May 18: Issue 134

Page 12 - ADULT FOOD ALLERGY: POLLEN FOOD SYNDROME

by Kate Roberts

1 Skypala IJ et al (2013). The prevalence of PFS and prevalence and characteristics of reported food allergy; a survey of UK adults aged 18-75 incorporating a validated PFS diagnostic questionnaire. Clinical & Experimental Allergy, 43, 928-940. doi: 10.1111/cea.12104

2 Allergy UK. Oral Allergy Syndrome Factsheet www.allergyuk.org/information-and-advice/conditions-and-symptoms/36-types-of-food-allergy

3 Gupta R et al (2007). Time trends in allergic disorders in the UK. Thorax. 2007 Jan; 62(1): 91-96. doi: 10.1136/thx.2004.038844

4 Kelava N et al (2014). Oral Allergy Syndrome - the need of a multidisciplinary approach. Acta Clin Croat 2014; 53: 210-219

Page 16 - NON-COELIAC GLUTEN SENSITIVITY

By Rebecca Gasche

1 Cooper BT, Holmes GK, Ferguson R, et al. Proceedings: chronic diarrhoea and gluten sensitivity. Gut 1976; 17: 398

2 Ellis A, Linaker BD. Non-coeliac gluten sensitivity? Lancet 1978; 1: 1358-9

3 C Catassi, JC Bai, B Bonaz, G Bouma, A Calabrò, A Carroccio et al. Non-coeliac gluten sensitivity: the new frontier of gluten-related disorders. Nutrients, 5 (2013), pp 3839-3853, 10.3390/nu5103839

4 Molina-Infante J, Santolaria S, Sanders DS and Fernández-Bañares F (2015). Systematic review: non-coeliac gluten sensitivity. Aliment Pharmacol Ther, 41: 807-820. doi:10.1111/apt.13155

5 Aziz I, Hadjivassiliou M, Sanders DS. The spectrum of non-coeliac gluten sensitivity. Nat Rev Gastroenterol Hepatol. 2015 Epub ahead of print

6 Coeliac UK (2018).Gluten sensitivity [online]. Available at: www.coeliac.org.uk/coeliac-disease/about-coeliac-disease-and-dermatitis-herpetiformis/gluten-sensitivity/ [Accessed 08 Mar. 2018]

7 Lomer M and Stuart A (2014). Advanced nutrition and dietetics in gastroenterology. Chichester, England: Wiley Blackwell

8 Drschaer-institute.com (2018).Non-coeliac gluten sensitivity Definition [online]. Available at: www.drschaer-institute.com/uk/non-coeliac-gluten-sensitivity/definition-1069.html [Accessed 08 Mar. 2018]

9 Anaphylaxis.org.uk (2018) [online]. Available at: www.anaphylaxis.org.uk/wp-content/uploads/2015/06/Wheat-Allergy-v5-formatted-with-AC-logo-and-name-1.pdf [Accessed 08 Mar. 2018]

10 Volta U and De Giorgio R (2012). New understanding of gluten sensitivity. Nature Reviews Gastroenterology & Hepatology, 9(5), pp 295-299

11 Volta et al. BMC Medicine 2014, 12:85; A. Fasano, Centre for Coeliac Research & Treatment, Baltimore, USA

12 Volta U, De Giorgio R. New understanding of gluten sensitivity. Nat Rev Gastroenterol Hepatol 2012; 9: 295-9

13 Sapone A, Bai JC, Ciacci C, et al. Spectrum of gluten-related disorders: consensus on new nomenclature and classification. BMC Med 2012; 7: 13. https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-10-13

14 Nice.org.uk (2018). Coeliac disease: recognition, assessment and management. Guidance and guidelines. NICE [online]. Available at: www.nice.org.uk/guidance/ng20/chapter/Recommendations#serological-testing-for-coeliac-disease [Accessed 15 Mar. 2018]

