부산대학교 도서관

Partnering with patients to design education materials may enhance effectiveness and usability. and address health literacy challenges. Patients and caregivers touched by cancer are ideally positioned to partner with oncology nurses and other stakeholders to design materials which meet the needs of and improve quality of life in newly diagnosed patients. Miami Cancer Institute (MCI) partnered with patients, caregivers and key stakeholders to redesign our New Patient Folders. This participatory design approach ensured patient education materials were informative, engaging and effective for newly diagnosed cancer patients. In 2018, focus groups planned revised contents and design of two New Patient Folders (Adult & Pediatric versions). English- and Spanish-speaking patients and family members worked alongside clinical teams, Marketing and leaders throughout the design process to determine key content, images and overall design. In 2019, first editions were launched in October. From 2020-21, digital versions were launched to support telehealth patients. Patient, caregiver and staff feedback was incorporated to further refine 2nd editions. Newly diagnosed adult and pediatric cancer patients (n = 33) were surveyed to evaluate perceptions of the folders. Results demonstrated 91% of English-speaking adults (n=22), 100% of Spanish-speaking adults (n=11), and 100% of pediatric patients felt the folder (1) provided helpful information about resources and services; (2) described what to expect during treatment; (3) supported organization and planning and (4) addressed questions, concerns and approaches to self-management. In 2020, the adult and pediatric folders received national recognition through 8 competitive award programs. The folders have since undergone revisions to address feedback including (1) reduced size, (2) inclusion of various genders and ethnicities and (3) representation of all cancer diagnoses. Participatory design should include patients, caregivers and oncology nurses when planning new patient teaching materials. Oncology nurses may use new patient folders to introduce services, set expectations and provide teaching to improve quality of life in newly diagnosed cancer patients. Cancer patients diagnosed during the pandemic experience increased depression, anxiety and uncertainty and often receive telehealth vs. onsite services. Web-based patient education materials have proven effective and engaging teaching tools. MCI's dynamic, digital folders increased access and convenience for our patients. [ABSTRACT FROM AUTHOR]