Elsevier

Joint Bone Spine

Volume 71, Issue 6, November 2004, Pages 550-556
Joint Bone Spine

Original article
Patient knowledge of their disease: a French multicenter study in ankylosing spondylitis

https://doi.org/10.1016/j.jbspin.2004.09.001Get rights and content

Abstract

Objectives.– To assess knowledge of ankylosing spondylitis (AS) by patients and to identify factors associated with knowledge.

Methods.– Ninety patients receiving follow-up in France for AS completed a disease knowledge auto-questionnaire yielding a correct answer score [CAS] and a correct item score [CIS]. Correlations between these scores and other factors were examined.

Results.– Mean CAS was 16.4/25 (SD = 4.8) and mean CIS 7.3 ± 3.1/14. Female gender, higher educational level, having read about AS, being aware of AS support groups, and having received longer tertiary-care hospital management were associated with better knowledge. In the multivariate analysis, only three factors were independently associated with the level of knowledge in this population: “reading about AS”, “level of general education”, and “awareness of an AS support group”.

Conclusion.– Knowledge of AS by French patients was lower than previously reported in a British population. Although education should be offered to all AS patients, the need may be greater in those with limited formal schooling. Booklets on the disease and contact with patient groups seem to be useful tools for improving knowledge of the disease.

Introduction

Patient education is generally recognized as an important component of comprehensive management programs for chronic diseases. Positive effects of patient education programs, particularly in chronic joint disease, include improvements in patient knowledge about the disease, patient compliance with treatment [1], and health care [2].

Ankylosing spondylitis (AS) is a chronic, inflammatory spinal and joint disease that seems nearly as prevalent as rheumatoid arthritis, at least in Western Europe [3], [4]. Furthermore, onset usually occurs at a young age, and various studies have shown that AS leads to a reduction in well being, to disability, handicap, withdrawal from labour force, and, of course, high direct or indirect costs [5], [6], [7]. Therefore, patient education may be particularly important in AS. Educational programs should focus on the areas in which patient knowledge is often deficient and on the patient subgroups that are most likely to benefit from education. Very few data are available on patients’ knowledge of AS, in large part because, until very recently, no instrument was available to assess this knowledge. However, a patient knowledge questionnaire was developed recently by Lubrano et al. [8], who validated it in 62 AS patients living in the United Kingdom. We used this questionnaire to assess the knowledge of patients with AS living in France and receiving management at tertiary-care hospitals. Also, we sought to identify patient and disease characteristics that were associated with the level of knowledge program about AS.

Section snippets

Study population and study design

This study was conducted in consecutive outpatients seen at six rheumatology departments in tertiary-care hospitals throughout France. In each center, one investigator included consecutive patients during a one- or two-month period. To be included, patients had to fulfill the modified New York criteria for AS [9], to be aware that they had AS, and to speak and read French fluently. At the time of the study, none of the study centers offered structured education program about AS.

Assessment of the level of knowledge of AS

The level of

Patients

Seventeen patients were excluded from the study because they did not meet the modified New York criteria for AS, although they said they had AS and completed the questionnaire. Five additional patients were excluded because missing answers in the knowledge questionnaire precluded calculation of the CIS and CAS. This left 90 patients for the study. The main characteristics of these patients and their disease are given in Table 1. Five patients had psoriasis and two inflammatory bowel disease.

Discussion

This study provides the first description of the level of knowledge in a large cohort of French AS patients. It also identified specific areas in which knowledge was poorer, as well as patient characteristics associated with a greater likelihood of poor knowledge. However, it should be stressed that these results are relevant only to patient populations similar to ours, i.e., patients with AS receiving at least part of their follow-up in tertiary-care hospitals.

The instrument used in this study

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