Oral Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2019

A comprehensive approach to high quality patient education materials: The Beyond Five experience. (#96)

Joe Jabbour 1 , Haryana Dhillon 2 , Heather Shepherd 2 , Puma Sundaresan 3 , Chris Milross 4 , Jonathan Clark 5
  1. The University of Sydney, Camperdown, NSW, Australia
  2. Psycho-Oncology Cooperative Research Group (POCOG), The University of Sydney, Camperdown, NSW, Australia
  3. Crown Princess Mary Cancer Centre, Westmead Hospital, Westmead, NSW, Australia
  4. Department of Radiation Oncology and Medical Services, Chris O’Brien Lifehouse, Camperdown, NSW, Australia
  5. Sydney Head and Neck Cancer Institute, Chris O’Brien Lifehouse, Camperdown, NSW, Australia

Background: Information available for patient use is complex, peppered with medical jargon, and requires a high reading ability to understand.

 

Aim: Our aim is to describe a comprehensive, methodological approach to developing patient-centred education materials using the Beyond Five website as an exemplar.

 

Methods: The following stepped approach was taken in developing a comprehensive information site for head and neck cancer (HNC) patients:

  1. Identification of existing information sources
  2. Gap analysis to determine unmet information needs of patients and Health care providers (HCP)
  3. Development of content which involved adaption of existing materials and new materials to address gaps
  4. Content expert review of material
  5. Health literacy expert review of material
  6. Website interface development and testing with experts and patient advocates
  7. Iterative revisions to content, user-interface, and information gaps
  8. Usability testing of specific disease information by patients
  9. Recommendations for revision

 

Results: 597 HNC patients and 112 HCP were surveyed demonstrating need for information in coping with psychological distress, sexual health and availability of support groups. Development of content for 10 HNCs was completed with an expert panel including clinicians and health literacy experts. Information about prevention, diagnosis, treatment, side effects and recovery into survivorship was incorporated. Development testing identified the need to layer information and provide it in downloadable, printable factsheet formats. Website usability analysis in 18 patients demonstrated a preference for video content, particularly patient stories. Most patients found the website informative and could navigate to complete specific tasks, however simplification of the user interface and navigation were required. All patients would revisit the website for accurate information about their HNC.

 

Conclusion: A structured comprehensive approach to developing patient education materials delivers improved information support for patients, caregivers, and HCP. Maintaining information and ensuring it is evidence-based remains an ongoing challenge