Background Inflammatory rheumatic diseases are characterized by pain, stiffness, fatigue, reduced functioning and reduced wellbeing, and can consequently affect patients in their everyday life.
Young people with rheumatic disease have to deal with the normal challenges that comes with their age, such as starting an education, adjusting to working life, relating to friends, family and partners, and handling physical and emotional changes; in addition to coping with their rheumatic disease. These patients may therefore have other preferences to patient education then other patient groups.
Objectives The objective of this quality project was to gain insight in young patient's preferences of perceived educational needs before planning a patient education program based on our findings.
Methods The participants (N=20) were patients with an established rheumatic disease aged 18-25 years visiting the rheumatology outpatient clinic at St. Olavs Hospital from June to December 2014. All patients were asked to answer a questionnaire regarding preferences on content and structure of a patient education program. The questions were:
Are you interested in participating in a patient education program for young adults?
What time of the day and duration of the program would you prefer?
Which topics would you like to have in a program?
Why would you participate in a patient education program?
All questions had boxes to tick, and on the question on topics, the patients could also write other topics then the ones listed. Patients were able to tick more than one box on each topic.
Results 95% of the patients wanted to participate in a patient education program for young adults. 42% preferred an organization with two meetings in the afternoon lasting for 4 hours each. The patients wanted the topics to be: Diet (60%), to live with a chronic rheumatic disease (55%), social benefit rights (50%), physical exercise (45%), hearing other young adults experiences (40%), pregnancy (35%), disease information (35%), adaptive equipment's (25%), sex and intimate relationships (20%) and information about patient organizations (10%).
55% answered that the most important for them if they were to participate in an education program would be learning more about how to live with their rheumatic disease, 45% said that meeting others with a rheumatic disease was important and only 20% meant that learning more about the rheumatic disease itself was most important.
Conclusions To develop a patient education program for young adults, it is important to know the patients preferences. From this questionnaire we learned that patients were interested in an educational program targeted specifically at young adults. Their main focus is to learn more about how to live with their disease in a best possible way, and meeting others with the same disease to learn from each other.
Disclosure of Interest None declared