Transition and transfer of young people with cystic fibrosis to adult care.

Treatment for cystic fibrosis (CF) remains arduous and time-consuming, with young people in particular struggling to balance these demands with living a 'normal' life. Transferring to adult services is an important milestone that should be preceded by a gradual process of empowerment. This service evaluation aimed to explore the views of young people with CF before their transfer to adult care and to co-produce revisions to the transition and transfer programme. A total of 37 participants, aged 11-17 years, completed questionnaires during routine clinic visits with 81% expressing good knowledge of CF and treatment, and 59% reporting that they undertook their own treatment. Only 40% had seen a doctor alone for part of their clinic visit, 64% supported recruitment of a youth worker and 48% viewed dedicated adolescent clinics as beneficial. Participants expressed overall satisfaction with their care, however, improvements were suggested. Based on these suggestions, funding was secured for a youth worker, 'transition' clinics were established with children's and adult CF team members, and doctors started seeing young people on their own for part of the clinic visit from age 13 years.

Neuropsychological outcomes following paediatric temporal lobe surgery for epilepsies: Evidence from a systematic review.

OBJECTIVE: The systematic review aimed to assess the neuropsychological outcomes of temporal lobe resections for epilepsy in children. Additional objectives included determining whether earlier age at surgery leads to better neuropsychological outcomes; the relationships between and predictors of these outcomes. METHODS: Using advanced search terms, a systematic review of electronic databases was conducted, comprising MEDLINE, Embase, PsycINFO, Global Health, Web of Science and CINAHL. Included studies reported on outcome following neurosurgical treatment for epilepsy. Specifically, studies were included if they reported neuropsychological outcomes and were concerned only with temporal lobe resection. RESULTS: 73 studies met inclusion criteria. For reported neuropsychological outcomes, the majority of participants remained stable after surgery; some declined and some improved. There was some evidence for increased material-specific memory deficits after temporal lobe surgery based on resection side, and more positive cognitive outcome for those with lower pre-surgical ability level. SIGNIFICANCE: Retrieved evidence highlights the need for improvements to quality of methodology and reporting. Appropriately designed prospective multicentre trials should be conducted with adequate follow-up for long-term outcomes to be measured. Core outcome measures should be agreed between centres. This would permit higher quality evidence so that clinicians, young people and their families may make better informed decisions about whether or not to proceed with surgery and likely post-operative profile.

Adherence to infection prevention and control guidelines: A vignette-based study of decision-making and risk-taking in young adults with cystic fibrosis.

BACKGROUND: Balancing cystic fibrosis (CF) care with demands of normal life is associated with decreased adherence to infection prevention and control (IPC) guidelines. METHODS: Adults with CF, aged 18-25years, were invited to participate via UK CF Trust social media platforms. An online survey evaluated participants' decision-making in nine clinician-rated vignettes and assessed the perceived influence of infection-related information sources. RESULTS: Participants (n=87, mean 21.4years [SD=2.45]; 75% female) were less likely to engage in the high-risk scenarios, although demonstrated greater awareness of cross-infection than environmental risks. Associations between risk-perception and willingness to participate in five vignette-based hypothetical activities were significant (p<0.05). Thematic analysis emphasised influences of past experience and a need to achieve good quality of life. Knowledge gaps were evident. CONCLUSIONS: People with CF make decisions that discriminate between risk-levels but are not always based on robust knowledge. They also show some inclination towards engaging in risky behaviours.