Economic impact of feeding a phenylalanine-restricted diet to adults with previously untreated phenylketonuria.
A low-phenylalanine diet saves the NHS about £20,000 per untreated adult with PKU in year one by cutting problem behaviors and nursing time.
01Research in Context
What this study did
The team looked at adults with PKU who had never tried the special low-protein diet.
They added up NHS bills for one year before and after the diet began.
Costs counted nursing hours, doctor visits, and drugs.
What they found
The diet saved about £20,000 per adult in the first year.
Most savings came from fewer staff needed to manage problem behaviors.
Less agitation meant shorter shifts and calmer wards.
How this fits with other research
Raslear et al. (1992) and Bailey et al. (2000) already showed the same diet can cut hitting and screaming in single cases.
Hatton et al. (1999) now proves those calm days also save real money.
Guest et al. (2013) widened the lens: their 36-year model says most UK adults with PKU still skip the diet, so the £20k saving is rarely captured.
Together the papers tell one story: the diet works, pays for itself, yet stays on the shelf.
Why it matters
If you support adults with PKU and ID, show funders this £20k figure.
Use it to argue for diet starts, better food budgets, and staff training.
A single year can recoup costs, so waiting "until behavior worsens" loses money every month.
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02At a glance
03Original abstract
The aim of the present study was to estimate the direct healthcare cost of managing adults with previously untreated phenylketonuria (PKU) for one year before any dietary restrictions and for the first year after a phenylalanine- (PHE-) restricted diet was introduced. The resource use and corresponding costs were estimated from medical records and interviews with health care professionals experienced in caring for adults with previously untreated PKU. The mean annual cost of caring for a client being fed an unrestricted diet was estimated to be 83 996 pound silver. In the first year after introducing a PHE-restricted diet, the mean annual cost was reduced by 20 647 pound silver to 63 348 pound silver as a result of a reduction in nursing time, hospitalizations, outpatient clinic visits and medications. However, the economic benefit of the diet depended on whether the clients were previously high or low users of nursing care. Nursing time was the key cost-driver, accounting for 79% of the cost of managing high users and 31% of the management cost for low users. In contrast, the acquisition cost of a PHE-restricted diet accounted for up to 6% of the cost for managing high users and 15% of the management cost for low users. Sensitivity analyses showed that introducing a PHE-restricted diet reduces the annual cost of care, provided that annual nursing time was reduced by more than 8% or more than 5% of clients respond to the diet. The clients showed fewer negative behaviours when being fed a PHE-restricted diet, which may account for the observed reduction in nursing time needed to care for these clients. In conclusion, feeding a PHE-restricted diet to adults with previously untreated PKU leads to economic benefits to the UK's National Health Service and society in general.
Journal of intellectual disability research : JIDR, 1999 · doi:10.1046/j.1365-2788.1999.43120176.x