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1.
Colorectal Dis ; 23(12): 3227-3233, 2021 12.
Artigo em Inglês | MEDLINE | ID: mdl-34605160

RESUMO

AIM: Nutrition is associated with aetiology and impacts outcomes in colorectal cancer (CRC). This study aimed to explore nutritional symptoms and concerns of patients with CRC and CRC dietetic resource across the UK. METHODS: Study 1 is a descriptive analysis of nutrition-related measures in the ColoRectal Wellbeing (CREW) study, a prospective 5-year longitudinal cohort study of a representative sample of 872 adults with non-metastatic CRC. Study 2 is a descriptive analysis of data collected using a freedom of information request to all UK trusts/boards on dietetic resources for CRC. RESULTS: Study 1 found that 31% of CREW participants wanted more diet and lifestyle advice. At 3 months post-surgery, 10% reported poor appetite. A fifth experienced weight loss and 16% had concerns regarding weight loss 9 months post-surgery. In study 2 just 3% of hospitals providing CRC services had a dedicated CRC dietitian (hepato-pancreato-biliary, 11.1%; head and neck cancer, 14.3%). There was no dietetic outpatient follow-up of CRC patients in 72% of hospitals. CONCLUSIONS: Dietetic resource for patients with CRC is scarce even though weight loss, poor appetite and unmet needs are common and persist over time. Work is needed to embed nutritional care into the management of patients with CRC.


Assuntos
Neoplasias Colorretais , Estado Nutricional , Adulto , Neoplasias Colorretais/complicações , Dieta , Humanos , Estudos Longitudinais , Estudos Prospectivos
2.
BMJ Open ; 9(12): e032364, 2019 12 18.
Artigo em Inglês | MEDLINE | ID: mdl-31857308

RESUMO

INTRODUCTION: Motor 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 ANALYSIS: A 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 DISSEMINATION: Ethical 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.


Assuntos
Técnicas de Apoio para a Decisão , Gastrostomia/psicologia , Doença dos Neurônios Motores/complicações , Cuidadores/psicologia , Tomada de Decisão Compartilhada , Estudos de Viabilidade , Humanos , Doença dos Neurônios Motores/psicologia , Projetos Piloto , Qualidade de Vida
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