2026-03-26
Suheyla Ocak, Martin Yi, Agata Wolochacz, Ida Mehrdadi, Ahmed Naqvi, Sumit Gupta, Lillian Sung, Adam P Yan
Background: Hemophagocytic lymphohistiocytosis (HLH) is a life-threatening hyperinflammatory syndrome that requires rapid diagnosis and intervention. However, identifying these patients is difficult because the HLH-2004 diagnostic criteria are complex and not always captured systematically in electronic health records (EHRs). Furthermore, it is unclear how clinicians use these criteria to diagnose HLH and make treatment decisions. There is a critical need for validated computable phenotypes to accurately identify patients and study treatment-related outcomes in HLH. Objective: The aim of this study is to compare different approaches to using the EHR to build computable phenotypes of patients with HLH and to evaluate characteristics and outcomes of patients meeting the HLH-2004 diagnostic criteria who received HLH-directed therapies compared to those who did not. Methods: Three approaches to computable phenotype development in the EHR were taken by identifying patients (1) with an HLH-specific () code, (2) with an HLH-specific treatment plan, and (3) meeting the HLH-2004 clinical criteria for diagnosis of HLH. Among patients who met the HLH-2004 criteria, we evaluated the characteristics and outcomes of patients who received HLH-directed therapies compared to those who did not. HLH treatment was defined as either any chemotherapy or HLH-specific therapy (dexamethasone, methylprednisolone, anakinra, ruxolitinib, cyclosporine, etoposide, or emapalumab). Results: We identified 388 patients with possible HLH across the three cohorts. An HLH diagnosis (n=220) and meeting 5 or more clinical criteria (n=245) were much more common than a HLH treatment plan (n=42). Among the patients meeting HLH-2004 clinical criteria, 193 (79%) received HLH-directed therapy. There was no difference in any specific HLH criteria between those who did and did not receive HLH-directed therapy. In-hospital mortality was very high among both groups and was 15% among those who received HLH-directed therapy and 13.5% among those who did not receive HLH-directed therapy. Among 1325 patients with an elevated ferritin and fever, only 252 (19%) met >5 clinical criteria. Conclusions: Constructing HLH cohorts from EHR data is challenging, with diagnosis codes, treatment plans, and clinical criteria each capturing distinct but overlapping populations.
2026-03-24
Matteo Basilio Suter, Rosanna D'Antona, Manuelita Mazza, Enrica Francavilla, Alice Messi, Abhinav Maurya, Shiva Padhi, Diletta Valsecchi
Background: Published evidence on patient experiences, perceptions, and challenges related to early breast cancer (eBC) in Italy is limited. Understanding these aspects is critical for improving diagnosis, treatment outcomes, and quality of life (QoL). Objective: This study used social media listening (SML) to explore the patient journey, treatment perceptions, QoL, and unmet needs of patients with eBC, caregivers, and health care professionals (HCPs) in Italy. Methods: This retrospective noninterventional SML study analyzed publicly available posts from December 2021 to November 2023 using breast cancer–related keywords in English and Italian through Sprinklr, a web-based aggregator tool. Posts sourced from social media platforms, such as X (formerly known as Twitter), blogs, forums, Facebook, Instagram, and YouTube, were filtered by geographic location to include only users in Italy. Posts were filtered using natural language processing (NLP) for relevance and duplicates, followed by manual review and stakeholder identification (patients, caregivers, and HCPs). Key themes of discussion were identified through thematic analysis of posts across the stages of the patient journey (symptoms, diagnosis, treatment, etc). Ethical guidelines were followed by using anonymized, publicly available data. Descriptive statistics were used to analyze the data, and posts with missing data were excluded. Consequently, denominators varied across analyses and were adjusted based on data availability for specific variables. Results: Of the 20,008 posts initially extracted, 1580 posts were retained following NLP filtering, and 530 posts were included after manual screening. The majority (493/518, 95%) of the posts were sharing information about diagnosis and treatment journeys, emotional challenges, QoL concerns, and symptoms (eg, lumps, breast pain), while 27% (141/518) of the posts sought information on diagnostic dilemmas, treatment options, and second opinions. Patients contributed 60% (318/530) of the posts, and caregivers contributed 21% (111/530) of the posts, with over half (57/107, 53%) discussing their mothers’ diagnosis and treatment struggles. HCPs contributed 16% (85/530) of the posts, primarily sharing clinical trial updates, drug approvals, and disease awareness efforts. A total of 88 posts included discussions on QoL, and eBC significantly impacted patients’ emotional, physical, functional, and social well-being. Discussions revealed key unmet needs, including limited awareness of adjuvant therapy options, lack of peer support groups, suboptimal patient-HCP communication, and insufficient access to specialty care facilities. Conclusions: This study highlights gaps in eBC management related to patient education, HCP communication, and access to specialty care and describes an associated worsening of QoL for patients as reflected in social media posts. Within the limitations of an observational SML design, increasing patient and caregiver awareness of available adjuvant therapies to improve adherence and reduce recurrence risk, alongside expanding access to regional breast cancer centers, may help optimize patient experiences and outcomes. Further research using complementary data sources is needed to confirm and extend these findings.
2026-03-19
Theres Fey, Nicole Thurner, Ulrike Haidn, Friederike Mumm, Birgit Haberland, Rachel Wuerstlein, Sebastian Theurich, Georg Wolfrum, Marie-Louise Troidl, Susan Müller, Claudia Bausewein, Timo Schinköthe, Volker Heinemann, Nicole Erickson
Background: Electronic patient-reported outcome tools have the potential to enhance supportive care in oncology and support the timely and accurate identification of patients’ needs. Objective: This study aimed to develop, implement, and evaluate a user-friendly, web-based digital screening tool at a German Comprehensive Cancer Center that systematically and efficiently assesses the supportive care needs of patients with cancer and enables direct referral to appropriate supportive services through seamless integration with the hospital information system. Methods: An interdisciplinary team collaborated with the IT department and the company CANKADO, an electronic patient-reported outcome provider, to create a 14-item digital questionnaire. The tool incorporated validated instruments, such as the Distress Thermometer, the Nutrition Risk Screening, and a short form of the Integrated Palliative Care Outcome Scale, aligned with German Cancer Society certification criteria. Patients accessed the questionnaire via QR codes. Screening results were automatically transferred to the hospital information system, where supportive care requests (SCRs) were generated automatically if indicated. Results: Between June 2024 and May 2025, a total of 8855 QR codes were generated. Of these, 4909 questionnaires were complete and valid for analysis. This information produced 3324 SCRs. Digital screenings resulted in an SCR in 22.4% of cases for psycho-oncology, 18.7% for nutrition, and 27.6% for palliative care. The digital screening maintained or slightly improved screening rates compared to prior methods. Conclusions: The implementation of a digital supportive care screening was feasible and effective within the Comprehensive Cancer Center setting. Future efforts should focus on overcoming barriers for patients with limited digital access or capabilities to ensure the delivery of equitable supportive care.