Development of patient resources for oncology patients with dysphagia and disease-related malnutrition

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Hanna, Michelle
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University College Cork
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Cancer is a leading cause of both morbidity and mortality globally [1]. Additionally, its incidence is continuing to rise year on year. Thus the development of treatments and supports to tackle and reduce cancer morbidity and mortality is of crucial importance. Current research highlights that the loss of body weight, and significantly lean body mass, contributes to increased risk of mortality in those with cancer [2, 3]. Cancer itself and its treatments can cause a variety of debilitating side-effects. These can in turn affect a person’s appetite and their ability to chew and swallow normally. Those suffering from cancers of the head and neck and upper gastrointestinal tract are particularly susceptible to dysphagia (difficulty swallowing), often related to the location of the tumour and its treatment [4]. These negative effects on appetite and normal eating lead to reduced food intake and quality of life, significant weight loss and malnutrition. A supportive, multifaceted, evidence-based approach from an early stage is required to attenuate the development of malnutrition and thus minimise its detrimental impact on treatment outcomes and quality of life. Involuntary weight loss affects between 50-80% of those with cancer and is associated with reduced quality of life, psychological implications, increased treatment-related complications and poorer survival [5]. Currently, no known cure exists for cancer-induced weight loss. The European Society for Clinical Nutrition and Metabolism (ESPEN) guidelines for cancer patients recommend nutrition counselling as the first line of nutrition therapy, and state that the best way to increase energy and protein intake is with normal food: a food-first approach [6]. Prior to the publication of ‘Good Nutrition for Cancer Recovery’ by University College Cork in 2014 no evidence-based resource existed that provided patients with understandable and reliable nutritional information and nourishing recipes to help attenuate cancer-induced weight loss through a food-first approach. A 130-page, evidence-based resource containing 52 high protein, high calorie recipes was created but has been out of print since 2018. To address this, as part of this thesis, a second expanded edition was created: a 250+ page resource containing information, advice, and a bank of 116 nourishing recipes. This is described in chapter 2. All recipes are fortified with high-protein, high-calorie additions and portion sizes were adjusted to ensure meals were small in volume for those with a reduced appetite. The revision of the original recipes also allowed for an enhanced protein to fat ratio and all recipes comply with the energy and protein goals set by the British Dietetic Association (BDA) for nutritionally vulnerable patients [7]. Patients with solid tumours of their upper gastrointestinal tract are especially vulnerable to cancer-induced weight loss, exacerbated by dysphagia [4]. Difficulty chewing and swallowing reduce dietary intake and puts this population at an increased risk of malnutrition. In 2016, a novel written resource, ‘Eating Well with Swallowing Difficulties in Cancer’ was developed by University College Cork, aiming to help attenuate malnutrition and sarcopenia in cancer patients experiencing dysphagia. It consisted of 59 nourishing, texture-modified recipes and evidence-based nutrition advice and information based on the ‘Irish Consistency Descriptors for Modified Fluids and Food (2009)’ [APPENDIX 4]. Ireland’s changeover in 2019 to the International Dysphagia Diet Standardisation Initiative (IDDSI) led to changes in framework structure, terminology used and testing methods, thus all dysphagia resources required updating for compliance. IDDSI is a global initiative providing universal terminology describing food texture and fluid thickness, as used in dysphagia diets [8]. Chapter 3 of this thesis discusses the development of the written resources aimed to help optimise oral intake and attenuate weight loss in head and neck and upper gastrointestinal cancer patients experiencing dysphagia, according to the IDDSI framework. It outlines the creation of appealing recipes that are nourishing and texture-modified for IDDSI levels 3 and 4. These resources aim to help those with cancer in achieving nutrition requirements with all recipes developed to comply fully with the appropriate IDDSI level. It is hoped that these cookbooks with help both patients and their families cope with the challenges of a texture- modified diet and that they will become a useful resource for dietitians and other health care professionals in providing advice on IDDSI meals. Recipes were fortified with high protein, high calorie additions; portion sizes were adjusted to low-volume for easier eating, and texture was altered to meet modified texture guidelines. Thousands of copies of these resource will be printed and distributed to oncology centres nationwide in order to disseminate this knowledge, free of charge, to cancer patients. Chapter 4 of this thesis describes the development of an evidence-based cancer information and support website. With so much unfiltered information available, there is often a lot of confusion around what to believe in relation to diet and cancer. This can leave people extremely vulnerable to misleading information at what is already a very difficult time in their lives. To address this, a one-stop-shop evidence-based website was created. The aim of this website was to dispel the most common myths and misinformation on diet and cancer and provide simplified evidence-based information for people throughout their cancer journey. The main sections covered included problems which may affect eating, cancer prevention, cancer survivors, dysphagia and cancer myths and misconceptions. The overall conclusions are summarised in Chapter 5. Malnutrition is a condition with a multifactorial aetiology and thus must be treated with an effective multimodal approach. However, this is outside the scope of this thesis which deals with its nutritional aspect. Dietary intake may be optimised by providing patients with a resource of high-calorie high-protein, nourishing recipes to improve oral intake and, potentially, attenuate loss of weight and muscle mass – such as the cookbook ‘Good Nutrition for Cancer Recovery’. For those with cancer experiencing swallowing difficulties in addition to malnutrition, separate resources with specific tailored advice, based on IDDSI guidelines, were published. Prior to these booklets being published, no resource existed to tackle the challenging task of creating high protein high calorie recipes which were also texture-modified according to the IDDSI guidelines. To support both projects and patients throughout their cancer journeys, a comprehensive website with easily accessible evidence-based information was created.
Cancer , Nutrition , Dysphagia , IDDSI , Cachexia , Sarcopenia , Cookbook , Oesophageal cancer , Oropharyngeal cancer
Hanna, M. 2021. Development of patient resources for oncology patients with dysphagia and disease-related malnutrition. MSc Thesis, University College Cork.
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