Acceptance and commitment therapy for young brain tumour survivors: study protocol for an acceptability and feasibility trial.

INTRODUCTION: Survivors of childhood brain tumours have the poorest health-related quality of life of all cancer survivors due to the multiple physical and psychological sequelae of brain tumours and their treatment. Remotely delivered acceptance and commitment therapy (ACT) may be a suitable and accessible psychological intervention to support young people who have survived brain tumours. This study aims to assess the feasibility and acceptability of remotely delivered ACT to improve quality of life among these young survivors. METHODS AND ANALYSIS: This study is a two-arm, parallel group, randomised controlled trial comparing ACT with waitlist control at 12-week follow-up as the primary endpoint. Seventy-two participants will be recruited, who are aged 11-24 and have completed brain tumour treatment. Participants will be randomised to receive 12 weeks of ACT either immediately or after a 12-week wait. The DNA-v model of ACT will be employed, which is a developmentally appropriate model for young people. Feasibility will be assessed using the proportion of those showing interest who consent to the trial and complete the intervention. Acceptability will be assessed using participant evaluations of the intervention, alongside qualitative interviews and treatment diaries analysed thematically. A range of clinical outcome measures will also assess physical and mental health, everyday functioning, quality of life and service usage at 12-week follow-up. The durability of treatment effects will be assessed by further follow-up assessments at 24 weeks, 36 weeks and 48 weeks. ETHICS AND DISSEMINATION: Ethical approval was given by East Midlands, Nottingham 1 Research Ethics Committee (Reference: 20/EM/0237). Study results will be disseminated in peer-reviewed journals, through public events and relevant third sector organisations. TRIAL REGISTRATION: ISRCTN10903290; NCT04722237.

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.