IMD WATCH
LOW-PROTEIN FOODS: COSTEFFECTIVE PRESCRIBING Inherited metabolic disorders (IMD) of amino acid metabolism require life-long management with a low-protein diet.1 Prescribing of low-protein foods for dietary management of IMD is essential. This article reports on the issues surrounding cost-effective prescribing in England. Catherine Kidd Dietitian, Great Ormond Street Hospital for Children, NHS Trust, London Catherine is a Paediatric Dietitian, with acute clinical experience in a range of specialities including cardiology, oncology/ haematology, paediatric intensive care and metabolics.
REFERENCES Please visit the Subscriber zone at NHDmag.com
Catherine would like to acknowledge the metabolic dietitians team at Great Ormond Street Hospital for their contribution and review of this article.
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IMD of amino acid metabolism include phenylketonuria (PKU), maple syrup urine disease, tyrosinaemia and homocystinuria. Together, natural protein restriction, L-amino acid supplementation and low-protein prescribed foods form the dietary management. Patients require an ongoing supply of low-protein foods to be prescribed by their GP. For patients with PKU, these foods can provide up to 50% of daily energy intake, add bulk to the diet and help with adherence by providing choice in a very limited diet.2 If these products are not prescribed, or provided in adequate amounts, then biochemical control and metabolic stability can be compromised, due to energy deficit and resultant catabolism. Good dietary management and biochemical control are essential to achieve normal growth and optimal neurological outcome in these IMD. THE SCOPE OF THE ISSUE IN ENGLAND
In England, it is estimated that around 10,000 patients attend metabolic clinics. Unfortunately, data is not currently available on the number of patients requiring a low-protein diet with prescribed low-protein foods.3 PKU is the most common diagnosis requiring a low-protein diet, with an estimated 2500 patients with PKU ‘on diet’ in the UK, with a further 60 to 70 new diagnoses per year.3 At our centre, around 220 patients (of which 180 have PKU), aged 0-18 years are on low-protein diets with prescribed low-protein foods. The overall cost of low-protein diets (low-protein food and L-amino acid supplement) to the NHS is estimated
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to be in the region of £12,000 to £18,000 per PKU patient per year, with costs varying according to patient age.1 Approximately 20% of this cost is attributed to food.1 Therefore, at our centre, low-protein food prescriptions for PKU patients alone may cost in the region of £480,000 to £720,000. Clearly, appropriate prescribing of low-protein food is essential in an increasingly financially pressured NHS. THE ROLE OF THE LONDON PROCUREMENT PARTNERSHIP (LPP) IN APPROPRIATE PRESCRIBING
The LPP is a membership organisation founded and funded by London NHS trusts, which supports the NHS to make the most of its purchasing power, so that it can maximise investment in patient care.4 The LPP has produced guidelines on appropriate prescribing of IMD, which clearly state that prescribed low-protein products are essential for the management of IMD patients, and interruptions to their prescription should be avoided, otherwise metabolic control may be lost.4 The LPP states that metabolic dietitians should monitor product usage and prescriptions. However, the LPP also states that metabolic products (including low-protein foods) should not be confused with areas suitable for prescribing review, and should be classified as ‘essential’ rather than ‘staple’ or ‘luxury’. THE ROLE OF THE ADVISORY COMMITTEE ON BORDERLINE SUBSTANCES (ACBS)
The ACBS is responsible for advising on the prescribing of nutritional and dermatological products for use in NHS
IMD WATCH Table 1: Recommended maximum number of units of low-protein foods to be prescribed for a patient with PKU dependent upon age2 Patient age 4 months to 3 years 4-6 years 7-10 years 11-18 years Adults Pre-pregnancy/pregnancy
Number of low-protein food units to prescribe/month 15 25 30 50 50 50
Table 2: The average price range and percentage of foods with prices available in the BNF, for 17 different lowprotein prescribed food groups Product type
Unit size
Bread loaves (n=6) Bread rolls (n=5) Pizza base (n=3) Pasta (n=28) Rice/couscous (n=5) Ready meals (n=12) Cereals (n=4) Flour mixes (n=6) Savoury mixes* (n=6) Savoury snacks (n=7) Egg replacer (n=4) Milk replacer (n=7) Dessert (n=15) Cake mixes (n=8) Biscuits (n=15) Breakfast bar (n=5) Soup sachets (n=4) Total n = 144
100g 1 x roll 1 x base 100g 100g 1 x meal 100g 100g 100g 100g 20g** 100ml 100g 100g 100g 100g Per sachet
Lowest price/£ £0.44 £0.85 £2.97 £1.26 £1.30 £2.15 £1.59 £1.20 £2.01 £1.96 £0.23 £0.21 £1.98 £1.50 £2.57 £3.76 £1.33
Median price/£ £0.87 £1.00 £4.30 £1.44 £1.45 £4.60 £2.44 £1.42 £5.32 £2.61 £0.46 £0.61 £2.56 £2.53 £3.89 £4.10 £1.33
Highest price/£ £1.07 £1.29 £4.31 £1.91 £2.15 £5.41 £2.44 £2.07 £6.17 £6.85 £2.16 £0.68 £5.40 £2.79 £6.68 £4.10 £1.33
