Medically Unexplained Dysphagia

Medically Unexplained Dysphagia

Medically Unexplained Dysphagia (MUD) can be defined as oropharyngeal dysphagia occurring without demonstrable abnormalities in the anatomy of the upper aero-digestive tract or swallowing physiology.  However, within the published literature and clinical experience, numerous words/ terms have been used to diagnose and explain the condition.  This had led to a lack of clarity between and within specialties when defining and diagnosing this condition.  It is hoped that consensus will be reached regarding the most helpful and appropriate terminology that can be used when explaining, diagnosing and treating MUD. 

We are currently undertaking a Delphi Study and more information about this work is given below, along with a link to the survey.

Invitation and summary

Do you work with people with a medically unexplained (e.g. ‘functional’ or ‘psychogenic’) oropharyngeal dysphagia (MUD)?

If ‘yes’ here is an opportunity to participate in a survey to explore how different professionals across the range of involved specialties talk about MUD.

Jennifer Short is a speech and language therapist (SLT) carrying out clinical work and research with the Bristol Speech and Language Therapy Research Unit (BSLTRU). We are exploring the terminology used in the management of MUD.

We would like to invite you to participate in a Delphi survey. Information gathered will be confidential, all questions are optional and you are not obligated to complete any further survey if you take part in this one.

What’s involved?

MUD can be defined as oropharyngeal dysphagia occurring without demonstrable abnormalities in the anatomy of the upper aero-digestive tract or swallowing physiology.  However, within the published literature and clinical experience, numerous words/ terms have been used to diagnose and explain the condition.  This had led to a lack of clarity between and within specialties when defining and diagnosing this condition.

It is hoped that consensus will be reached regarding the most helpful and appropriate terminology that can be used when explaining, diagnosing and treating MUD.  Your responses will be critical in providing expert opinion on this under researched area.  They will also help inform the development of treatment pathways and hopefully improve patient outcomes.

Explanation: purpose of and background to the research

Currently there is a lack of consistent terminology used within a range of different specialisms. This inconsistency makes it very difficult to conduct research, draw meaningful conclusions from the research and to manage patients with MUD effectively across their healthcare journey. Exploring and identifying consensus in terminology amongst the relevant professional groups to use going forward will be useful for both practising clinicians and patients, as well as in future research

What would taking part involve?

This is a Delphi method survey which is a systematic way of accessing expert opinion and exploring consensus on use of terminology.  There are typically 3 rounds of questions. This is the first round and consists of open questions which will help me to explore terminology use and the reasoning behind it.  Subsequent surveys are likely to consist of tick box responses.

What are the possible benefits of taking part?

There are no direct benefits to participants taking part in this study. However, it is hoped that the study findings may inform practice in the future.

What are the possible disadvantages and risks of taking part?

No disadvantages or risks have been identified. It is believed that there are no risks to you in participating in the research. However, in the unlikely event that something does go wrong, and you are harmed during the research study there are no special compensation arrangements. If you are harmed and this is due to someone’s negligence then you may have grounds for a legal action for compensation against North Bristol NHS Trust but you may have to pay your legal costs. The normal National Health Service complaints mechanisms will still be available to you.

Further supporting information

What will happen if I don't want to carry on with the study? There is an option at the end of the questionnaire to give your email if you wish to be contacted for the 2nd round of the survey. You are not obligated to provide this email and even if you do you can change your mind and not respond to the 2nd round survey when it is delivered.
How will my information be kept confidential? All data will be kept confidential and password protected on a secure system and only accessible by the chief investigator and co-applicant. North Bristol NHS Trust is the sponsor for this study based in the United Kingdom.  We will be using information from you in order to undertake this study and will act as the data controller for this study. This means that we are responsible for looking after your information and using it properly. We are asking you to provide your name and signature on the consent form and this form will be kept, however, your details will not be directly linked to the transcript of the study interview.
North Bristol NHS Trust will use your name, and contact details to contact you about the research study, and to oversee the quality of the study.  Individuals from North Bristol NHS Trust and regulatory organisations may look at your research records to check the accuracy of the research study.  The only people in North Bristol NHS Trust who will have access to information that identifies you will be people who need to contact you to arrange a time for the interview, to check you are happy with the content of the transcript or to audit the data collection process.  Sam Harding will be the only person who analyses the interview, and the transcript will not contain information that will be able to identify you. No other person analysing the data will be able to identify you or find out your name or contact details.

North Bristol NHS Trust will keep identifiable information about you (the consent form) from this study for 10 years after the study has finished.
Your rights to access, change or move your information are limited, as we need to manage your information in specific ways in order for the research to be reliable and accurate. If you withdraw from the study, we will keep the information about you that we have already obtained. To safeguard your rights, we will use the minimum personally-identifiable information possible.

You can find out more about how we use your information at: www.nbt.nhs.uk/research-innovation/our-research/patient-information-health-care-research or by contacting Jennifer Short.

What will happen to the results of this study?

You may request to see the final study report at the end of the study. It is hoped that this will be presented at relevant conferences, written up for peer reviewed publication, shared with the Royal College of Speech and Language Therapists (RCSLT) and potentially contribute to consensus guidelines.

Who is organising and funding this study?

This is a North Bristol NHS Trust sponsored study, made possible with charitable funding through the Speech and Language Therapy Department (PAT Fund).

How have patients and the public been involved in this study? A PPI group has been involved in study and questionnaire design, providing feedback on the aims of the study and piloting the survey.

Who has reviewed this study? This study has HRA approval and has been reviewed by the Research and Innovation department at NBT.

Further information and contact details.

Jennifer Short: Jennifer.Short@nbt.nhs.uk
T: 0117 41 43951/ 43959

Medically Undiagnosed Dysphagia Delphi Survey - Round 1