11. Nursing/Psychosocial/Quality Improvement
293 Understanding young people’s anxiety about transitioning from paediatric to adult services − a service improvement project
295 Cognition in adult patients with cystic ﬁbrosis (CF) with and without cystic ﬁbrosis related diabetes (CFRD)
R.A. Massey-Chase1 , B. O’Dea1 , C.C. Reilly2 , F. Perrin1 , P. Macedo1 , C. Elston1 . 1 King’s College Hospital NHS Foundation Trust, Adult Cystic Fibrosis Service, London, United Kingdom; 2 King’s College Hospital NHS Foundation Trust, Physiotherapy Department, London, United Kingdom
H.K. Chadwick1,2 , A.M. Morton2 , A. Drifﬁll2 , A. Wood2 , L. Gillgrass2 , L. Dye1 , C. Lawton1 , M.W. Mansﬁeld2 , D. Peckham2 . 1 School of Psychology, University of Leeds, Leeds, United Kingdom; 2 Regional Adult Cystic Fibrosis Unit, St James’ Hospital, Leeds, United Kingdom
Objectives: To understand further young people’s anxieties about transitioning from paediatric to adult services to inform service improvement. Methods: 16 patients who transitioned over a 2.5 year period were asked about their experience. Using a numerical rating scale (0−10) they verbally rated how anxious they remembered being, in general and regarding various aspects of the process. The group was divided into those reporting low (<5) versus high (5) general anxiety. The groups were compared (using non-parametric tests) on variables of health status (FEV1 , BMI, IV days − taken from annual review the year of transition) and on their anxiety about different elements of the transition process, in order to better understand the factors contributing to heightened anxiety. Results: The only elements of the transition process rated as more anxiety provoking by the high anxiety group (n = 9) were “differences between paediatric and adult care” (p = 0.008) and “concerns about future health problems” (p = 0.016). There were no signiﬁcant differences for other elements of transition (meeting a new team, potential exposure to infection, inpatient admissions on an adult ward, managing CF independently, further education/employment, leaving home, fertility/relationships) or on any health status variable. Conclusion: Fear of the unknown contributed to heightened anxiety. Therefore, we have focused on updating the information provided about how care is delivered in the adult service and informally introducing members of the adult team earlier. The paediatric and adult teams now also meet twice a year in order to make individualised care plans for those transitioning in the next 6 months.
Objectives: Impaired glucose tolerance (IGT), type 1 (T1DM) and type 2 diabetes mellitus (T2DM) have deleterious effects on cognitive performance. Hence, patients with cystic ﬁbrosis related diabetes (CFRD) are hypothesized to show similar impairment. This study aimed to elucidate the nature and severity of any cognitive impairment in patients with CFRD compared to non-diabetic patients with CF and healthy controls matched as closely as possible for age, gender and education level. Patients with CF were also matched as closely as possible on CFTR genotype. Methods: Adult (>16 years old), pancreatic insufﬁcient patients registered to the Leeds CF Unit who had adequate verbal and written English were eligible. To date, 45 patients with insulin-treated CFRD and 47 non-diabetics who had received a normal oral glucose tolerance test (OGTT) within the past 12 months were included. 10 healthy controls were recruited to date from relatives of patients and the general population. Cognitive performance was assessed using the Cambridge Neuropsychological Test Automated Battery (CANTAB). Results: Preliminary ﬁndings show that matched controls perform better than both groups of patients with CF on tests of visual memory and learning, verbal memory, visual sustained attention and executive function. Patients with CFRD performed worse than controls on tests of mental ﬂexibility and visual sustained attention, which is consistent with the pattern of impairment shown in T1DM, and on verbal memory, which is consistent with the pattern of impairment shown in T2DM. Conclusion: Like T1DM and T2DM, CFRD may have a negative impact on cognitive performance and needs to be explored.