15 Drschaer-institute.com (2018). Non-coeliac gluten sensitivity diagnosis [online]. Available at: www.drschaer-institute.com/uk/non-coeliac-gluten-sensitivity/diagnosis-1077.html [Accessed 14 Mar. 2018]

16 Caio G, Volta U, Tovoli F and De Giorgio R. Effect of gluten-free diet on immune response to gliadin in patients with non-celiac gluten sensitivity. BMC Gastroenterol. 14, 26 (2014)

17 Catassi C, Elli L et al. Diagnosis of Non-coeliac gluten sensitivity (NCGS): The Salerno Experts' Criteria. Nutrients. 2015 Jun 18; 7(6): 4966-77

18 Drschaer-institute.com (2018). Non-coeliac gluten sensitivity therapy [online]. Available at: www.drschaer-institute.com/uk/non-coeliac-gluten-sensitivity/therapy-1081.html [Accessed 08 Mar. 2018]

19 Biesiekierski JR, Peters SL, Newnham ED et al. No effects of gluten in patients with self-reported non-coeliac gluten sensitivity after dietary reduction of fermentable, poorly absorbed, short-chain carbohydrates. Gastroenterology 2013; 145: 320-328.

20 Rumessen JJ, Gudmand-Høyer E. Fructans of chicory: Intestinal transport and fermentation of different chain lengths and relation to fructose and sorbitol malabsorption. Am J Clin Nutr 1998; 68: 357-364

21 Czaja-Bulsa, G (2015). Non coeliac gluten sensitivity - A new disease with gluten intolerance. Clinical Nutrition, 34(2), pp 189-194

22 Gibson P, Skodje G and Lundin K (2017). Non-coeliac gluten sensitivity. Journal of Gastroenterology and Hepatology, 32, pp 86-89

23 Biesiekierski JR, Newnham ED, Shepherd SJ et al. Self-diagnosis of non-coeliac gluten intolerance by Australian adults: failure to exclude coeliac disease or benefit from a gluten-free diet. J Gastroenterol Hepatol 2011; 26: 70-70

24 Wierdsma NJ, van Bokhorst-de van der Schueren MA, Berkenpas M, et al. Vitamin and mineral deficiencies are highly prevalent in newly diagnosed coeliac disease patients. Nutrients 2013; 5: 3975-3992

25 Biesiekierski JR, Newnham ED, Shepherd SJ, et al. Characterisation of adults with a self-diagnosis of non-coeliac gluten sensitivity. Nutr Clin Pract 2014; 29: 504-509.

Page 19 - KETOGENIC DIET THERAPY: LET THEM EAT FAT!

By Susan Wood

1 Neal EG, Chaffe HM, Schwartz RH, Lawson M, Edwards N et al. The ketogenic diet in the treatment of epilepsy in children: a randomised, controlled trial. Lancet Neurology 2008; 7:500-506

2 Kass HR, Winesett SP, Bessone SK, Turner Z, Kossoff EH. Use of dietary therapies amongst patients with GLUT1 deficiency syndrome. Seizure 2016; 35:83-7

3 Fang Y, Xiao-Jai L, Wan-Lin J, Hong-Bin S, Jie L. Efficacy of and patient compliance with a ketogenic diet in adults with intractable epilepsy: A meta-analysis. J Clin Neurol 2015; 11(1): 26-31

4 Nabbout R, Camfield CS, Andrade DM, Arzimanoglou A, Chiron C et al. Treatment issues for children with epilepsy transitioning to adult care. Epilepsy Behav. 2017; 69:153-160

5 www.matthewsfriends.org/medical-section/keto-centres

6 www.epilepsy.org.uk/press/facts (accessed 23.3.18)

7 www.epilepsy.org.uk/info/seizures-explained (accessed 23.3.18)

8 Poff A, Koutnik AP, Egan KM, Sahebjam S, D’Agostino D, et al. Targeting the Warburg effect for cancer treatment: Ketogenic diets for management of glioma. Seminars in Cancer Biology 2018, https://doi.org/ 10.1016/j.semcancer.2017.12.011

