title: The educational needs of people with systemic sclerosis: a cross-sectional study using the Dutch version of the Educational Needs Assessment Tool (D-ENAT).
abstract: 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.
authors: Department of Rheumatology, Leiden University Medical Center, Leiden, The Netherlands.|Department of Rheumatology, Haga Hospital, The Hague, The Netherlands.
authors: Anne
authors: A
authors: Schouffoer
authors: Academic and Clinical Unit for Musculoskeletal Nursing, Leeds Institute of Rheumatic and Musculoskeletal Medicine, University of Leeds, Leeds, UK.|School of Healthcare, University of Leeds, Leeds, UK.
authors: Mwidimi E
authors: ME
authors: Ndosi
authors: Department of Orthopaedics, Rehabilitation and Physical Therapy, Leiden University Medical Center, PO Box 9600, 2300 RC, Leiden, The Netherlands.
authors: Thea P M
authors: TP
authors: Vliet Vlieland
authors: Department of Rheumatology, Leiden University Medical Center, Leiden, The Netherlands. J.J.L.Meesters@lumc.nl.|Department of Orthopaedics, Rehabilitation and Physical Therapy, Leiden University Medical Center, PO Box 9600, 2300 RC, Leiden, The Netherlands. J.J.L.Meesters@lumc.nl.
authors: Jorit J L
authors: JJ
authors: Meesters
mesh_terms: D000223:Adaptation, Psychological; D000328:Adult; D000368:Aged; D017281:Cost of Illness; D003430:Cross-Sectional Studies; D004644:Emotions; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006301:Health Services Needs and Demand; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D009426:Netherlands; D010353:Patient Education as Topic; D011788:Quality of Life; D012595:Scleroderma, Systemic / Q000175:diagnosis / Q000503:physiopathology / Q000523:psychology* / Q000628:therapy; D012648:Self Care; D011795:Surveys and Questionnaires
keywords: Health knowledge; Information; Needs assessment; Outcomes research; Patient education; Systemic sclerosis