A group of clinicians, nurses and patient & carer representatives began work in mid-2018 to produce a national clinical guideline for head & neck mucosal melanoma. The Guideline Development Group (GDG) was led by Professor Kevin Harrington from The Institute of Cancer Research, with project management and methodological support provided by Nancy Turnbull, the Project Manager, and funding by Melanoma Focus. Work on this project is now complete. For further details follow this link and for the guideline documents go to the resources page.
GDG patient representative member Gillian Paterson commented:”As a patient who was diagnosed with sino-nasal mucosal melanoma 3 years ago, the new guideline information leaflet for patients and carers would have been so helpful to me and my family, had it been available to us when I was first diagnosed. In particular, it would have provided us with accurate information about this rare condition and would have given me the confidence to ask informed questions about the options for treatment and how my condition should be monitored in the future.”
Professor Kevin Harrington said: “Head & Neck Mucosal Melanoma (HNMM) is a rare condition that can be devastating and life-changing for patients, as well as for their families and friends. However information about the disease is scarce and mostly based on experience of melanoma in general, or of the common types of cancer that involve the head and neck. There have been very few randomised controlled trials that involve patients with HNMM when compared with melanoma affecting the skin. Therefore, there is only a small evidence-base with which to work. In the face of these challenges, the GDG was forced to draw on evidence that came almost exclusively from observational studies. In reviewing and evaluating these sources, NICE-accredited methodology in the form of a series of PICO questions was used to impose the necessary scientific rigour on the process.
“The product of these exhaustive deliberations – the HNMM Guideline – will endure for many years and will be updated regularly under Melanoma Focus auspices. It will help clinicians in the UK and beyond to understand how to diagnose and treat this often deadly disease. These conclusions are also intended for use by patients, with a lay version written in non-scientific language produced to accompany the main document.
“Especially in a situation where there was a dearth of hard scientific evidence, the skill of the GDG members was paramount – both in interpreting the limited data and in drawing on their own clinical experience of treating people suffering from this disease. The members of the group gave freely of their time in a complex task that took them away from their already busy working lives. They did this generously and on an entirely pro bono basis, aided by valuable input from patient and carer representatives.
“I wish to record my thanks to all those involved – clinicians, nurses, patients, as well as to the many organisations and individuals who contributed their wisdom and knowledge in reviewing our findings during the consultation process. I also wish to extend my thanks to the team at Melanoma Focus for having the vision to commission these guidelines and for its support in facilitating meetings and during the process of drafting the guideline documents.”