Home Enteral Nutrition Performance (HELP) study: the health, wellbeing, and nutritional outcomes of long-term enterally fed patients

Condition observed: Adult patients (>18 years) who are being tube fed (enteral feeding) at home under active care for more than 4 weeks. All assessments will be carried out in person at the participants home or at the community base clinic, unless otherwise specified. - Blood sample collection to determine micronutrient deficiencies (vitamin B12, Folate, selenium, Vitamin D, Copper, Zinc, Iron) - one sample collected independently from other measures - 15 minutes maximum per participant. Blood samples will be collected by a phlebotomist and one research team member will oversee the process; - Dietary intake - one in-person 24-hour dietary recall, - Quality of life assessment – 2 questionnaires, 1 generic,1 condition specific, and exploratory interview questions, - Equity of care assessment – 1 questionnaire, and exploratory interview questions, - Physical examination of physical signs and symptoms of nutrient deficiencies. A member of the research team will conduct a routine physical exam using a self- compiled set of physical measures to indicate nutritional deficiency. The in-person 24h-recall, 3 questionnaires and physical examination will all be completed in a 45-60 minute session by a member of the research team; - Four further 24-hour dietary recalls will be conducted over the phone by a research team member over the next 3 weeks, taking about 10-15 minutes each - the Charleston’s comorbidity evaluation – will be conducted over the phone following the final 24h-recall, taking a maximum of 5 minutes. Healthcare staff perceptions on the quality of care, patient satisfaction and equity of care will be collected during a minimum of three focus groups (4-8 members) moderated by one research team member, taking about 1-1.5 hours each.