Search

Purpose: Chordomas are rare malignant tumors arising from the embryological notochord that present most frequently in the lumbosacral spine, followed by the skull base, with an overall 1/1,000,000 incidence. These tumors and their treatment significantly affect quality of life (QOL) due to intricate anatomical locations and aggressive treatment regimens. Despite these challenges, there are currently no disease-specific patient-reported outcome (PRO) surveys for chordomas. We aimed to develop a tool to assess QOL in patients with skull base chordomas (sbCs)., Methods: Twenty-seven patients who underwent sbC resection were interviewed on QOL throughout their care. Grounded-theory analysis of interview transcripts generated 7 themes. We developed an initial survey with 79 items from existing general and anatomic-specific QOL assessment tools addressing these themes. Ten chordoma providers and 10 new patients completed an anonymous Qualtrics survey, rating items' relevance on a 5-point Likert scale to validate survey content. An a priori cutoff of > 3.0 was used for significant relevance. Mean relevance scores for each item were compared between providers and patients as well as between skull base respondents and 5 control patients with lumbar spine and sacral chordomas, using two-sided Mann-Whitney U-tests., Results: Seventy-four items reached the relevance threshold. These were consolidated to create the final 42-item Skull Base Chordoma Patient Reported Outcome Survey (sbCPROS). Providers significantly overvalued items related to the themes of pain (73%), sleep changes (60%), and sensory & motor symptoms (43%) relative to patients. Ten items were more relevant to skull base patients than patients with spinal tumors (p < 0.05)., Conclusion: The authors developed a novel patient-centered, disease-specific PRO instrument to assess change in QOL for sbC patients over time. sbCPROS may provide significant insight into the delivery of high quality care for patients with sbCs and guide patient-physician discussions about care decision-making., Competing Interests: Declarations. Competing interests: The authors declare no competing interests. Ethical approval: Approval was obtained from the ethics committee of Johns Hopkins University School of Medicine. The procedures used in this study adhere to the tenets of the Declaration of Helsinki. Consent to participate and consent to publish: Verbal informed consent was obtained prior to the interview and survey completions., (© 2025. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.)

Background: Type 2 diabetes affects nearly 34.2 million adults and is the seventh leading cause of death in the United States. Digital health communities have emerged as avenues to provide social support to individuals engaging in diabetes self-management (DSM). The analysis of digital peer interactions and social connections can improve our understanding of the factors underlying behavior change, which can inform the development of personalized DSM interventions., Objective: Our objective is to apply our methodology using a mixed methods approach to (1) characterize the role of context-specific social influence patterns in DSM and (2) derive interventional targets that enhance individual engagement in DSM., Methods: Using the peer messages from the American Diabetes Association support community for DSM (n=~73,000 peer interactions from 2014 to 2021), (1) a labeled set of peer interactions was generated (n=1501 for the American Diabetes Association) through manual annotation, (2) deep learning models were used to scale the qualitative codes to the entire datasets, (3) the validated model was applied to perform a retrospective analysis, and (4) social network analysis techniques were used to portray large-scale patterns and relationships among the communication dimensions (content and context) embedded in peer interactions., Results: The affiliation exposure model showed that exposure to community users through sharing interactive communication style speech acts had a positive association with the engagement of community users. Our results also suggest that pre-existing users with type 2 diabetes were more likely to stay engaged in the community when they expressed patient-reported outcomes and progress themes (communication content) using interactive communication style speech acts (communication context). It indicates the potential for targeted social network interventions in the form of structural changes based on the user's context and content exchanges with peers, which can exert social influence to modify user engagement behaviors., Conclusions: In this study, we characterize the role of social influence in DSM as observed in large-scale social media datasets. Implications for multicomponent digital interventions are discussed., (© Tavleen Singh, Kirk Roberts, Kayo Fujimoto, Jing Wang, Constance Johnson, Sahiti Myneni. Originally published in JMIR Diabetes (https://diabetes.jmir.org).)