An exploration of psychosocial related quality of life in Cystic Fibrosis (CF), and the impact of mental health outcomes at Ulster University

Dr Rachel McHugh Monday, February 03, 2025 Competition Funded PhD Project (Students Worldwide)

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Coleraine United Kingdom Clinical Psychology Developmental Psychology Health Psychology Occupational Psychology

About the Project

There is a research gap in understanding the mental health of individuals with the long term health condition Cystic Fibrosis (CF). Research has indicated that mental health concerns like depression and anxiety are common among people with CF (PWCF), emerging in childhood, and if untreated can have a negative impact on both physical and mental outcomes including lung function, pulmonary exacerbations, BMI and health related quality of life (Bathgate, Hjelm, Filigno, Smith & Georgiopoulous, 2022). Symptoms of depression such as loss of appetite, fatigue, and insomnia, can overlap with CF related symptoms, ensuing further negative health implications. In CF, the prevalence of depression ranges from 29% among children and adolescents, 33% among adults, anxiety in adults has ranged from 30% to 33% (Smith, Modi, Quittner & Wood, 2010; Latchford & Duff, 2013). Research has indicated that care pathways and provision of high-quality care for depression/anxiety should be in place prior to implementation of a screening programme (Quittner et al., 2016). However, psychoeducation resources remain lacking.

This project aims to further mental health research in CF with the following programme of planned research:

1. Umbrella review – a full systematic literature review and an up-to-date synthesis of mental health in CF research.

2. The psychometrics of CF specific measures – by consulting the systematic review to make research informed decisions, the development develop an updated online survey, building on the work of research to date (e.g., McHugh et al., 2023). The project will deliver a survey to explore mental health outcomes and to continue to validate CF specific measures to better understand the mental health experience in PWCF.

3. Scoping for the development of an online intervention/psychoeducation toolkit and mental health literacy in the CF community – a two-phase qualitative investigation to assess the level of need in collaboration with clinicians and PWCF.

Please note Applicants with a 2:1 degree in Psychology (or close to completion) are strongly encouraged to apply.

References

Abbott, J., Morton, A., Hart, A., Conway, S. P., & Webb, A. K. (2007). 313 Can patient-reported health-related quality of life predict survival in cystic fibrosis?. Journal of Cystic Fibrosis, 6, 77.
Bach, M., Jordan, S., Hartung, S., Santos-Hövener, C., & Wright, M. T. (2017). Participatory epidemiology: the contribution of participatory research to epidemiology. Emerging Themes in Epidemiology, 14(1), 1-15.
Bathgate, C. J., Hjelm, M., Filigno, S. S., Smith, B. A., & Georgiopoulos, A. M. (2022). Management of Mental Health in Cystic Fibrosis. Clinics in Chest Medicine, 43(4), 791-810.
Birnie, K. A., Noel, M., Chambers, C. T., Uman, L. S., & Parker, J. A. (2018). Psychological interventions for needle‐related procedural pain and distress in children and adolescents. Cochrane Database of Systematic Reviews, (10).
Cronly, J., Duff, A., Riekert, K., Horgan, A., Lehane, E., Perry, I., ... & Savage, E. (2019). Positive mental health and wellbeing in adults with cystic fibrosis: A cross sectional study. Journal of Psychosomatic Research, 116, 125-130.
Latchford, G., & Duff, A. J. (2013). Screening for depression in a single CF centre. Journal of Cystic Fibrosis, 12(6), 794-796.
Melhuish, L. S. (2012). Eating attitudes and behaviours in males and females with cystic fibrosis: the role of body image and coping styles (Doctoral dissertation, University of Southampton).
McHugh, R., Vaughan, R. S., Duarte, C., McDevitt-Petrovic, O., & Kirby, K. (2023). Psychometric properties of the cystic fibrosis eating attitudes and behaviours scale (CFEAB) in an adult population. Journal of Psychosomatic Research, 111123.
Mc Hugh, R., Mc Feeters, D., Boyda, D., & O’Neill, S. (2016). Coping styles in adults with cystic fibrosis: implications for emotional and social quality of life. Psychology, Health & Medicine, 21(1), 102-112.
Polenakovik, H. M., & Sanville, B. (2013). The use of ivacaftor in an adult with severe lung disease due to cystic fibrosis (ΔF508/G551D). Journal of Cystic Fibrosis, 12(5), 530-531.
Smith, B. A., Modi, A. C., Quittner, A. L., & Wood, B. L. (2010). Depressive symptoms in children with cystic fibrosis and parents and its effects on adherence to airway clearance. Pediatric Pulmonology, 45(8), 756-763.
Quick, V., & Chang, G. (2021). Health care provider’s experiences, practices, and recommendations for interventions and screening of cystic fibrosis patients with disordered eating: A qualitative analysis. Chronic Illness, 17(4), 377-390.
Quittner, A. L., Goldbeck, L., Abbott, J., Duff, A., Lambrecht, P., Solé, A., ... & Barker, D. (2014). Prevalence of depression and anxiety in patients with cystic fibrosis and parent caregivers: results of The International Depression Epidemiological Study across nine countries. Thorax, 69(12), 1090-1097.
Quittner, A. L., Abbott, J., Georgiopoulos, A. M., Goldbeck, L., Smith, B., Hempstead, S. E., & Elborn, S. (2016). International committee on mental health in cystic fibrosis: cystic fibrosis foundation and European cystic fibrosis society consensus statements for screening and treating depression and anxiety. Thorax, 71(1), 26-34.
Uman, L. S., Chambers, C. T., McGrath, P. J., & Kisely, S. R. (2006). Psychological interventions for needle‐related procedural pain and distress in children and adolescents. Cochrane database of systematic reviews, (4).