% of foods within group with prices available in the BNF 33% (n=2) 40% (n=2) 33% (n=1) 75% (n=21) 40% (n=2) 58% (n=7) 0% (n=0) 33% (n=2) 0% (n=0) 71% (n=5) 100% (n=4) 71% (n=5) 40% (n=6) 75% (n=6) 27% (n=4) 0% (n=0) 0% (n=0) Mean = 49%
*Savoury mixes are defined as ‘sausage’ or ‘burger’ replacement mixes. primary care. The ACBS reviews applications for borderline substances made by manufacturers.5 Practically, this includes all ONS, enteral feeds and medically-prescribed foods, including low-protein foods and L-amino acid supplements for patients with IMD. When food manufacturers apply for ACBS approval for a new low-protein food product, they must state the price at which it will be available on prescription. The manufacturers are required to compare their product both nutritionally and economically to other similar products on the market and use this as a basis for their proposed price point. If a product is approved and the manufacturer wishes to bring the product to market, the ACBS will alert the
British National Formulary (BNF) of the product, including the price. However, the ACBS has no responsibility for content published by the BNF. THE ROLE OF THE NSPKU IN APPROPRIATE PRESCRIBING
The National Society for Phenylketonuria (NSPKU) has produced guidelines for the maximum number of recommended ‘units’ that a patient can be prescribed per month2 (see Table 1). This is based upon low-protein prescribed foods providing 50% of the energy requirements of the diet and, so, quantities will increase with patient age. An example of a unit is: 500g pasta, 500g flour, two pizza bases, one tub of egg replacer, or one packet of biscuits. www.NHDmag.com June/July 2019 - Issue 145
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IMD WATCH These recommended maximum number of units per month can be helpful in preventing patients from being prescribed an excess of low-protein foods and may help limit cost of prescriptions. THE ROLE OF THE SPECIALIST METABOLIC DIETITIAN AND GP
At our centre, patients on low-protein diets with low-protein prescription foods are reviewed by a metabolic dietitian at metabolic outpatient clinics, when admitted as inpatients and by telephone when reporting blood results. Low-protein food prescriptions can be reviewed at any of these encounters. Metabolic dietitians from the specialist metabolic centre write to the patients’ GPs with prescription requests and clinical commissioning groups (CCGs) via GPs are then responsible for the ongoing prescription of all specialist dietary products.6 Prescriptions can be collected from local pharmacies, or patients can be set up with the delivery company provided by the food manufacturer. LPP recommends the latter option, to avoid ‘out-of-pocket’ expenses and prescribing or dispensing errors. At our centre, unfortunately, some patients report difficulties with obtaining their prescriptions for low-protein foods from the GP. This may be due to the following: • The rarity of IMD – some GPs will not be familiar with these products and may struggle to identify them on the formulary, or they will not be added to an electronic formulary used by the GP surgery. • Products often have to be specially ordered in by pharmacies, resulting in delays between a patient requesting the prescription from the GP and collecting it from the pharmacy. This gap in time could result in difficulty with dietary adherence when unable to obtain certain food items on prescription. Furthermore, the time delay between the order being placed by the pharmacy and the patient receiving the product, can sometimes result in the food item being stale and inedible by the time it is received. • In 2018, the Department of Health and Social Care launched a public consultation on gluten-free prescribing foods and following the outcome, many CCGs stopped prescribing what is described as ‘luxury’ food items (eg, 42
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biscuits, crackers) and will only prescribe ‘staple’ items (eg, bread, flour, pasta), or have stopped prescribing these products altogether.7 This led to some GPs also refusing to prescribe low-protein foods. However, gluten-free foods can be purchased from the supermarket, whereas low-protein foods cannot. Low-protein foods are exempt from this consultation and should continue to be prescribed.4 A REVIEW OF THE COST OF LOW-PROTEIN FOODS
To investigate options to improve cost-effective prescribing of low-protein foods, we collated a cost list of ACBS-endorsed products (n=147) produced by nine different food manufacturers. Prices were taken from the BNF (March-April 2019), and if not available, food manufacturer representatives were asked to provide the costs; the percentage of foods that had their costs listed in the BNF is shown in Table 2. Foods were, grouped into 18 categories (eg, bread rolls, pasta, rice) to allow like-for-like comparison of food prices. Prices were compared on a ‘per portion’, or ‘per 100g basis’ with the exception of egg replacer, where 20g approximately equals one heaped tablespoon. One category was labelled ‘other’ (containing cheese sauce mix, hazelnut spread and croutons); this group was removed from Table 2 as products were too different to compare. Prices