QOL-34. The relationship between psychological flexibility, quality-of-life and psychological health in young people who have experienced a brain tumour [Abstract]

Despite increasing survival rates in young people who have experienced a brain tumour, this patient group have the poorest reported quality-of-life (QoL) of all cancer survivors. QoL is defined as an individual’s perception of their position in life in relation to their goals, expectations and standards. QoL can be influenced by physical functioning but one of its strongest predictors is psychological health. A concept that has a large impact on psychological health is Psychological Flexibility (PF). PF refers to the ability to recognise and adapt to situations, shift cognitive and behavioural repertoires which are impacting negatively on personal and social functioning and commit to behaviours that are in line with strongly held values. Studies have demonstrated a relationship between PF and QoL in other patient populations such as chronic pain and breast cancer survivors. In this study we explored the relationship between PF and QoL at baseline in a sample of young people enrolled in a randomised controlled trial of Acceptance and Commitment Therapy (ACT) for young people who have experienced a brain tumour. We found that higher PF was associated with higher QoL in both 11-15 year olds (R2 = .69, p < .05) and 16 – 24 year olds (R2 = .29, p < .01). We also found higher PF was associated with lower levels of mental health difficulties (R2s ≥ .24, ps < .01) which was also associated with higher levels of QoL (R2 = .49 , p < .01). The results suggest assessing and providing support to increase PF is important for young people who have experienced a brain tumour. It highlights that interventions found to increase PF, such as ACT, could be helpful in improving psychological health in this population

QOL-26. Exploring the experience of young people receiving remotely delivered Acceptance and Commitment Therapy following treatment for a brain tumour

Despite high survival rates of children and young people diagnosed with a brain tumour, survival is often associated with poor psychological, physical, and social outcomes. Acceptance and Commitment Therapy (ACT) is an evidence-based psychological intervention shown to improve psychological and physical outcomes in adults and children with chronic disease, including cancer. The ACT Now study investigates the feasibility of ACT delivered remotely with young people who have experienced a brain tumour. This study aims to describe participant experience whilst better understanding the impact of therapy and capturing the barriers and facilitators to engagement. Participants of the ACT Now study were invited to take part in a semi-structured interview with questions covering experience of study initiation, receipt of ACT, remote delivery and overall impact of ACT. Ten participants who had previously undergone treatment for a brain tumour have been interviewed to date. Interviews were transcribed verbatim and coded into broad themes. We found that pre-therapy mood and altruism served as motivation for interviewees’ involvement in the study. Interviewees reported hoping to learn coping techniques to navigate fluctuating moods and the pressures of young adult life. Despite the technology used for remote delivery occasionally malfunctioning, interviewees reported increased ability to access therapy via this method. However, an overall preference for face-to-face therapy delivery was reported with interviewees describing that they felt communication might have been easier in person. The therapeutic relationship and the therapists’ flexible schedules were seen as facilitators to session attendance. Barriers to attendance were scarcely reported but included scheduling conflicts due to work or school. ACT was highly regarded amongst interviewees and provided an opportunity for them to learn about themselves and how they can live in accordance with their personal values. Interviewees benefitted from ACT psychologically, physically, and socially and reported an overall positive experience of study involvement

Workshop report: Workshop on psychiatric prescribing and psychology testing and intervention in children and adults with Duchenne muscular dystrophy

This workshop aimed at summarising knowledge and key issues in psychiatric prescribing and psychological testing in children and adults with Duchenne muscular dystrophy (DMD). It comprised clinicians and patient representatives from the UK and the Netherlands. The following topics were discussed: a model for capturing the range of non-motor problems in the domains of cognition, learning, emotion and behaviour; psychosocial screening tools for use with children and adults; assessing neurocognitive functioning in children and adults; parent and teacher perspectives on psychosocial needs; and psychopharmacological treatment for affective disorders, anxiety disorders, obsessive compulsive disorder, attention deficit hyperactivity disorder (ADHD) and insomnia. Some key considerations included: the need for tools used to assess behavioural and psychosocial functioning to consider motor aspects in DMD; to understand more about working memory performance; the need for early interventions for automatisation problems, which affect reading and arithmetic; appropriate selection of tests for neuropsychology assessments; in schools, acknowledging the range of psychosocial risks and gathering evidence of psychosocial needs; the suitability of selective serotonin reuptake inhibitors for mood and anxiety disorders; the use of stimulant medications for ADHD; melatonin use for insomnia; the cautious use of benzodiazepines; and the need for improving pathways for psychosocial care

Workshop report: Workshop on psychiatric prescribing and psychology testing and intervention in children and adults with Duchenne muscular dystrophy

