People with amyotrophic lateral sclerosis (ALS) and other motor neuron diseases (MNDs), as well as their caregivers and healthcare professionals, are being recruited across the U.K. to provide input for the development of a web-based tool to help patients decide if they want a feeding tube.
Patients are being invited through specific National Health Service (NHS) centers, while caregivers and healthcare professionals interested in joining the study, called DiAMoND, are asked to contact the study’s team at [email protected].
Funded by Marie Curie and the MND Association, DiAMoND is led by Sally Wheelwright, PhD, a senior research fellow at the University of Southampton, which is sponsoring the study.
MNDs are characterized by the progressive loss of motor neurons, specialized nerve cells that control skeletal muscles, which are essential for walking, breathing, and swallowing. ALS is a quickly progressing form of MND; other forms include spinal muscular atrophy and primary lateral sclerosis.
About 85% of ALS patients develop problems in swallowing, which can contribute to coughing and choking, malnutrition, dehydration, and weight loss. Swallowing difficulties also increase the risk of food or liquid going into the windpipe, which can cause serious lung infections.
One way of managing them is to have a feeding tube fitted into the stomach through an opening made in the abdomen — a surgical procedure known as a gastrostomy. Food, drink, and certain oral medications can be delivered directly through the tube, and patients can still choose to eat normally.
This approach is thought to improve a patient’s nutrition, quality of life, and survival, but there is limited high-quality evidence to back up this assumption. In addition, some people have concerns about feeding tubes and what it’s like to live with one.
Together, these uncertainties can make the decision of whether to have a feeding tube placed challenging for people living with ALS and other MNDs.
The DiAMoND study aims to develop and test a web-based decision aid that could help these patients with such decisions. Decision aids are tools designed to help patients in making healthcare choices.
This new tool will support the decision-making process by providing accurate and reliable information, clearly explaining the risks and benefits associated with each possible choice, and ensuring the person fully understands their options.
Notably, it will also help patients understand what is most important to them, better ensuring their decision fits their values.
As an online tool, people can control the information they want to see, revisit it as needed, and explore other reliable sources of information provided through links.
The development of the decision aid began with a systematic review of previous research and already available resources.
Now, a series of online interviews with MND patients, their unpaid caregivers, and healthcare professionals will be conducted to make sure the right information is included and presented in the best way possible, as well as gradually improve the tool.
In one of these series of interviews, participants will be asked to go through the web-based tool on their computer and share their thoughts as they go through it (a type of interview known as “think aloud”).
Such interviews, lasting about one hour, will be conducted by a University of Southampton researcher via Microsoft Teams (video call), and will be arranged at a time and date convenient to the participant.
A total of 40 patients, 25 unpaid caregivers, and 25 healthcare professionals are expected to be recruited for the interview phase of the study. Eligible participants must be 18 or older and be able to communicate, either verbally or through other means, in English.
Caregivers must provide unpaid support to a family member, partner, or friend with ALS or other MND that involves face-to-face contact at least three times a week (currently or during the past year). Healthcare professionals must work with individuals with these diseases, be involved in the gastrostomy decision-making process, or support patients through that process.
Researchers will test the web-based decision aid that results in NHS hospitals across the U.K. to make sure that patients, carers, and clinicians find it helpful and easy to use. They will also check whether patients think the tool has helped them come to the right decision for them.
The tool’s final version will be shared widely to ensure that it reaches the people and organizations who need it most.
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