U. Smrekar

Guiding principles on how to manage relevant psychological aspects within a CF team: Interdisciplinary approaches

Managing CF can be emotionally and physically challenging for patients and their relatives. The disease and its treatment influence the ability to tackle normal tasks of daily living and unexpected life events. The context within which psychologists work varies according to different cultural backgrounds and their professional and theoretical memberships. The benchmarks presented here focus on four crucial issues: (i) identifying a common base of tools and theoretical reflections through suggested readings, (ii) interdisciplinary work within a CF team and its importance for both persons with CF and other healthcare professionals, (iii) the benefits of an eclectic approach utilising cognitive-behavioural theories for specific psychological problems and, (iv) effective and evaluated transition programmes from paediatric to adult healthcare services.

Psychological resilience and intolerance of uncertainty in coping with cystic fibrosis.

BACKGROUND Anxiety and depression are lower than to be expected in a considerable portion of cystic fibrosis (CF) patients. This outcome might be a result of substantial resilience and/or tolerance of uncertainty in coping with adversity. Research into resilience in cystic fibrosis is in its infancy. METHODS 57 adult CF patients participated in the study during their routine medical checkup. In addition to regular psychological assessment, the Intolerance of Uncertainty Scale (IUS) and the Resilience Scale (RS) were administered. The relative importance of IUS and RS in predicting quality of life in CF was explored. Bivariate correlations and predictive value of variables in multiple regressions on subscales of the Cystic Fibrosis Questionnaire-Revised (CFQ-R) were calculated. RESULTS Remarkably, resilience (personal competence and acceptance) was clearly elevated, whereas intolerance of uncertainty was comparable to healthy reference groups. In multiple regressions, personal competence emerged as strongest resilience variable in the prediction of quality of life. CONCLUSIONS CF patients in our study seem to be particularly resilient rather than cognitively avoidant. At this stage of research, fostering personal competence in CF patients is most promising in improving quality of life.

Mental Health screening in cystic fibrosis centres across Europe

OBJECTIVES The Cystic Fibrosis (CF) International Mental Health Guidelines Committee published consensus statements for screening and treating depression and anxiety in individuals with CF and their caregivers. This work aimed to evaluate the dissemination and implementation of the guidelines in Europe two years following their publication. METHODS A 28-item survey was developed by the multidisciplinary ECFS Mental Health Working Group and emailed to approximately 300 CF centres across Europe. The survey evaluated (a) who should be responsible for mental health (MH) care, (b) the current awareness and agreement of the guidelines, (c) the provision of recommended MH screening and follow-up care, and (d) successes, barriers and required resources/training needs. RESULTS Responses were received from 187 centres (28 countries represented). There was consensus that a psychologist should be responsible for MH care, although members of the multidisciplinary team (MDT) believed they should also share this responsibility. Sixty-two percent of respondents were aware of the guidelines; 82% percent fully, and 12% partially, agreed with them. Fifty percent (94 centres) had implemented screening. In the past year approximately 6000 patients and 2000 caregivers had been screened, with 80% of respondents using the recommended screening tools. Respondents reported 551 referrals for moderate/severe psychopathology and 84 urgent suicide ideation referrals. CONCLUSIONS The challenges of different healthcare systems and language barriers are being overcome with a greater awareness of the importance of mental health among the MDT. MH screening is feasible and gaining momentum in both Western and Eastern Europe.

WS09.4 The role of resilience in quality of life of adult patients with cystic fibrosis (CF)

Objectives Although several psychological studies on coping and quality of life suggested high levels of resilience in CF patients, empirical data on resilience in CF are barely existent. Thus, the purpose of the study was to investigate resilience in adult CF patients and its impact on quality of life. Methods 57 adult CF patients (18–59 years) participated in the study at their routine medical check-up. In addition to their regular psychological assessment including the Cystic Fibrosis Questionnaire – Revised (CFQ-R), the Resilience Scale (RS) was administered. The constructs were also correlated with physical parameters (age, gender and lung function). Results Patients reported high levels of resilience and overall good quality of life in all domains. Patients resilience was significantly higher compared to the large healthy reference group (t[2086] = 4.7510, p=0.0001) and was independent of gender (t[55] = 0.826, p=0.412), age (r = 0.076, p=0.573) and lung function (FEV1%, r=0.165, p=0.220). Significant associations between resilience and CFQ-R domains could be confirmed. Conclusion Our study is one of the first attempts to explicitely test resilience in CF patients and could demonstrate high levels of resilience in these patient group and positive correlations with quality of life. These results suggest that resilience could be seen as an important factor on quality of life and coping with CF. Therefore fostering resilience early in patients life should be encouraged.

The impact of psychosocial and socioeconomic factors on health status in children with cystic fibrosis

Aim: The study objective was the investigation of psychosocial variables affecting the disease trajectory in patient diagnosed with cystic fibrosis (CF). In addition, we analysed the impact of socioeconomic status on patients’ health status. Method: Between 2000 and 2009 all patients treated at the CF Centre at Innsbruck Medical University and aged below 18 (n = 103) were included in the study and assessed longitudinally. As measures of physical health status we recorded lung function values and body mass index (BMI). Psychosocial status was assessed using the Cystic Fibroses Problemchecklists (CFPC) and Hospital Anxiety and Depression Scale (HADS). Lung function and BMI were recorded quarterly. Psychosocial and sociodemographic variables were collected annually at routine examinations. Results: Our results suggest a strong association between mother’s marital status and lung function (mean FEV1: single parent 82.1% vs. parent with spouse 96.2%). In addition, we found an impact of mother’s educational status on lung function (mean FEV1: compulsory school 79.6% vs. university degree 98.6%). We did not find any significant association with BMI and psychosocial variables. Conlusion: A strong impact of education and marital status on the child’s health status was found, although in Austria treatment costs are fully covered by general health insurance and all patients receive the same treatment. We conclude that it is essential to turn attention to the parent’s marital and educational status. To be able to prevent a negative impact, further research is necessary to investigate how these factors affect lung function.