Informational Gaps, Needs, and Preferences of Adults With Chronic Health Conditions and Their Family Caregivers

Objectives: The purpose of this cross-sectional, qualitative study was to determine unmet educational needs, preferences, and barriers experienced by individuals with chronic illness and their caregivers. Methods: A survey containing fixed-choice selections and open-ended questions was sent to persons with cancer and other chronic diseases who had been seen within a large national private health system. Results: Between 20% and 25% of participants had difficulty obtaining health care information and/or felt overwhelmed with managing their condition. Coping, managing symptoms, and making treatment decisions were areas of need in both patients and caregivers. Preferences for receiving information were diverse. Conclusion: Existing methods of communication including secure Web sites where patients can access their medical records posed significant challenges.