294 Aspiring to independence: The personal experiences of young people with cystic ﬁbrosis, asthma and healthy controls
296 The French clinical trials network: The National Platform for Clinical Research (NPCR) A. Ronayette-Preira1 , M. Creton2 , V. Delaup3 , C. Devautour4 , B. Gauthier5 , J. Pengam6 , C. Pires7 , D. Roche2 , F. Valentin8 , M. Abely5 , R. Chiron4 , V. ColombJung1 , P. De Carli1 , N. Dufeu9 , I. Durieu3 , M. Fayon8 , D. Hubert7 , L. Lemonnier1 , S. Mazur3 , A. Munck10 , T. Perez2 , A. Pr´evotat2 , G. Rault6 , P. Reix3 . 1 Vaincre La Mucoviscidose, Paris, France; 2 Albert Calmette Hospital, Lille, France; 3 Cystic Fibrosis Reference Center, Lyon, France; 4 Arnaud de Villeneuve Hospital, Montpellier, France; 5 American Memorial Hospital, Reims, France; 6 Cystic Fibrosis Reference Center, Roscoff, France; 7 Cochin Hospital, Paris, France; 8 Pellegrin Hospital, Bordeaux, France; 9 Hˆopital Nord, Marseille, France; 10 Robert Debr´e Hospital, Paris, France
D.J. Gladwell1 , J. Owen1 , N. West2 . 1 University of Shefﬁeld, School of Health and Related Research, Shefﬁeld, United Kingdom; 2 Shefﬁeld Children’s Trust, CF Unit, Shefﬁeld, United Kingdom Objectives: To investigate the ﬁrst person lived experience of young people, noting their accounts of how health affects the aspects of life they value. Methods: 23 young people (aged 13−15) were interviewed using a biographical narrative approach starting with the open request, “please tell me the story of your life so far, all the events and experiences that were important for you, personally”. Young people with cystic ﬁbrosis (CF), asthma and normal health were interviewed. Each subjects’ interview transcript was analysed independently in order to develop a theory of the individual and their narrative. The ﬁndings from each individual were then compared with particular attention given to contrasting themes between the health groups. Results: Young people frequently recalled stories of events and experiences involving enjoyable times with friends and families. Many individuals explicitly and implicitly emphasised a desire to grow in independence. However, it was notable that this journey to independence was substantially more complex for young people with CF than it was for other health groups. The intensive treatment requirements and a sense that at any time health may deteriorate resulting in hospitalisation were given as reasons for making choices to ensure they remained near support and protection. Conclusion: Independence was a common aspiration across all groups interviewed. However the extent to which independence was enjoyed varied depending on the health status of the young person. More detailed research is required to explore the barriers to independence faced by young people with CF.
Background: In 2008, ECFS-CTN selected 6 multisite centres out of the 7 French inter-regions. Objectives: The French CF Society (SFM) and the patients’ association setup (2009) a NPRC in order to optimize the contribution to Clinical Research (CR) of the 45 CF centres following 6200 patients recorded in the French CF Registry. Methods: Establishment of i. a Steerco including the principal investigator and a clinical research coordinator (CRC) of each inter-region, SFM and patients’ association representatives; ii. a website, http://www.recherchecliniquemuco.fr/; iii. the CRC in each inter-region has the following main tasks: – collect/enter data related to patients’ inclusions into a software – run CR protocols within the multisite centres – assist the development of clinical studies – prepare investiqator’s responses to CTN requests Results: Advices by the Steerco for the setup of CR projects. The Webcast CR data show 31 industrial and 75 academic projects either carried out or in progress since 2010. Intervention of Steerco to setup a Vertex LEAD action for LCI training in France. Regular improvement in ECFS assessments of French multisite CTN centres. Conclusion: The NPCR may help meet ECFS-CTN multisite centres challenges by: – giving an overview of CR projects – implementing tools for patient’s screening and inclusion – sharing effective experiences of multisite centres – reinforcing the link between centres by greater involvement into a project regarding a priority topic (e.g. antibiotic treatment/LCI/physical activity) – identifying projects that have resulted in a publication and sometimes in a change in care practices – coordinating the ECFS eQUIP project deployment.