleep latency (by an average of 47 min) and total sleep (by an average of 52 min) compared to placebo, but not number of night wakenings. The side effect profile was low and not significantly different between the two arms.