Quality of Life in Scleroderma

It will come as no surprise to know that there is an understanding that Scleroderma may affect your Quality of Life (QoL). As a Specialist Nurse in Scleroderma, the potential impact of this disease has become more and more evident to me over my years working with people who have Scleroderma. One of the vital things which appears to be missing from our armoury of assessments of this disease is a measure which can tell us how it affects the persons QoL instead of solely physical function or laboratory investigations.

With this in mind, I began a pilot study into the effects of Scleroderma on QoL in 2002 as part of a Masters degree. I am now taking this forward into the development of a measure/questionnaire which aims to capture the impact of Scleroderma on your QoL. This has been kindly supported by the Scleroderma Society and the School of Healthcare in the University of Leeds where I am based as a PhD student. Dr Chris Denton of The Royal Free Hospital, which holds the National Scleroderma Database, has also been supportive in this project and I am currently seeking approvals to allow me to work with The Royal Free Hospital in the development of this questionnaire.

So, I am grateful to yourselves and the Society both for your support and for this opportunity to update you as to my progress. The information which forms the basis of this questionnaire is gathered from people with Scleroderma through interviews or focus groups. So far, 24 interviews have been carried out and one focus group. The information people have given me has been both immense and enlightening and after completing several more interviews I will have enough information to form the first stage of the questionnaire.

Turning this information into a questionnaire which is statistically significant is the tricky part, and this will take place with support from the Psychometric Testing Laboratory based at the University of Leeds and headed by Professor Alan Tennant. This process will involve sending out hundreds of copies of the pilot questionnaire and other questionnaires already in use. This will be keeping me busy well into next year!

If you receive a questionnaire it would be greatly appreciated if you could complete and return it. It is vital to the progress of developing a QoL measure designed specifically to identify the impact of Scleroderma.

It is hoped that this measure will be completed by the end of 2006 and I will keep you updated as to its progress. Thanks to you all.

Naomi Reay RGN, RSCN, DN, SRCh, BSc, MA

University of Leeds