8136 Exploring the prevalence of food insecurity in, and the lived experiences of, people with galactosaemia and their caregivers

Abstract
Why did you do this work? Galactosaemia is a rare inherited metabolic disorder affecting 12 to 18 children born in the UK each year.1Whilst the international standard of care is lifelong dietary restriction of galactose, inconsistent food access can challenge adherence to treatment, and during childhood, could lead to irreversible neuropsychiatric consequences like intellectual disability. Considering the recent COVID-19 pandemic and UK cost-of-living crisis; food insecurity, defined as the ‘financial inability to reliably acquire food to meet nutritional needs’, emerges as a pertinent issue. Thus, we examined how food insecurity may affect this diet-treated illness.

What did you do? This quantitative cross-sectional research study aimed to assess the food security status of people with Galactosaemia and their carers, alongside physical and mental health complications. Patient and Public Involvement and Engagement work co-designed the online survey, through one-to-one semi-structured interviews and group discussions. Three validated questionnaires: USDA Adult Food Security Module (USDA-AFSM), PHQ-9, GAD-7; assessed food security status, depressive and anxiety symptoms, respectively. PHQ-9 and GAD-7 scores of ≥10 were deemed clinically significant. The anonymous online survey ran during July-August 2024, recruiting from a mailing list including 210 families with galactosaemia in Metabolic Support UK and the Galactosaemia Support Group. Analysis used descriptive statistics for closed response and scale questions; and thematic analysis for qualitative questions. The School of Health and Life Sciences Allied Health Professionals and Public Health Ethics Committee at Teesside University granted ethics approval (Ref: 2024-Jun-22488 Giles).

What did you find? Of 51 responses received (n=51), the majority were female, White, caregivers, living in England. Carers were mainly responsible for buying food and most cared for someone aged 0y-19y. Respondents with galactosaemia (n=12), were adults (median age = 43.5y), and mostly males (n=7).

The sample’s food insecurity prevalence was 6.4%; however, carer’s incomes were not reported. Qualitative analysis indicated carers felt ‘fortunate’ to afford safe food. 26% of respondents experienced decreased food security during COVID-19; and 13.7% during the cost-of-living crisis. 53.8% caregivers at least sometimes faced difficulty identifying safe foods. Most respondents would feel safer if galactose was labelled on food products and on restaurant menus.

36.8% of carers reported a previous mental health diagnosis, whilst PHQ-9 and GAD-7 detected 17.6% and 18.9% had clinically significant depression and anxiety, respectively. 16.7% patients had a mental health diagnosis, while 27.3% had clinically significant depression or anxiety scores. PHQ-9 and GAD-7 scores were twice as high in the food insecure cohort.

What does it mean? Food insecurity detected was lower than the UK household’s prevalence (13.6%),2 likely due to sampling bias and lack of diversity in this study, with failure to engage with ethnic minorities and traveller individuals. Future studies should aim to engage with underserved groups. People with galactosaemia had higher rates of current, clinically significant, mental health symptoms than existing psychiatric diagnoses, suggesting potential unmet mental health needs. Navigating the food retail landscape in this diet-treated illness remains an avenue for further exploration.