9 www.braintumourresearch.org/info-support/what-is-a-brain-tumour (accessed 23.3.18)

10 www.mfclinics.com/keto-college/ (accessed 23.3.18)

Page 26 - WHOLEGRAINS IN THE UK

By Emma Berry

References

1 Scientific Advisory Committee on Nutrition. Carbohydrates and Health (2015). Available at: www.gov.uk/government/publications/sacn-carbohydrates-and-health-report. Accessed 25th February 2018

2 BBC News. Scientific experts: Sugar intake ‘should be halved’ (2015). Available at: www.bbc.co.uk/news/health-33551501. Accessed 7th March 2018

3 British Nutrition Foundation. SACN guidelines and meal planner. No Date. Available at: www.nutrition.org.uk/attachments/article/881/SACN%20guidelines%20meal%20planner.pdf. Accessed 25th Feb 2018

4 The Healthgrain Forum. Healthgrain forum Basics Leaflet (2017). Available at: http://31.217.192.104/~healthgr/wp-content/uploads/2017/08/2017_HGF_Leaflet.pdf. Accessed 25th Feb 2018

5 Healthgrain Forum. Perspective: A Definition for Whole-Grain Food Products - Recommendations from the Healthgrain Forum. Advances in Nutrition. 2017, 8 (4): 525–531. https://doi.org/10.3945/an.116.014001

6 The Whole Grain Council. What is wholegrain? Available at: https://wholegrainscouncil.org/sites/default/files/atoms/files/WGC-WhatIsWholeGrain.pdf. Accessed 7th March 2018

7 Mann KD, Pearce MS and Seal CJ. Providing evidence to support the development of wholegrain dietary recommendations in the United Kingdom. Proceedings of the Nutrition Society. 2017. 76, 369-377

8 Dagfinn A, Keum N, Giovannucci E et al. Wholegrain consumption and risk of cardiovascular disease, cancer and all cause and cause specific mortality: systematic review and dose-response meta-analysis of prospective studies. BMJ. 2016. 353: i2716

9 Mann KD, Pearce MS, McKevith B et al. Wholegrain intake is associated with intakes of other foods and nutrients and some markers of health in the National Diet and Nutrition Survey rolling programme years 1, 2 and 3. Proceedings of Nutrition Society. 2015. 74(OCE1). E102

10 Mann KD, Pearce MS, McKevith B and Thielecke F. Wholegrain intake and its association with intakes of other foods, nutrients and markers of health in the National Diet and Nutrition Survey rolling programme 2008-11. British Journal of Nutrition. 2015. 113(10), 1595-1602

11 Kamar M, Evans C and Hugh-Jones S. Factors influencing adolescent wholegrain intake: A theory-based qualitative study. Appetite. 2016. 101, 125-133. ISSN 0195-6663

12 Chea M, Foster JS, Chiero JD and Mobley AR. Understanding the Barriers to Wholegrain Consumption in Low Income Adults. The FASEB Journal. 2017. 31, s1

13 Schaffer-Lequart C, Lehmann U, Ross A et al. Wholegrain in manufactured foods: Current use, challenges and the way forward. Critical Reviews in Food Science and Nutrition. 2017. 57(8), 1562-1568. 10.1080/10408398.2013.781012

Page 29 - WHEN AND HOW TO START COMPLEMENTARY FEEDING

By Maeve Hanan

1 ESPGHAN (2017). Complementary Feeding: A Position Paper by ESPGHAN Committee on Nutrition

2 HSE (2006). Training Programme for Public Health Nurses and Doctors in Child Health Screening, Surveillance and Health Promotion - Unit 7: Food & Nutrition (www.hse.ie/eng/services/publications/children/unit-7-food-and-nutrition.pdf)

3 Northstone et al (2001). The effect of age of introduction to lumpy solids on foods eaten and reported feeding difficulties at 6 and 15 months

4 Coulthard et al (2009). Delayed introduction of lumpy foods to children during the complementary feeding period affects child’s food acceptance and feeding at 7 years of age