This workshop aimed at summarising knowledge and key issues in psychiatric prescribing and psychological testing in children and adults with Duchenne muscular dystrophy (DMD). It comprised clinicians and patient representatives from the UK and the Netherlands. The following topics were discussed: a model for capturing the range of non-motor problems in the domains of cognition, learning, emotion and behaviour; psychosocial screening tools for use with children and adults; assessing neurocognitive functioning in children and adults; parent and teacher perspectives on psychosocial needs; and psychopharmacological treatment for affective disorders, anxiety disorders, obsessive compulsive disorder, attention deficit hyperactivity disorder (ADHD) and insomnia. Some key considerations included: the need for tools used to assess behavioural and psychosocial functioning to consider motor aspects in DMD; to understand more about working memory performance; the need for early interventions for automatisation problems, which affect reading and arithmetic; appropriate selection of tests for neuropsychology assessments; in schools, acknowledging the range of psychosocial risks and gathering evidence of psychosocial needs; the suitability of selective serotonin reuptake inhibitors for mood and anxiety disorders; the use of stimulant medications for ADHD; melatonin use for insomnia; the cautious use of benzodiazepines; and the need for improving pathways for psychosocial care

Characterisation of a large, single-centre cohort of patients with Becker muscular dystrophy to inform standardised care guidelines

\ua9 The Author(s) 2025. Aims: This retrospective, cross-sectional study aimed to characterise a large cohort of paediatric and adult patients with Becker muscular dystrophy (BMD) to inform clinical care. Results: The analysis included data from 163 male patients with genetically confirmed BMD followed up at a highly specialised neuromuscular centre between 1982 and 2023. The mean age at last neuromuscular assessment was 33.2 years (range 1.4–86.3). Large deletions in the DMD gene were the most common variants (78% of cases), followed by large duplications and small variants, each accounting for 11% of cases. BMD diagnosis was prompted by skeletal muscle symptoms in 52.2% of cases, a positive family history in 27.6%, neuropsychiatric issues or diagnoses in 9.7%, incidental findings in 6.7%, and cardiomyopathy in 3.8%. Twenty-three percent of patients were non-ambulant at last evaluation, with a mean age at loss of ambulation (LoA) of 42.2 years (range 11.2–77.6 years). Disease duration correlated with the severity of motor impairment (expressed as fully ambulant, ambulant with limitation, ambulant with aids, non-ambulant) at last assessment. Cardiac involvement was observed in 52.3% of patients. Severe respiratory impairment was rare and more prevalent in non-ambulant patients. Neuropsychiatric issues were common (44.2%), but only 18.4% of patients had a formal diagnosis. Conclusions: Retrospective analyses of clinical case records contribute to improved understanding of the variability of phenotypes of BMD. Combined with data from other large cohorts, these findings can contribute to the development of standard of care guidelines for BMD and inform the design of clinical trials of novel therapies

Bill Geagan Correspondence

Entries include a publisher advertisement, letters from Mrs. Geagan some on Bill\u27s comic nature stationery, a letter from his editor Cass Canfield Jr., and a postcard from the author. Date range: 1952-04/1952-05, 1957-02/1957-0

INTERACTION BETWEEN STRATOSPHERIC MESOSCALE GRAVITY WAVES AND CYCLONIC ACTIVITY ON THE NORTHEASTERN AMERICAN COAST

Stratospheric gravity wave activity has small but distinct impacts on circulation, thermal structure, turbulence, and mixing, rendering them crucial to accurate understanding and modeling of the middle atmosphere. When extreme weather occurs, atmospheric disturbances can interact with the tropopause and lower stratosphere, generating and/or amplifying stratospheric mesoscale gravity wave (MGW) activity. This study aims to identity patterns present in stratospheric MGWs during extreme Nor’easter events, which have been identified to occur in a region that is a hotspot for gravity waves in the stratosphere, but have been minimally studied due to advances in satellite technology only allowing for effective research in the past 20-30 years, and due to gravity waves as a field being relatively niche to begin with. To accomplish the stated objective, nine case studies were selected - three comprised of major Nor’easter storms, three of moderate storms, and three of weak coastal lows. Brightness temperature (BT) perturbations and variances were retrieved from Atmospheric Infrared Sounder (AIRS) observations at the 4.3 !m band, which were then used to extrapolate relative comparisons between wave amplitudes Additionally, brightness temperatures associated with cloud-tops were retrieved from the 8.1 !m band, along with WPC 3-hour surface analysis data, NCEI 5-minute radar data, and SPC 12-hour 250 mb upper air maps. These supplementary data were compared against the 4.3 !m BT perturbations and variances for 12-hour timesteps over the course of 48 hours before and 48 hours after the selected midpoint for each of the nine events. Analysis found that results matched prior studies, and additionally identified several distinct patterns. Cases that met or exceeded the bounds for a strong event (minimum pressure =50 kt) consistently displayed heightened wave activity (above a threshold value of variance ≥ 0.05 K2) in trough or south-of-jet regions identified in previous work as a combination of both jet and convective influences. This was also somewhat present in moderate events, but not consistently in nearly all timesteps as it was in the major Nor’easters. Along with this, results showed that tropopause overshooting, a phenomenon responsible for stratospheric MGW generation and amplification, was frequently present during strong events. When this occurred, the position of wave packets with the highest variance values either mirrored the shape of the radar mosaic where overshooting was present, or did so twelve hours later, shifted further along the storm track, but in the same shape. Finally, results showed that areas of enhanced wave activity were typically bounded by fronts, with this being nearly always the case for strong events, and with a specific tendency for variance values ≥ 0.05 to follow the shape of cold cloud-top temperatures forming the comma cloud around a center low, but only on the northwest side of associated occluded fronts