Essential Topics for Hepatitis Prevention Educational Materials: What Patients, Providers and Experts Recommend DOS PREGUNTAS Lisa K Gilbert, PhD, Kelli E Scanlon, Jane D Bulger MS American Social Health Association … Dedicated to Improving the Health of Individuals, Families and Communities With a Focus on Preventing Sexually Transmitted Diseases and Their Harmful Consequences. CDC Cooperative Agreement # U50/CCU418796

Problem Statement 2001 study conducted because: patient and provider informational needs had not been assessed awareness of hepatitis A, B and C prevention was lacking educational material evaluation was limited Study conducted in 2001 surveyed experts only – needed patient and provider representation also DOS PREGUNTAS

Research Questions What are the essential core concepts for patient and provider educational materials? What are the similarities and differences between expert, provider and patient recommendations? Which patient educational materials contained the most core concepts? DOS PREGUNTAS

Data Collection: Samples and Rounds From Experts From Providers From Patients Round #1 For HCPs For Patients For HCPs For Patients For Patients From Experts From Providers From Public Round #2 For HCPs For Patients For HCPs For Patients Comprehensive Core Concepts: For HCPs For Patients

Methods – Experts Round One – Delphi technique (n=11) Mailed survey asked experts to brainstorm topics for patients and for providers Concepts summarized, content analyzed and woven into Round Two survey Round Two – Delphi technique (n=12) Mailed survey asked experts to rank order Round One topics for hepatitis A, B, C for patients and for providers Scores calculated and means established the cutoff for inclusion as core concepts

Methods – Providers Round One – Delphi technique (n=11) E-mail survey asked providers to brainstorm topics for patients and for providers Concepts summarized and content analyzed Concepts for patients woven into Web-based survey Round Two – Delphi technique (n=14) E-mail survey asked providers to rank order Round One topics for providers re: hepatitis A, B, C Scores calculated and means established the cutoff for inclusion as core concepts

Methods – Patients/General Public Round One Central Intercept Interview (n=30) Patients recruited and asked what patients need to know to prevent hepatitis Concepts summarized and content analyzed Concepts woven into Web-based survey Round Two Web-based survey (n=158) Visitors to the ASHA Web site (www.ashastd.org) invited to rank-order concepts from Round One Scores calculated and means established the cutoff for inclusion as core concepts

Methods – Comprehensive Core Concepts Round Two data from three samples were stratified into four groups; concepts for patients and for providers (A, B & C) Core concepts were standardized into questions to promote message tailoring for specific audiences and to remain current Scales from all instruments were standardized and weighted Means established the cutoff for inclusion as comprehensive core concepts DOS PREGUNTAS

Hepatitis A Concepts for Providers Who should be vaccinated for hepatitis A? How is hepatitis A treated/clinically managed? Why is hepatitis A a problem? How is hepatitis A transmitted? How effective is the hepatitis A vaccine? How can a primary infection be prevented?

Hepatitis A Concepts for Providers (cont.) What are the rates of incidence, prevalence, mortality and morbidity? Who is at highest risk of hepatitis A infection? How is hepatitis A diagnosed? What are the symptoms of hepatitis A? What are the potential sequelae? Can it be asymptomatic?

Hepatitis B Concepts for Providers Why is hepatitis B a problem? How is hepatitis B diagnosed? How is hepatitis B transmitted? How can a primary infection be prevented? What are the rates of progression to chronic disease, hepatic failure and hepatoma? How effective is the hepatitis B vaccine?

Hepatitis B Concepts for Providers (cont.) 7. Who is at highest risk of hepatitis B infection? What are the rates of incidence, prevalence, mortality and morbidity? How is hepatitis B treated or clinically managed? How effective are the treatments? What are the potential sequelae? Who should be vaccinated?

Hepatitis C Concepts for Providers What are the rates of incidence, prevalence, mortality and morbidity? Why is hepatitis C a problem? Who is at highest risk of hepatitis C infection? What are the rates of progression to chronic disease, hepatitic failure and hepatoma? How is hepatitis C transmitted? How is hepatitis C treated or clinically managed?

Hepatitis C Concepts for Providers (cont.) What behaviors are risky? How is hepatitis C diagnosed? How effective are the treatments? What are the potential sequelae? How can a primary infection be prevented? What are the symptoms of hepatitis C?

Hepatitis A, B, C for Patients How do you get hepatitis? What are the symptoms of hepatitis? Is there a cure for hepatitis? How do you prevent getting hepatitis? What can happen to you if you get hepatitis? What causes hepatitis? Which types of hepatitis are sexually transmitted? What are the options for treatment?

Hepatitis A, B, C for Patients (cont.) 9. What should I do after being exposed to or getting hepatitis? Who is at greatest risk of getting hepatitis? Can you die from hepatitis? How common is hepatitis infection? What is the difference between hepatitis A, B & C? What can you tell me about vaccines? How, when and where do you get tested for hepatitis? Can a pregnant woman give hepatitis to her baby?

Expert/patient Divergence Concepts that patients recommended that experts did not: Is there a cure? What causes hepatitis? Can you die from hepatitis? What are the options for treatment? What are the symptoms of hepatitis?

Expert/provider Divergence Concepts that experts recommended but providers did not: What are the potential sequelae? Concepts that providers recommended but experts did not: What behaviors are risky? What are the symptoms of hepatitis?

Methods -- Materials Scoring 304 current materials for patients were scored Scoring: Concepts absent scored “0” Concepts mentioned scored “1” Concepts explained scored “2” Scores were tallied for each educational material

Results -- Materials Scoring Overall scores ranged from 0 to 45 Top three scoring educational materials: “The ABCs of Viral Hepatitis” American College Health Association (1999) “The Hepatitis Information You Need to Know” American Liver Foundation (2000) “About Viral Hepatitis” Channing Bete (n/a)

Implications & Recommendations Content needs and concepts vary by population Providers need to know what patients want to know (in addition to what providers think they need to know) re: hepatitis prevention because patients may not always know what to ask Additional factors (e.g. reading level, audience appropriateness, and comprehension) need to be evaluated