5 SACN (2017). Draft Feeding in the First Year of Life Report

6 Muraro et al (2014). Food Allergy and Anaphylaxis Guidelines Group. EAACI food allergy and anaphylaxis guidelines. Primary prevention of food allergy

7 Lerodiakonou (2016). Timing of allergenic food introduction to the infant diet and risk of allergenic or auto-immune disease. A systematic review and meta-analysis

8 NIAID (2017). Addendum Guidelines for the Prevention of Peanut Allergy in the US (www.niaid.nih.gov/sites/default/files/peanut-allergy-prevention-guidelines-clinician-summary.pdf)

9 Adapted from Manual of Dietetic Practice 4th ed. Section 3: Infants 0 - 1 Years

10 Cameron et al (2012). How feasible is baby-led weaning as an approach to infant feeding? A review of the evidence

11 Cameron et al (2015). Development and pilot testing of baby-led introduction to SolidS - a version of baby-led weaning modified to address concerns about iron deficiency, growth faltering and choking

12 Blissett (2011). Relationships between parenting style, feeding style and feeding practices and fruit and vegetable consumption in early childhood

13 Adapted from Pérez-Escamilla et al (2017). Feeding Guidelines for Infants and Young Toddlers: A Responsive Parenting Approach (http://healthyeatingresearch.org/wp-content/uploads/2017/02/her_feeding_guidelines_report_021416-1.pdf)

14 (Adapted from: Your Baby’s First Solids’ www.nhs.uk/conditions/pregnancy-and-baby/solid-foods-weaning/ and How do I know if my baby is ready to wean? www.bliss.org.uk/how-do-i-know-if-my-baby-is-ready-to-wean

15 WHO Appropriate complementary feeding [accessed February 2018]. www.who.int/elena/titles/complementary_feeding/en/

Page 33 - INFANT WEANING AND DEVELOPMENT OF TASTE PREFERENCES

By Jacqui Lowdon

References

1 Birch LL and Doub AE (2014). Learning to eat: birth to age 2 years. American Journal of Clinical Nutrition 99: 723S-8S

2 JD Skinner, BR Carruth, B Wendy, PJ Ziegler. Children’s food preferences: a longitudinal analysis. J Am Diet Assoc, 102 (2002), pp 1638-1647

3 T Nu, J MacLeod, J Barthelemy. Effects of age and gender on adolescents' food habits and preferences. Food Qual Pref, 7 (1996), pp 251-262

4 S Nicklaus, V Boggio, C Chabanet, S Issanchou. A prospective study of food preferences in childhood. Food Qual Pref, 15 (2004), pp 805-818

5 Schwartz C, Chabanet C, Lange C et al (2011). The role of taste in food acceptance at the beginning of complementary feeding. Physiology and Behaviour 104: 646-52

6 Beauchamp GK and Mennella JA (2009). Early flavour learning and its impact on later feeding behaviour. Journal of Pediatric Gastroenterology and Nutrition, 48: S25-30

7 Schwartz C, Issanchou S and Nicklaus S (2009). Developmental changes in the acceptance of the five basic tastes in the first year of life. British Journal of Nutrition, 102: 1375-85

8 Iwata S, Yoshida R, Ninomiya Y. Taste transductions in taste receptor cells: basic tastes and moreover. Current pharmaceutical design. 2014; 20: 2684-2692

9 Liman ER, Zhang YV, Montell C. Peripheral coding of taste. Neuron. 2014; 81: 984-1000

10 Passilly-Degrace P, Chevrot M, Bernard A, Ancel D, Martin C, Besnard P. Is the taste of fat regulated? Biochimie. 2014; 96: 3-7

11 Tucker RM, Mattes RD, Running CA. Mechanisms and effects of ‘fat taste’ in humans. Biofactors. 2014; 40: 313-326

12 Tordoff MG, Reed DR, Shao H. Calcium taste preferences: genetic analysis and genome screen of C57BL/6J×PWK/PhJ hybrid mice. Genes, brain, and behaviour. 2008b; 7: 618-628

