Mental Health and Quality of Life in CYP with Pancreatitis
Research type
Research Study
Full title
Mental Health and Quality of Life in Children and Young People with Acute Recurrent and Chronic Pancreatitis
IRAS ID
323775
Contact name
Tassos Grammatikopoulos
Contact email
Sponsor organisation
King's College Hospital NHS Trust
Duration of Study in the UK
1 years, 3 months, 1 days
Research summary
Background:
Health-related quality of life (HRQOL) has been studied in adult patients with chronic pancreatitis (e.g. Wright, Lochan & Imrie, 2009; Fitzsimmons et al., 2005), with findings demonstrating impaired HRQOL relative to healthy controls, especially with regard to physical functioning. Fitzsimmons et al. also found increased fatigue, sleep disturbances, and fear of future health problems in patients with pancreatitis.The BSPGHAN Pancreatitis Working Group recognises that HRQOL outcomes in children with pancreatitis are poorly understood, and to date only 2 peer-reviewed studies have evaluated HRQOL in this population (Bellin et al., 2011, Pohl et al., 2012). Bellin and colleagues found lower HRQOL compared with US population healthy controls before total pancreatectomy (TP) with islet auto transplantation (IAT), but significantly improved HRQOL afterwards, which was thought to relate to much improved physical functioning. The second study by Pohl et al. (2012) also found significantly impaired HRQOL and fatigue were reported by children with chronic pancreatitis as well as their parents, across all subscales. This suggests that chronic pancreatitis impacts upon all areas of young people’s lives, with some of the largest effect sizes seen for the Psychosocial Health Summary Score, largely due to greatest differences in school functioning relative to healthy peers. The authors suggested this was not surprising, given that pancreatitis symptoms (eg, chronic pain) would likely also affect a child's school absences and ability to focus on school (the 2 domains captured by the PedsQL School Functioning Scale). The authors recommended further, multi-centre studies to further investigate their findings. Research Aims:
We would like to extend the investigations above using a multi-centre cohort of paediatric patients from the UK. We will also include the investigation of mental health, to indicate prevalence of anxiety and depression in this population as further information regarding burden of disease. Anecdotally, many patients with pancreatitis report dissatisfaction with generic healthcare often reporting that non-specialist services do not understand their condition and its management. We will therefore include a measure of healthcare satisfaction.We will therefore investigate whether the below differ in children and young people with pancreatitis relative to health control standardisation data:
1) General Quality of Life
2) Fatigue
3) Healthcare Satisfaction
4) Mental HealthBenefits to patients:
Data regarding the impact of paediatric chronic pancreatitis is lacking meaning healthcare professionals caring for these patients are not best informed of the needs of this population. The data resulting from this study will be used to better understand the needs of these children and young people and shape the development of services to better meet their needs.
REC name
South West - Cornwall & Plymouth Research Ethics Committee
REC reference
23/SW/0127
Date of REC Opinion
19 Feb 2024
REC opinion
Further Information Favourable Opinion