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      Home delivery service of low protein foods in inherited metabolic disorders: Does it help?

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          Abstract

          Background

          In the UK, the customary method of obtaining special low protein (LP) foods was by dispensing through a pharmacist (until 2010) for patients with inherited metabolic disorders (IMD) requiring LP diets. Recently, different home delivery services have been introduced to support patient access of low protein foods, but the effectiveness of these services is unclear.

          Aim

          A prospective, longitudinal, observational study to examine the effectiveness and safety of patient home delivery services for LP foods over 12 months in IMD patients requiring a LP diet.

          Methods

          IMD patients/caregivers had the choice of 2 home delivery services (Homeward® and Vitaflo at Home®) as well as access to primary care pharmacy services. Both home delivery services provided a limited range of LP foods. Over a 12-month period, a member of the IMD dietetic team conducted 4 home visits to IMD patients on LP diets using home delivery services for low protein foods. At each visit, caregivers completed a questionnaire consisting of 20 multiple choice and open questions about their prescription experience with special LP foods. The researchers also completed stock checks, assessed ‘use by dates’ and adequacy of home storage for LP foods.

          Results

          In total, 58 patients participated in this study. Over 12 months, 95% ( n = 55/58) of caregivers used their local pharmacy, 93% ( n = 54/58) Homeward® and 78% ( n = 45/58) Vitaflo at Home® to access LP foods. Two home delivery services were used by 41 (71%) caregivers and the remaining 17 (29%) only used one of the home delivery service companies. Each patient only stored a median of 6 (range 0–22) different LP foods at home. Overall, 45% ( n = 26/58) of caregivers reported problems with their GP prescriptions. 30% ( n = 16/53) of caregivers received at least one incorrect prescription when using their pharmacy (e.g. gluten-free foods instead of LP, incorrect product or incorrect product amount), 6% errors ( n = 3/53) with Homeward® and 2% ( n = 1/48) with Vitaflo at Home®. 49% ( n = 26/53) of caregivers said they experienced delayed receipt of LP foods from their pharmacy, compared with 11% ( n = 6/55) from Homeward® and 8% ( n = 4/48) Vitaflo at Home®.

          Conclusions

          Although home delivery services for special LP foods are associated with less errors and delay compared with pharmacies, inaccuracies and inefficiencies still occur and the overall system is complex. We suggest a new, simpler, less fragmented system whereby metabolic dietitians prescribe LP foods. This is likely to result in less burden on NHS resources and ensure a better treatment delivered to IMD patients.

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          Most cited references4

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          Special low protein foods for phenylketonuria: availability in Europe and an examination of their nutritional profile

          Background Special low protein foods (SLPF) are essential in the nutritional management of patients with phenylketonuria (PKU). The study objectives were to: 1) identify the number of SLPF available for use in eight European countries and Turkey and 2) analyse the nutritional composition of SLPF available in one of these countries. Methods European Nutritionist Expert Panel on PKU (ENEP) members (Portugal, Spain, Belgium, Italy, Germany, Netherlands, UK, Denmark and Turkey) provided data on SPLF available in each country. The nutritional composition of Portuguese SLPF was compared with regular food products. Results The number of different SLPF available in each country varied widely with a median of 107 [ranging from 73 (Portugal) and 256 (Italy)]. Food analysis of SLPF available from a single country (Portugal) indicated that the mean phenylalanine content was higher in low protein baby cereals (mean 48 mg/100 g) and chocolate/energy bars/jelly (mean 41 mg/100 g). The energy content of different foods from a sub-group of SLPF (cookies) varied widely between 23 and 96 kcal/cookie. Low protein bread had a high fat content [mean 5.8 g/100 g (range 3.7 to 10)] compared with 1.6 g/100 g in regular bread. Seven of the 12 SLPF sub-groups (58 %) did not declare any vitamin content, and only 4 (33 %) identified a limited number of minerals. Conclusions Whilst equal and free access to all SLPF is desirable, the widely variable nutritional composition requires careful nutritional knowledge of all products when prescribed for individual patients with PKU. There is a need for more specific nutritional standards for special low protein foods.
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            Costs and outcomes over 36 years of patients with phenylketonuria who do and do not remain on a phenylalanine-restricted diet.

            To quantify the costs and consequences of managing phenylketonuria (PKU) in the UK and to estimate the potential implications to the UK's National Health Service (NHS) of keeping patients on a phenylalanine-restricted diet for life.
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              Home delivery of dietary products in inherited metabolic disorders reduces prescription and dispensing errors.

              In the UK, for patients with inherited metabolic disorders (IMD) the traditional system for acquiring essential dietary products [patient prompted prescriptions generated by a medical general practitioner (GP) and dispensed by a chemist] is problematic.
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                Author and article information

                Contributors
                Journal
                Mol Genet Metab Rep
                Mol Genet Metab Rep
                Molecular Genetics and Metabolism Reports
                Elsevier
                2214-4269
                22 March 2019
                June 2019
                22 March 2019
                : 19
                : 100466
                Affiliations
                Birmingham Women’s and Children’s Hospital, Birmingham, UK
                Author notes
                [* ]Corresponding author at: Dietetic Department, Birmingham Women's and Children's Hospital, Steelhouse Lane, Birmingham B4 6NH, UK. anita.macdonald@ 123456nhs.net
                Article
                S2214-4269(19)30049-7 100466
                10.1016/j.ymgmr.2019.100466
                6434332
                91183c12-9b3a-4362-945c-a5335f54651f
                © 2019 The Authors

                This is an open access article under the CC BY license (http://creativecommons.org/licenses/by/4.0/).

                History
                : 16 March 2019
                : 16 March 2019
                Categories
                Research Paper

                low protein foods,home delivery service,prescriptions,imd

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