Young Adult Experience in an Outpatient Interdisciplinary Palliative Care Cancer Clinic.

PURPOSE: Young adults (YAs; defined as 18-39 years of age) with advanced cancer are a group for whom standardized age-appropriate palliative care has not been established. The purpose of this study was to explore the YA experience and perceptions of palliative care in an outpatient interdisciplinary palliative care clinic for this population. PATIENTS AND METHODS: Using an interpretive descriptive design, semistructured interviews were conducted with 12 YAs with advanced cancer who were being seen jointly by a palliative care physician and psychiatrist in an ambulatory palliative care clinic. Interviews explored participants' understanding and experiences of receiving palliative care. Six family members were also interviewed to build on the YA experience. Data collection and analysis occurred concurrently, drawing on the constructivist grounded theory method to analyze the data. RESULTS: Participants described being referred to and seen in the interdisciplinary palliative care clinic as a conflicting and at times difficult experience because of the feeling of being categorized as palliative as YAs. Even so, there were key aspects associated with the specific palliative care approach that allowed YAs to cope with this new label, leading to a beneficial experience, specifically: provided YAs with time and space to explore the experience of having cancer at a younger age, created repeat opportunities to talk openly with people who "got it," and highlighted the importance of including family support in the care of YAs. CONCLUSION: YAs who were referred to the interdisciplinary palliative care clinic struggled with the category of palliative care but also found the care they received beneficial. Findings provide an approach to palliative care tailored to YAs with advanced cancer.

Evaluation of an Educational Whiteboard Video to Introduce Fertility Preservation to Female Adolescents and Young Adults With Cancer.

PURPOSE: Fertility is an important issue for adolescents and young adults with cancer facing potential infertility. Egg cryopreservation options exist, but information is sometimes overwhelming. We evaluated a fertility preservation educational video and assessed patient and family knowledge and impressions at pre- and post-video timepoints. METHODS: We developed a whiteboard video to explain egg cryopreservation to patients and families. The video was evaluated on the basis of patient education best practices (readability, understandability, actionability). Participants were recruited using convenience sampling in oncology clinics. They completed questionnaires before and after watching to assess knowledge and interest. Inclusion criteria were patients age 13-39 years and minimum 1 month from diagnosis. Descriptive statistics, correlation analyses, and mean comparisons were conducted. RESULTS: The video script read at a grade 8 reading level. Average understandability and actionability scores were below the acceptable standard. We recruited 108 patients (mean age, 27 years) and 39 caregivers/partners. Patients' knowledge about fertility preservation increased after viewing the video. Interest was high before and after, and satisfaction was high for both patients and caregivers. Participants appreciated information on process, procedure, and delivery but desired more information on logistics, including cost. CONCLUSION: A targeted patient education video about fertility preservation options can build knowledge and encourage discussions about infertility. The video can be used as a model for videos on related topics to provide accurate information in a youth-friendly medium; however, following patient education best practices for readability, understandability, and actionability may increase video effectiveness. Future research should assess how audiovisual patient education material affects patient behavior.