1. Evidence-based Checkup for Patient Education Web Sites Suzanne Austin Boren, MHA Center for Health Care Quality University of Missouri BorenS@health.missouri.edu BorenS@health.missouri.edu

2. Objective To assist in the development and selection of better patient education web sites.

3. Consequences of Not Having Education Knowledge Deficit Incompetent Actions Deteriorating Health Economic Impact

4. Method: Checklist Development Conducted systematic searches in MEDLINE, HealthSTAR, and CINAHL for patient education randomized controlled trials. Applied four eligibility criteria applied: –(i) targeted clinical area –(ii) randomised clinical trial –(iii) patient focused educational intervention tested versus control –(iv) measurement of the outcome of care. Abstracted the substantiated educational content items and achieved improvement into checklists.

5. Method: Academic Website Evaluation European and American web sites were identified based on the following eligibility criteria: –(i) academic health sciences center or a health web site frequently linked to by an academic health sciences center –(ii) comprehensive patient information on the web –(iii) focus on a targeted clinical areas. Compared the Internet information with the evidence- based checklists.

6. Educating Patients and Providers about Chronic Care Needs to Be Based on Scientifically Sound EvidenceDiabetes 88 RCTs 11,760 patients 25 educational content itemsAsthma 70 RCTs 10,857 patients 23 educational content items Congestive Heart Failure 12 RCTs 3,353 patients 15 educational content items Results: One hundred and seventy studies involving the education of 25,970 patients were analyzed. The results document that far more clinical evidence is available on patient education beyond confirmation that it is generally useful. Diabetes education programs should include the topics of knowledge and prevention, glucose level, and diet and activity. Asthma education programs should contain the topics of knowledge and management, activity, medication, monitoring, and communication and access. Congestive heart failure education programs should incorporate the topics of knowledge and management, social interaction and support, and fluids.

7. There Is a Surprising Lack of Several, Well-Substantiated Items in Prestigious Patient Education Web Sites DIABETES EDUCATION: emergencies, goal setting, self-motivation, social support and activities, behavior change CONGESTIVE HEART FAILURE EDUCATION: social interaction and support, ankle circumference, self- monitoring, and compliance ASTHMA EDUCATION: pregnancy, breathing control skills, physical conditioning, asthma diary, communication Frequently omitted content items appearing in <20% of the web sites include: Content items missing: Diabetes: 59.7% CHF: 44.8% Asthma: 65.5% 46 web sites: 18 diabetes, 14 congestive heart failure, 14 asthma

8. Evidence-based Diabetes Content Knowledge and Prevention - Understanding Diabetes (94%) - Self-Care & Monitoring (31%) - Prevention & Management of Complications (53%) - Risk Factors (69%) - Emergencies (11%) - Foot & Skin Hygiene (58%) - Regular Eye Exam (53%) - Smoking Cessation (36%) Diet and Activity - Diet & Nutrition (89%) - Food Purchasing & Meal Planning (44%) - Exercise & Physical Activity (78%) - Weight Reduction & Maintenance (28%) - Alcohol (39%) Glucose Level - Blood Glucose Monitoring & Recording (64%) - Urine Testing (28%) - Insulin Adjustment & Administration (61%) - Medication (61%) Management and Coping - Goal Setting (17%) - Problem Solving (22%) - Self-Motivation (8%) - Social Support (11%) - Stress Management (28%) - Social Activities (6%) - Coping (19%) - Behavior Change (0%)

9. Evidence-based Congestive Heart Failure Content Knowledge and Management - Diagnosis and prognosis (82%) - Pathophysiology (89%) - Aims of treatment (68%) - Management and recognition of worsening symptoms (82%) - Medication review and discussion of side effects (79%) - Access to the general practitioner (46%) - Follow-up (32%) Diet and Activity - Dietary assessment and instruction (82%) - Physical activity and exercise (79%) Fluids - Sodium restriction (57%) - Fluid balance (39%) - Daily measurement of weight (61%) - Ankle circumference (7%) - Self-monitoring and compliance (18%) Social Interaction and Support Social Interaction and Support (7%)

10. Evidence-based Asthma Content Knowledge and Management - Explanation of mechanisms of asthma (asthma epidemiology and asthma physiology) (93%) - Maintaining healthy behavior and environment (71%) - Definition and avoidance of asthma triggers (89%) - Emotional/psychological effects of asthma (21%) - Improving school performance (14%) - Self management plan (18%) - Managing an asthma attack, how to identify early signals, how to act at an early stage when the first symptoms appear (50%) - Smoking cessation (25%) - Asthma and pregnancy (7%) Medication - Inhaler instruction and technique (64%) - Functions and taking of medications (89%) - Side effects (64%) Activity - Establishing guidelines for the child's physical activities (0%) - Self-control techniques and relaxation (21%) - Breathing control skills (7%) - Physical conditioning (14%) - Physiotherapy (0%) - Physical activities (29%) Monitoring - Provided with a peak flow meter and education on how to use it (29%) - Provided with an asthma diary and instruction on its use (14%) Communication and Access - Communicating with the physician (36%) - Communicating with others about asthma (14%) - How to access medical care appropriately (21%)

11. Conclusions Educating patients and providers about good chronic care needs to be based on scientifically sound evidence. With the rapidly accumulating results of clinical trials, Internet-based patient education programs could be redefined based on evidence linking specific content items to better outcomes. While many academic health centers offer valuable information, there is a surprising lack of several, well- substantiated items in prestigious patient education web sites.

12. Funding Support This work was supported in part by grants from the National Library of Medicine (LM05545) and the Information Society General Directorate of the European Commission (project CHS, IST 13352).