Chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is a disabling condition known to have a negative impact on all aspects of a child’s life. However, little is understood about the impact of CFS/ME on siblings. A total of 34 siblings completed questionnaires measuring depression (Hospital Anxiety and Depression Scale (HADS)), anxiety (HADS and Spence Children’s Anxiety Scale (SCAS)) and European Quality-of-life-Youth (EQ-5D-Y). These scores were compared with scores from normative samples. Siblings had higher levels of anxiety on the SCAS than adolescents of the same age recruited from a normative sample; however, depression and quality-of-life were similar. Interviews were undertaken with nine siblings of children with CFS/ME who returned questionnaires. Interview data were analysed using a framework approach to thematic analysis. Siblings identified restrictions on family life, ‘not knowing’ and lack of communication as negative impacts on their family, and change of role/focus, emotional reactions and social stigma as negative impacts on themselves. They also described positive communication, social support and extra activities as protective factors. Paediatric services should be aware of the impact of CFS/ME on the siblings of children with CFS/ME, understand the importance of assessing paediatric CFS/ME patients within the context of their family and consider providing information for siblings about CFS/ME.

BackgroundPaediatric chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME) is relatively common and disabling. Research is hampered because current patient-reported outcome measures (PROMs) do not capture outcomes that are important to children with CFS/ME.AimThe aim of this study was to explore the aspects of life and health outcomes that matter to children with CFS/ME.MethodsTwenty-five children with CFS/ME were interviewed (11 males, 14 females; mean age 12.9 years (SD 2.2), range 8–17). Twelve were trial participants interviewed during the trial and 13 were recruited as part of a follow-up qualitative study. Parents were present in 19 interviews with their children. Three mothers participated in a focus group. All the interviews and the focus group were audio-recorded and transcribed. Data were analysed thematically using techniques of constant comparison. NVivo was used to structure and categorise data in a systematic way.ResultsChildren identified four key themes (health outcome domains): ‘symptoms’ that fluctuated, which caused an unpredictable reduction in both ‘physical activity’ and ‘social participation’ all of which impacted on ‘emotional well-being’. These domains were influenced by both ‘management’ and ‘contextual factors’, which could be positive and negative. The relationship between healthcare and school was considered pivotal.ConclusionsChildren's descriptions helped to inform a conceptual model that is necessary to develop a new paediatric CFS/ME PROM. Doctors need to be aware of how children conceptualise CFS/ME; the relationship between healthcare and school is fundamental to ameliorate the impact of CFS/ME.Trial registration numberISRCTN81456207.

ObjectiveTo implement parent-oriented discharge planning (Train-to-Home) for preterm infants in neonatal care.DesignBefore and after study, investigating the effects of the intervention during two 11-month periods before and after implementation.SettingFour local neonatal units (LNUs) in South West England.ParticipantsInfants without major anomalies born at 27–33 weeks’ gestation admitted to participating units, and their parents.Train-to-Home interventionA family-centred discharge package to increase parents’ involvement and understanding of their baby's needs, comprising a train graphic and supporting care pathways to facilitate parents’ understanding of their baby's progress and physiological maturation, combined with improved estimation of the likely discharge date.Main outcome measuresPerceived Maternal Parenting Self-Efficacy (PMP S-E) scores, infant length of stay (LOS) and healthcare utilisation for 8 weeks following discharge.ResultsParents reported that the Train-to-Home improved understanding of their baby's progress and their preparedness for discharge. Despite a lack of change in PMP S-E scores with the intervention, the number of post-discharge visits to emergency departments (EDs) fell from 31 to 20 (p<0.05), with a significant reduction in associated healthcare costs (£3400 to £2200; p<0.05) after discharge. In both study phases, over 50% of infants went home more than 3 weeks before their estimated date of delivery (EDD), though no reduction in LOS occurred.ConclusionsDespite the lack of measurable effect on the parental self-efficacy scores, the reduction in ED attendances and associated costs supports the potential value of this approach.

ObjectiveInvestigate the effectiveness and cost-effectiveness of the Lightning Process (LP) in addition to specialist medical care (SMC) compared with SMC alone, for children with chronic fatigue syndrome (CFS)/myalgic encephalitis (ME).DesignPragmatic randomised controlled open trial. Participants were randomly assigned to SMC or SMC+LP. Randomisation was minimised by age and gender.SettingSpecialist paediatric CFS/ME service.Patients12–18 year olds with mild/moderate CFS/ME.Main outcome measuresThe primary outcome was the the 36-Item Short-Form Health Survey Physical Function Subscale (SF-36-PFS) at 6 months. Secondary outcomes included pain, anxiety, depression, school attendance and cost-effectiveness from a health service perspective at 3, 6 and 12 months.ResultsWe recruited 100 participants, of whom 51 were randomised to SMC+LP. Data from 81 participants were analysed at 6 months. Physical function (SF-36-PFS) was better in those allocated SMC+LP (adjusted difference in means 12.5(95% CI 4.5 to 20.5), p=0.003) and this improved further at 12 months (15.1 (5.8 to 24.4), p=0.002). At 6 months, fatigue and anxiety were reduced, and at 12 months, fatigue, anxiety, depression and school attendance had improved in the SMC+LP arm. Results were similar following multiple imputation. SMC+LP was probably more cost-effective in the multiple imputation dataset (difference in means in net monetary benefit at 12 months £1474(95% CI £111 to £2836), p=0.034) but not for complete cases.ConclusionThe LP is effective and is probably cost-effective when provided in addition to SMC for mild/moderately affected adolescents with CFS/ME.Trial registration number ISRCTN81456207.

IntroductionThe clinical effectiveness of a ‘rule-out’ acute coronary syndrome (ACS) strategy for emergency department patients with chest pain, incorporating a single undetectable high-sensitivity cardiac troponin (hs-cTn) taken at presentation, together with a non-ischaemic ECG, remains unknown.MethodsA randomised controlled trial, across eight hospitals in the UK, aimed to establish the clinical effectiveness of an undetectable hs-cTn and ECG (limit of detection and ECG discharge (LoDED)) discharge strategy. Eligible adult patients presented with chest pain; the treating clinician intended to perform investigations to rule out an ACS; the initial ECG was non-ischaemic; and peak symptoms occurred <6 hours previously. Participants were randomised 1:1 to either the LoDED strategy or the usual rule-out strategy. The primary outcome was discharge from the hospital within 4 hours of arrival, without a major adverse cardiac event (MACE) within 30 days.ResultsBetween June 2018 and March 2019, 632 patients were randomised; 3 were later withdrawn. Of 629 patients (age 53.8 (SD 16.1) years, 41% women), 7% had a MACE within 30 days. For the LoDED strategy, 141 of 309 (46%) patients were discharged within 4 hours, without MACE within 30 days, and for usual care, 114 of 311 (37%); pooled adjusted OR 1.58 (95% CI 0.84 to 2.98). No patient with an initial undetectable hs-cTn had a MACE within 30 days.ConclusionThe LoDED strategy facilitates safe early discharge in >40% of patients with chest pain. Clinical effectiveness is variable when compared with existing rule-out strategies and influenced by wider system factors.Trial registration numberISRCTN86184521.