Background Patient’s knowledge about his or her own disease is critical for an acceptable management and improved quality of life. Aspects such as symptoms, treatment, diagnosis, etc. should be known to all patients. In ankylosing spondylitis (AS), ASAS/Eular recommendations for the management of the disease recognize the need to educate the patient on their disease; but how knowledgeable are patients and their families about AS?.
Objectives To assess patients’ and families’ current level of knowledge about AS and to analyse basic predictors of educational level.
Methods A multiple-choice test with 10 questions about different topics related with AS, plus about other diseases and general health, was developed by rheumatology teachers and patients. It was agreed that the answer to these questions should be known to all the patients. The survey was placed at the web-site of a patients’ AS association in Cordoba, Spain (ACEADE), with links to other related websites. Questions about educational level, family history of AS, etc. were added to analyse the association of knowledge level and specific variables.
Results 146 subjects participated in the survey (133 AS patients and 13 family members). Mean score of participants on AS knowledge was 6.82 over 10 and 4.45 over 10 in other diseases. 37.0% of participants demonstrated to have a high level of knowledge about AS (score > 8), compared to 2.1% with this level about other diseases. A disturbing very low knowledge level (< 5) was present in 13.5% of participants. The graphic shows the general scores according to the studied variables. Significant differences in knowledge (p<0.05) were found only between those who belonged to patients’ associations and those who did not.
Conclusions Patients’ and families’ knowledge about AS is fundamental. According to our results, knowledge level is in general acceptable; although in a significant proportion of cases it is too low. Our study underscores the important role of patients’ associations in education on disease.
Acknowledgements The authors would like to thank LIRE and CEDADE, patients’ associations, their colaboration.
Disclosure of Interest None Declared