13 Birch LL (1992). Children's preferences for high?fat foods. Nutrition Reviews 50: 249-55

14 SE Coldwell, TK Oswald, DR Reed. A marker of growth differs between adolescents with high vs low sugar preference. Physiol Behav, 96 (2009), pp 574-580

15 Bouhlal S, Issanchou S, Chabanet C, Nicklaus S. ‘Just a pinch of salt’. An experimental comparison of the effect of repeated exposure and flavour-flavour learning with salt or spice on vegetable acceptance in toddlers. Appetite 2014, 83, 209-217

16 Nicklaus S. The role of food experiences during early childhood in food pleasure learning. Appetite 2016, 104, 3-9

17 Lange C, Visalli M, Jacob S, Chabanet C, Schlich P, Nicklaus S. Maternal feeding practices during the first year and their impact on infants’ acceptance of complementary food. Food Qual Preference 2013, 29, 89-98

18 Hetherington MM, Schwartz C, Madrelle J, Croden F, Nekitsing C, Vereijken CMJL, Weenen H. A step-by-step introduction to vegetables at the beginning of complementary feeding. The effects of early and repeated exposure. Appetite 2015, 84, 280-290

19 Wadhera D, Phillips EDC, Wilkie LM. Teaching children to like and eat vegetables. Appetite (2015) 93:75-84.10.1016/j.appet.2015.06.016

20 Drewnowski A. Sensory control of energy density at different life stages. Proc Nutr Soc, 59 (2000), pp 239-244

21 Department of Health (2011). Introducing solid foods. Available at: www.unicef.org.uk/Documents/Baby_Friendly/Leaflets/introducing-solid-foods.pdf (accessed April 2018)

22 Butte N, Cobb K, Dwyer J et al (2004). The Start Healthy Feeding Guidelines for Infants and Toddlers. Journal of the American Dietetic Association 20: 442-54

23 Pac S, McMahon K, Ripple M et al (2004). Development the Start Healthy Feeding Guidelines for Infants and Toddlers. Journal of the American Dietetic Association, 104, 455-67

24 EFSA (European Food Safety Authority) Panel on Dietetic Products, Nutrition and Allergies (2009). Scientific opinion on the appropriate age for introduction of complementary feeding of infants. EFSA Journal 7: 1423, 2-38

25 Perkin MR, Logan K, Tseng A et al (2016). Randomised trial of introduction of allergenic foods in breast?fed infants. New England Journal of Medicine 374: 1733-43

26 Lange C, Visalli M, Jacob S, Chabanet C, Schlich P, Nicklaus S. Maternal feeding practices during the first year and their impact on infants’ acceptance of complementary food. Food Qual Prefer (2013), 29(2): 89-98.10.1016/j.foodqual.2013.03.005

27 Mennella JA. Ontogeny of taste preferences: basic biology and implications for health. Am J Clin Nutr (2014), 99(3): 704S-11S.10.3945/ajcn.113.067694

28 Mennella JA, Trabulsi JC. Complementary foods and flavour experiences: setting the foundation. Ann Nutr Metab (2012), 60(2): 40-50.10.1159/000335337

29 Agostoni C, Decsi T, Fewtrell M et al. (2008). Complementary feeding: a commentary by the ESPGHAN Committee on Nutrition. Journal of Pediatric Gastroenterology and Nutrition 46: 99i110

30 Coulthard H, Harris G and Fogel A (2014). Exposure to vegetable variety in infants weaned at different ages. Appetite 78: 1-6

31 Coulthard H, Harris G and Emmett P (2009). Delayed introduction of lumpy foods to children during the complementary feeding period affects child's food acceptance and feeding at seven years of age. Maternal & Child Nutrition 5: 75-85

32 Coulthard H, Harris G and Emmett P (2010). Long?term consequences of early fruit and vegetable feeding practices in the United Kingdom. Public Health Nutrition 13: 2044-51