ranged significantly for prescribed foods: bread loaves were the cheapest (median = £0.87/100g), whereas savoury (burger/ sausage) mixes were the most expensive (median = £5.32/100g). There appears to be a very high discrepancy between average prices for different types of foods, with some foods, such as biscuits and breakfast bars, costing the most on prescription. Discounting soup sachets, where all items were made by the same manufacturer, breakfast bars had the smallest price range, whereas egg replacers had the highest. It is unclear how such a high variation arises in products accepted by the ACBS, as manufacturers must compare their item nutritionally and economically to other comparable items when proposing them for approval. Prices were available for all low-protein foods, either from the BNF (49%) or food manufacturer representatives (51%). Egg replacer is the only food category to have 100% of its prices available in the BNF, whereas soup sachets, breakfast bars, cereals
IMD WATCH Table 3: The cost per prescription of using the cheapest and most expensive products in each of the five ‘ingredient’ food categories Food category Bread loaf Pasta Rice Flour mix Egg replacer Total cost of prescription
Cheapest item per unit £2.19 £6.29 £5.18 £5.98 £5.17 £24.81
and burgers/ sausage mixes had none of their prices available. When the ACBS approves a food, the price of the item should be made available to the BNF. It is not clear whether prices are not being made available by the food manufacturer, or not being published by the BNF. Lack of visibility of the price of food items is a barrier to cost-effective prescribing. It is time consuming to have to source the information from the manufacturer, particularly when new products are regularly being introduced to the market. Prices of products may change without notification. This all relies on the dietitian having to approach manufacturers for updates on product costs. IMPROVING COST-EFFECTIVE PRESCRIBING IN PRACTICE AT SPECIALIST METABOLIC CENTRES
There are a number of possible approaches to improving cost-effective prescribing of low-protein foods. Firstly, the cheapest items on prescription are the basic ingredients, such as flour mixes, whereas composite items, such as biscuits and breakfast bars, are more expensive. It may not be appropriate to limit prescriptions of composite items, as this removes the patient’s ability to use convenience foods where necessary. However, with cost in mind, encouraging use of basic ingredients and supporting families to cook is important. Many food manufacturers hold ‘low-protein cookery workshops’, which are a great tool for empowering families. Dietitians should always ensure that they discuss cooking skills, knowledge and facilities with families, so that families who enjoy and have the means to cook at home are supported to do so. Secondly, manufacturers could help with cost-effective prescribing by improving price transparency, making the information accessible to all healthcare professionals involved in prescribing low-protein foods. This would involve all prices being available in the BNF, rather than
Most expensive item per unit £4.26 £9.55 £25.80 £6.20 £10.81 £56.62
through food manufacturer representatives. Manufacturers could also ensure that there is better equity in pricing across comparable foods, so that patient choice is not jeopardised by efforts to improve cost-effective prescribing. Thirdly, we have collated a low protein food price list as mentioned above, containing 147 foods across 18 food categories, from nine different food manufacturers. This is designed to assist dietitians in our centre to give informed advice when working with families to request food prescriptions from GPs. This may be particularly pertinent for categories where all food items are similar (such as bread mixes), although may be less so where the flavour of products in the category varies (such as savoury snacks or desserts). Using a selection of common ingredient foods, we have demonstrated the vast difference there can be in overall prescription price, depending on whether foods chosen are the cheapest or most expensive foods within each category (Table 3). Food prices are represented per unit rather than per 100g, using the cheapest and the most expensive product per 100g; this is because products are prescribed on a per unit basis (ie, per bag of pasta rather than per 100g of pasta). CONCLUSION
In summary, it is essential to consider patient choice when requesting a prescription; always opting for the cheapest item in a food category may not be appropriate as this could limit patient choice in the context of an already restricted diet. As dietitians, we need to be conscious of promoting patient choice, whilst being mindful of the cost of lowprotein food prescriptions. This balance can be a challenge in clinical practice. Supporting families to cook at home and improving availability of and transparency in costing of foods may be an option to improve the future of cost effective prescribing of low-protein foods. www.NHDmag.com June/July 2019 - Issue 145
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