RESUMEN
PURPOSE: The current investigation aimed to establish preliminary normative data for endoscopic swallow studies (FEES). The investigators collected data for three timing measures (time to whiteout, duration of whiteout, and total swallow time), three swallowing outcomes (safety, efficiency, and number of swallows per bolus), and one physiologic event (glottal response), for both healthy young and older adults using two liquid volumes, one pureed bolus and a solid bolus. METHODS: Blinded raters retrospectively analyzed 65 randomly selected, deidentified videos of endoscopic swallowing examinations from a pool of 163 young and older adults with typical swallowing abilities. Timing measures and analysis of airway invasion, amount of residue, number of swallows, and glottal response were obtained. RESULTS: Preliminary means and quartiles were established for healthy adults in two age groups (young and old), for time to whiteout (WO), number of swallows per bolus, glottal response, Yale Residue Rating Scale Scores, Penetration-Aspiration Scale scores, duration of WO, and total swallow duration. Differences were found between the older and younger groups. CONCLUSION: The current study represents a preliminary attempt to provide quantitative and normative values for FEES. These data represent reference values to which other bolus presentations and populations can be compared. The data represents proof of concept and merits additional investigation. IRB ID: 1756246-2: Approved 2022/06/06. CLINICAL TRIAL REGISTRATION: Study does not meet criteria. DATA REPOSITORY: https://doi.org/10.6084/m9.figshare.25800025 .
RESUMEN
BACKGROUND: Cancer survivors experience complex medical and psychosocial challenges after a cancer diagnosis, leading to unmet informational and emotional needs. There is a paucity of cancer survivorship educational resources co-created by survivors and medical professionals. OBJECTIVE: Our aim was to create an educational resource for cancer survivors, caregivers, and medical professionals that would leverage digital storytelling to address survivorship topics. PATIENT INVOLVEMENT: Our content and production team included cancer survivors, clinicians, educators, and design experts. All content was co-created by cancer survivors and medical experts. METHODS: We conducted an environmental scan of existing cancer survivorship educational resources in academic and public domains. Applying human-centered design principles, we incorporated patient perspectives through advisory board meetings and focus groups and identified a podcast as the preferred medium. We selected content and speakers, produced the podcast, and developed a corresponding website. RESULTS: Based on patient recommendations, podcast episodes address mental health, fear of cancer recurrence, relationships, parenting, relating to a new body, care transitions for adult survivors of childhood cancer, disclosing health information, and financial burden of cancer. Podcast guests were invited based on lived or learned experience in these domains. Thirteen guests (survivors, experts) and four hosts (two cancer survivors, two oncologists) co-created 15 podcast episodes. Podcast guests found the storytelling experience to be powerful and therapeutic. DISCUSSION: Digital storytelling is a scalable and accessible educational tool for communicating complex survivorship concepts that can amplify survivors' voices and increase awareness among survivors and clinicians. Co-creation of educational resources for cancer survivorship by survivors and professionals is a feasible and innovative educational strategy. PRACTICAL VALUE: A podcast created by and for cancer survivors in partnership with medical experts highlights opportunities for peer-to-peer digital storytelling to foster community among survivors and caregivers. FUNDING: Podcast production was supported by the Stanford Comprehensive Cancer Center.