33 Grimm KA, Kim SA, Yaroch AL et al (2014). Fruit and vegetable intake during infancy and early childhood. Pediatrics 134: S63-9

34 Skinner JD, Carruth BR, Bounds W et al (2002b). Children's food preferences: a longitudinal analysis. Journal of the American Dietetic Association 102: 1638-47

35 Gregory JE, Paxton SJ and Brozovic AM (2011). Maternal feeding practices predict fruit and vegetable consumption in young children. Results of a 12?month longitudinal study. Appetite 57: 167-72

36 Foterek K, Hilbig A and Alexy U (2015). Associations between commercial complementary food consumption and fruit and vegetable intake in children. Results of the DONALD study. Appetite 85: 84-90

37 Mennella JA and Beauchamp GK (2002). Flavour experiences during formula feeding are related to preferences during childhood. Early Human Development 68: 71-82

38 Maier AS, Chabanet C, Schaal B et al (2008). Breastfeeding and experience with variety early in weaning increase infants’ acceptance of new foods for up to two months. Clinical Nutrition 27: 849-57

39 Maier?Nöth A, Schaal B, Leathwood P et al (2016). The lasting influences of early food?related variety experience: a longitudinal study of vegetable acceptance from 5 months to 6 years in two populations. PLoS one 11: e0151356

40 GK Beauchamp, BJ Cowart, M Moran. Developmental changes in salt acceptability in human infants. Dev Psychobiol, 19 (1986), pp 17-25

41 LL Birch. Dimensions of preschool children's food preferences. J Nutr Educ, 11 (1979), pp 77-80

42 P Pliner, M Pelchat, M Grabski. Reduction of neophobia in humans by exposure to novel foods. Appetite, 20 (1993), pp 111-123

43 P Rozin, L Hammer, H Oster, T Horowitz, V Marmora. The child's conception of food: differentiation of categories of rejected substances in the 16 months to 5 year age range. Appetite, 7 (1986), pp. 141-151

44 AE Fallon, P Rozin, P Pliner. The child's conception of food: the development of food rejections with special reference to disgust and contamination sensitivity. Child Dev, 55 (1984), pp 566-575

45 LL Birch. Dimensions of preschool children's food preferences. J Nutr Educ, 11 (1979), pp. 77-80

46 LL Birch, L McPhee, L Steinberg, S Sullivan. Conditioned flavour preferences in young children. Physiol Behav, 47 (1990), pp 501-505

47 SL Johnson, L McPhee, LL Birch. Conditioned preferences: young children prefer flavours associated with high dietary fat. Physiol Behav, 50 (1991), pp 1245-1251

48 S Anzman-Frasca, JS Savage, ME Marini, JO Fisher, LL Birch. Repeated exposure and associative conditioning promote preschool children's liking of vegetables. Appetite, 58 (2011), pp 543-553

49 49. LL Birch, L McPhee, BC Shoba, E Pirok, L Steinberg. What kind of exposure reduces children's food neophobia? Looking vs tasting. Appetite, 9 (1987), pp 171-178

50 JA Mennella, CP Jagnow, GK Beauchamp. Prenatal and postnatal flavour learning by human infants. Pediatrics, 107 (2001), pp E88-E93

51 LL Birch, DW Marlin. I don't like it; I never tried it: effects of exposure on two-year-old children's food preferences. Appetite, 3 (1982), pp 353-360

52 J Wardle, LJ Cooke, EL Gibson, M Sapochnik A Sheiham, M Lawson. Increasing children's acceptance of vegetables; a randomised trial of parent-led exposure. Appetite, 40 (2003), pp 155-162

53 SL Johnson, L Bellows, L Beckstrom, J Anderson. Evaluation of a social marketing campaign targeting preschool children. Am J Health Behav, 31 (2007), pp. 44-55

54 Swedish National Food Agency (2012). Good food for infants under one year. www.livsmedelsverket.se/globalassets/english/food-habits-health-environment/dietary-guidelines/good-food-for-infants-under-one-year.pdf (accessed April 2018)

