Research and Surveys
Results of Gorlin syndrome patient survey released on 18th July 2013 at the European Association of Dermato Oncology (EADO) Congress in Hamburg.
The research conducted in people with Gorlin syndrome, which causes highly visible skin tumours, was published by the Gorlin Syndrome Group to raise awareness of the need for greater patient support.
The findings are particularly significant as 97% of patients undergo surgery to remove tumours, with 86% of patients suffering from tumours on their face, 60% on their arms or legs, and 52% on their chest.
The survey revealed that almost half (48%) of patients endure more than 20 surgical procedures although only 15% are offered counselling throughout diagnosis and treatment. Furthermore, 51% of people undergo surgery every few months to manage their condition, with 49% saying these surgeries have a significant emtional impact.
To access full survey results go to Gorlin Syndrome in the UK: a survey of patient need, treatment availability and outcomes.
"Quality of life is a real issue for people with this disease, not least because it requires such frequent surgery, as well as regular hospital check ups" said Margaret Costello, Co-founder, Trustee and Secretary, Gorlin Syndrome Group. While emotional wellbeing is a core part of cancer care elsewhere, it is being unfairly overlooked in this group of people and must be addressed. We hope this research further improves the understanding of this condition and leads to greater support for people with this life-long genetic condition."
Dr. John Lear, Consultant Dermatologist, Central Manchester University Hospitals and lead study author said: "This condition has a profound impact on patients' physical and emotional wellbeing, oftern causing hundres of skin tumours across a person's lifetime. More support is needed to provide the treatment these people need; it is simply not enough to treat the physical symptoms alone.
The Gorlin syndrome survey and development of poster were sponsered by Roche Products Ltd. The Gorlin Syndrome Group Executive Committee extend our sincere thanks to Roche for their support. We would also like to thank Succinct Healthcare Communications for editorial and studio assistance in the preparation of the poster.
Originally produced by Professor P. A. Farndon, Clinical Geneticist, Jim Costello (deceased) and Margaret Costello. We are reliant on a team of medical advisors for the clinical content of the website. We are grateful for their continuing support.
Gorlin Syndrome Group is Registered Charity in the UK - No 1096361