[2008] [PAR0015] NEW SURVEY OF 1000 PATIENTS HIGHLIGHTS BURDEN OF DISEASE IN SCLERODERMA

A.H. Mawdsley MBE Patient Information, Raynaud's and Scleroderma Association, Alsager, United Kingdom

Background: Results from a new survey conducted by the UK Raynaud's & Scleroderma Association (RSA), of people with scleroderma (systemic sclerosis), has revealed the plight suffered by those living with this chronic disease.
Objectives: An anonymous questionnaire was completed by patients with a diagnosis of scleroderma to evaluate disease burden and assess the availability of health services for this disease.
Methods: The survey of more than 1,000 patients in the UK asked respondents to consider the everyday tasks that many people take for granted, and assess the impact on their lives.
Results: 94% of the respondents were female and 6% were male. Over three quarters of the respondents were aged over 55, with 31% aged between 55 and 64, 30% between 65 and 74 and 16% over 75. Just 7% were under the age of 44. 78% of patients felt that living with the condition had impacted significantly on their overall quality of life. More than 50% of patients living with scleroderma commented that their inability to complete every day tasks such as walking, cooking, housework and gardening, had some or major impact on their daily lives. Over half of patients were also unable to continue with hobbies, social activities and holidays. A quote from one respondent sums up the feelings of so many "It has completely changed my life over the years. My confidence has gone, being unable to do so many things that most people take for granted". Almost a third of respondents have given up their jobs as a result of the disease with a further 9% having reduced their hours or moved to part time employment. 53% of patients also felt that their self esteem has been damaged since being diagnosed with scleroderma. Although most doctors realise that scleroderma can be life-threatening by damaging the lungs, heart or kidneys they may not appreciate the potentially devastating impact of the disease on almost all apects of daily life. This survey provides valuable insight from those that know best - scleroderma patients. It also highlights the need for better and more consistent high quality education and treatment from healthcare professionals.
Conclusion: Many people with scleroderma who took part in the new survey shared their experiences in the hope that more people will be diagnosed and treated quickly. The results also highlighted the need for greater support for patients from healthcare professionals with almost a third of respondents stating they were not aware of the type of scleroderma they have. The deadly nature of scleroderma means that it is crucial for patients to have a good understanding and education of the disease they are forced to live with every day.

Ann Rheum Dis 2008;67(Suppl II):685

Evaluating and improving the quality of information for Patients