55 Schwartz C, Madrelle J, Vereijken CMJL et al (2013). Complementary feeding and ‘donner les bases du goût' (providing the foundation of taste). A qualitative approach to understand weaning practices, attitudes and experiences by French mothers. Appetite 71: 321-31

56 Netherlands Nutrition Centre (2016). Available at: www.voedingscentrum.nl/eerstehapjes (accessed April 2018)

Page 37 - MANAGING ADULT MALNUTRITION IN THE COMMUNITY: NEW UPDATED MATERIALS LAUNCHED

By Anne Holdoway

References

1 Elia M and Russell CA. Combating Malnutrition: Recommendations for Action. Report from the advisory group on malnutrition, led by BAPEN. 2009.

2 Office for National Statistics. www.ons.gov.uk/peoplepopulationandcommunity/populationandmigration/populationestimates/articles/overviewoftheukpopulation/mar2017 [Accessed 27/03/18]

3 All Party Parliamentary Group on Hunger. Hidden Hunger and Malnutrition in the Elderly. January 2018. www.frankfield.co.uk/upload/docs/Hidden%20hunger%20and%20malnutrition%20in%20the%20elderly.pdf [Accessed 27/04/18]

4 Elia M, on behalf of the Malnutrition Action Group (BAPEN) and the National Institute for Health Research Southampton Biomedical Research Centre. The cost of malnutrition in England and potential cost savings from nutritional interventions (full report). 2015. www.bapen.org.uk/pdfs/economic-report-full.pdf [Accessed 27/04/18]

5 Stratton RJ et al. Disease-related malnutrition: an evidence-based approach to treatment. Oxford: CABI publishing; 2003

6 The document and supporting patient materials have been endorsed by the following associations:

o British Association for Parenteral and Enteral Nutrition (BAPEN)

o British Dietetic Association (BDA)

o British Pharmaceutical Nutrition Group (BPNG)

o National Nurses Nutrition Group (NNNG)

o Primary Care Pharmacists Association (PCPA)

o Primary Care Society for Gastroenterology (PCSG)

o Royal College of General Practitioners (RCGP)

o Royal College of Nursing (RCN)

o Royal Pharmaceutical Society (RPS)

o The Patients Association

Page 39 - NUTRITION IN A GROWING AGEING POPULATION

By Aliya Porter

References

1 1 Antoneta Granic Nuno Mendonça, Tom R Hill, Carol Jagger, Emma J Stevenson, John C Mathers and Avan A Sayer (2018). Nutrition in the Very Old. www.mdpi.com/2072-6643/10/3/269/pdf

2 www.soilassociation.org/our-work-in-scotland/scotland-news/2017/good-food-in-care-homes/

Page 49 - UNPLANNED PREGNANCY IN WOMEN WITH PHENYLKETONURIA (PKU) - A DIETETIC EMERGENCY

By Rachel Wilson RD Written in collaboration with: Charlotte Ellerton RD

References

1 Lenke RR and Levy HL. Maternal phenylketonuria and hyperphenylalaninemia: an international survey of the outcome of untreated and treated pregnancies. New England Journal of Medicine, 1980. 303(21): p 1202-1208

2 Koch R et al. The Maternal Phenylketonuria International Study: 1984-2002. Pediatrics, 2003. 112(6 Pt 2): p 1523

3 Waisbren SE et al. Psychosocial factors in maternal phenylketonuria: prevention of unplanned pregnancies. American Journal of Public Health, 1991. 81(3): p 299-304

4 Trefz FK et al. Management of adult patients with phenylketonuria: survey results from 24 countries. European Journal of Pediatrics, 2015. 174(1): p 119-27

5 van Wegberg AMJ et al. The complete European guidelines on phenylketonuria: diagnosis and treatment. Orphanet Journal of Rare Diseases, 2017. 12(1): p 162

6 Smith I, Beasley MG and Ades AE. Effect on intelligence of relaxing the low phenylalanine diet in phenylketonuria. Archives of Disease in Childhood, 1991. 66(3): p 311-316

