Single Arm Feasibility Study of a Digital Health App to Support Adults With Managing a PEG Feeding Tube After Insertion

Seven thousand people have a feeding tube inserted directly into the stomach or bowel in the UK each year for the purposes of giving fluid, food or medication via the tube instead of orally. Over one third will experience a complication in the first 12 months after insertion, half of whom will experience it in the first 30 days. For the majority of people pain, infection and leaking are the commonest early complications; for most, these complications are minor and do not require intervention. But they also mimic the symptoms of more serious complications, making it an anxious time for patients and carers and hard for them to discern if and what level of help they need. Six percent of all people with a PEG will have to spend time in hospital having the problem investigated or managed and 5% will die in the first 30 days after a tube insertion, predominantly from procedure related complications.

Currently the insertion of a feeding tube is an invasive process, undertaken on both inpatients and outpatients for a variety of medical reasons including the need for cancer treatment and for medium- or long-term neurological conditions and/or severe learning disabilities (LD) affecting swallowing, often with multiple comorbidities. All these populations have a higher mortality, and in this situation are often further disadvantaged by their illness affecting their ability to communicate. The LD population in particular suffer from inequities of healthcare outcomes and are underrepresented in the physical health research arena.

After the procedure and discharge people/carers are supported by a multidisciplinary team, including a community nurse, to help them use their tube and the associated equipment and information to troubleshoot tube problems in accordance with NICE guidance. This includes use of a pharma-owned digital app for simple device guidance around the electronic equipment. Some areas in the UK have nutrition nurse specialist teams that can be contacted during weekdays for support.

Should a significant complication occur out of normal working hours, people with feeding tubes often end up attending the emergency department as they do not have access to support or advice. This is common as people tend to use their tubes in the evening.

Patients and family in the investigators Patient Advisory Group (PAG) reported it was an 'overwhelming' and 'frightening' experience living with a PEG tube in the first few weeks. The group reported it was hard to access support as an outpatient and slow response to support requests led to unnecessary admissions or prolonged hospital stays. There was a perception of a lack of transition of care between the hospital and community setting and better or repeated information earlier in the process could reduce the learning curve of how to manage their feeding tubes. The group described that, currently provided, written information in the form of leaflets was perceived as "very daunting" and a "bit scary at first". The group suggested the investigators focus on improving the support around implementing the training they received in hospital and access to early advice. All patients reported they used the pharma company apps and would be willing to use an app to support them or ease the transition phase from secondary to community care.