Mrs Elizabeth Reid Kapur, Miss Amy Brown, Prof Saravana Kumar
1Flinders Medical Centre, Adelaide, Australia
Biography:
I am a dietitian working in the state-wide multidisciplinary Motor Neurone Disease (MND) clinic at Flinders Medical Centre, Adelaide. My clinical and research interests centre on collaborating with patients and carers living with MND to develop educational tools that empower informed decision –making. This has led to the creation of PEG Ed an app designed to help patients navigate life with a gastrostomy tube or PEG. With the support of a Flinders Foundation research grant PEG Ed is being evaluated to ensure it aligns with patient and carer needs, incorporating their satisfaction and feedback.
Abstract:
Background:
Percutaneous Endoscopic Gastrostomy (PEG) supports nutrition in Motor Neurone Disease (MND) patients but deciding if and when to use PEG is complex and time-sensitive due to swallowing, nutrition, and respiratory decline. A survey at Flinders Medical Centre found patients relied on the internet and social media for information. To address this gap, the PEG Ed app was co-developed with patients and carers.
Aim:
To demonstrate the impact of PEG Ed app on patient and carer quality of life, carer burden, and knowledge.
Methods:
Patients and their carers attending the multi-disciplinary MND clinic who were considering gastrostomy were invited to participate in this study. Prospective, mixed methods research using quantitative survey and qualitative semi- structured interviews, was used. Quantitative data were analysed using descriptive statistics and qualitative data using thematic analysis.
Results:
Thirty patients participated in the study. After using PEG Ed, 27 (90%) reported improved understanding whilst 25 (83%) felt more confident living with a PEG. Additionally, 24 (76%) said the app helped with decision-making. All patients (100%) would recommend PEG Ed to other patients and found it easy to access and use.
Discussion:
This study enabled patient centred care through a collaborative evidence-informed, shared decision-making process with patients and carers. Empowering patients and families ensure care is appropriate and timely. Improved knowledge places patients and their families at the centre of decision-making process. This positively impacts their everyday life. From a health system perspective, it provides appropriate and high value care.