7 Cleary M and J Walter. Assessment of adult phenylketonuria. Annals of clinical biochemistry, 2001. 38(5): p 450-458

8 Levy HL. Historical background for the maternal PKU syndrome. Pediatrics, 2003. 112(Supplement 4): p 1516-1518

9 American Academy of Pediatrics. Maternal Phenylketonuria. Pediatrics, 2001. 107(2): p 427-428

10 Lee P et al. Maternal phenylketonuria: report from the United Kingdom Registry 1978-97. Archives of Disease in childhood, 2005. 90(2): p 143-146

11 Maillot F et al. Factors influencing outcomes in the offspring of mothers with phenylketonuria during pregnancy: the importance of variation in maternal blood phenylalanine. The American journal of clinical nutrition, 2008. 88(3): p 700-705

Page 53 - THE POLITICS OF PKU

By Suzanne Ford

References

1 van Spronsen F et al (2017). Key European guidelines for the diagnosis and management of patients with phenylketonuria. The Lancet Diabetes and Endocrinology Vol 5, Issue 9, September 2017, p 743-756 

2 Anita MacDonald, T Alexander Smith, Shamika de Silva, Veronica Alamc, Jeanni MT van Loond. The personal burden for caregivers of children with phenylketonuria: a cross-sectional study investigating time burden and costs in the UK. Molecular Genetics and Metabolism Reports 9 (2016) 1-5

3 Treatment adherence and psychological wellbeing in maternal carers of children with phenylketonuria (PKU). Medford et al; JIMD Reports 2017; 37 107-114

Page 56 - LIFE WITH PKU: WORK IN PROGRESS

By Sharon Buckley

References

1 Carpenter K, Wittkowski A, Hare DJ, Medford E, Rust S, Jones SA and Smith DM (2018). Parenting a child with phenylketonuria (PKU): an Interpretative Phenomenological Analysis (IPA) of the experience of parents: Journal of Genetic Counselling, 1-13

2 Rocha JC, Macdonald A and Trefz F (2013). Is overweight an issue in phenylketonuria? Molecular Genetics Metabolism, 110 (suppl): S18-S24

3 Brumm VL, Bilder D and Waisbren SE (2009). Psychiatric disorders and symptoms in Phenylketonuria. Molecular Genetics and Metabolism, 99, S59-S63

4 Ahring K, Be´langer-Quintana A, Dokoupil K, Gokmen-Ozel H, Lammardo AM, MacDonald A, Motzfeldt K, Nowacka M, Robert M and Van Rijn M (2011). Blood phenylalanine control in phenylketonuria: a survey of 10 European centres. European Journal of Clinical Nutrition, 65, 275-278

5 Macdonald A, Gokmen-Ozel H, Van Rijin M and Burgard P (2010). The reality of dietary compliance in the management of phenylketonuria, Journal of Inherited Metabolic Diseases: 33(6): 665-70

6 Witalis E, Mikoluc B, Motkowski R, Sawicka-Powierza J, Chrobot A, Didycz B, Lange A, Mozrzymas R, Milanowski A, Nowacka M, Piotrowska-Depta M, Romanowska H, Starostecka E, Wierzba J, Skorniewska M, Wojcicka-Bartiomiejczyk BI, Gizewska M and Car H (2017). Phenylketonuria patients' and their parents' knowledge and attitudes to the daily diet - multi-centre study: Polish Society of Phenylketonuria, Nutrition and Metabolism, doi: 10.1186/s12986-017-0207-1

7 Rotter JB (1966). Generalised expectancies for internal versus external control of reinforcement. Psychological Monographs, 80: 1-28

8 Antshel KM, Brewster S and Waisbren SE (2004). Child and parent attributions in chronic paediatric conditions: phenylketonuria (PKU) as an exemplar. Journal of Child Psychology and Psychiatry, 45, 622-630

9 Werner EE and Smith RS (1982). Vulnerable but invincible: a study of resilient children. New York: McGraw-Hill; 1982

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