The educational needs of people with systemic sclerosis: a cross-sectional study using the Dutch version of the Educational Needs Assessment Tool (D-ENAT)

• Published in: Rheumatology international Vol. 36; no. 2; pp. 289 - 294
• Main Authors: Schouffoer, Anne, Ndosi, Mwidimi E., Vliet Vlieland, Thea P. M., Meesters, Jorit J. L.
• Format: Journal Article
• Language: English
• Published: Berlin/Heidelberg Springer Berlin Heidelberg 01.02.2016; Springer Nature B.V
• Subjects: Adaptation, Psychological; Adult; Aged; Cost of Illness; Cross-Sectional Studies; Emotions; Female; Health Knowledge, Attitudes, Practice; Health Services Needs and Demand; Health Status; Humans; Male; Medicine; Medicine & Public Health; Middle Aged; Needs Assessment; Netherlands; Patient Education as Topic; Quality of Life; Rheumatology; Scleroderma, Systemic - diagnosis; Scleroderma, Systemic - physiopathology; Scleroderma, Systemic - psychology; Scleroderma, Systemic - therapy; Self Care; Short Communication - Education; Surveys and Questionnaires; Patient education; Health knowledge; Outcomes research; Information; Needs assessment; Systemic sclerosis
• ISSN: 0172-8172; 1437-160X
• DOI: 10.1007/s00296-015-3352-8

The Dutch Educational Needs Assessment Tool (D-ENAT) systematically assesses educational needs of patients with rheumatic diseases. The present study aims to describe the educational needs of Dutch patients with systemic sclerosis (SSc). The D-ENAT was sent to 155 SSc patients registered at the outpatient clinic of a university hospital. The D-ENAT consists of 39 items in seven domains. “Each domain has different number of items therefore we normalized each domain score: (domain score/maximum) × 100) and expressed in percentage to enable comparisons between domains.” A total D-ENAT score (0–156) is calculated by summing all 39 items. In addition, age, disease duration, gender, educational level, present information need (yes/no) and information need (1–4; wanting to know nothing–everything) were recorded. Univariate regression analysis was used to examine factors associated with the D-ENAT scores. The response rate was 103 out of 155 (66 %). The mean % of educational needs scores (0–100 %; lowest–highest) were 49 % for “D-ENAT total score,” 46 % for “Managing pain,” 41 % for “Movement,” 43 % for “Feelings,” 59 % for “Disease process,” 44 % for “Treatments from health professionals,” 61 % for “Self-help measures” and 51 % for “Support systems.” No associations between the D-ENAT total score and age, disease duration, gender and educational level were found. The D-ENAT demonstrated its ability to identify educational needs of Dutch SSc patients. SSc patients demonstrated substantial educational needs, especially in the domains: “Disease process” and “Self-help measures.” The validity and practical applicability of the D-ENAT to make an inventory of SSc patients’ educational needs require further investigation.