IntroductionMotor neuron disease (MND) is a progressive, incurable disease, characterised by degeneration of the nerves in the brain and spinal cord. Due to the multisystem effects of the disease, patients are faced with many complex, time-sensitive decisions, one of which is the decision on gastrostomy feeding. There are currently no published decision aids (DAs) to support patients making this decision in the UK. This study will develop and pilot a patient DA to provide evidence-based information on gastrostomy placement and feeding that is relevant to people with MND; communicate the risks and benefits associated with each option; check understanding and clarify personal values and preferences, enabling patients to make a decision congruent with their values and appropriate for them.Methods and analysisA two-phase process, observing the International Patient Decision Aid Standards, will be used to develop the DA, over 24 months starting January 2019. Phase 1 will use literature reviews and stakeholder interviews and surveys to identify essential content for the DA, and explore the best way to present this. In the second phase, a prototype DA will be developed and revised using stakeholder feedback in an iterative process. Stakeholders will include individuals with MND, their carers and the healthcare professionals working with them.Ethics and disseminationEthical approval for the study has been granted by West of Scotland Research Ethics Service, reference 19/WS/0078. Study findings will be disseminated through academic and non-academic publications, conference presentations, stakeholder websites and social media. A feasibility study will follow to explore the acceptability and practicality of the DA for patients, carers and HCPs in practice and to assess whether the DA shows promise of being beneficial for the intended population.
Colorectal cancer (CRC) is the third most common cancer globally, with nearly 1.8 million new cases in 2018 [1]. The incidence of CRC is expected to continue to rise, with the number of cases annually set to reach 3 million by 2040 [2]. The reason for this growth is thought to be multi-factorial, but lifestyle risk factors such as diet and obesity play a pivotal role [3].In addition to an association with aetiology, diet and nutritional status also have an effect on treatment outcomes, complications and mortality in CRC [4,5]. Obesity increases the risk of cancer recurrence [6], impairs response to targeted therapies and reduces survival rates [7]. At the other end of the spectrum, under-nutrition and weight loss are frequently seen in CRC, with up to 25% of patients undernourished at the point of entry to secondary care [8] and over 50% with preoperative weight loss [9]. Under-nutrition has significant negative consequences for patients with CRC, including increased adverse effects during chemotherapy [10], shorter survival times [10], longer hospital stays [11] and reduced quality of life [12]. In some cases, involuntary weight loss, low skeletal muscle mass and function, and/or nutrient deficiencies can be masked by an overweight or obese presentation [8,13]. This paradox may result in the under-detection of malnutrition in this patient group, leaving patients vulnerable to its harmful consequences [14].Irrespective of nutritional status, individuals with CRC are likely to need to alter their diet throughout their treatment and recovery;
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