TY - JOUR AU - Rosenzweig, Allison AU - Rathjens, Sydney AU - Abdilleh, Kawther AU - Ladnier, Dennis AU - Zelada-Arenas, Fatima AU - Doss, Sudheer AU - Matrisian, M. Lynn PY - 2025/5/26 TI - Understanding the Experiences of Patients With Pancreatic Cancer: Quantitative Analysis of the Pancreatic Cancer Action Network Patient Registry JO - J Particip Med SP - e65046 VL - 17 KW - pancreatic cancer KW - patient-reported outcomes KW - patient registry KW - pain KW - depression KW - cancer KW - patient outcomes KW - pancreatic KW - statistical analyses KW - survey KW - cancer patient KW - patient experience KW - registry KW - data collection KW - health status KW - well-being N2 - Background: The Pancreatic Cancer Action Network (PanCAN) established its Patient Registry to gather real-world data from patients with pancreatic cancer and their caregivers, related to their diagnosis, symptoms and symptom management, treatments, and more. Results from version 2 of the PanCAN Registry are presented here. Objective: We sought to gather and evaluate patient-reported outcomes data inputted into the PanCAN Patient Registry from December 2020 to January 2024. Statistical analyses were used to identify findings from a relatively small sample size (271 participants, as defined by people who filled out the Basics survey of the PanCAN Registry). Methods: Participation in the PanCAN Patient Registry was voluntary, and participants filled out an electronic consent form before joining the registry. Participants were identified through the PanCAN Patient Services Help Line or navigated to the registry directly via the PanCAN website. Data analysis took place via bivariate analysis using the chi-square test for categorical variables. Statistical significance was defined as a P value of <.05, with P values between .05 and .1 considered marginally significant, and P values >.1 considered insignificant. Results: Pain was reported by 186 out of the 207 (89.9%) PanCAN Patient Registry participants who filled out the pain-related questions in the General Assessment survey. We observed a marginally significant (P=.06) difference between the reporting of pain by patients aged younger than 65 years (86/92, 93.5%) and those aged 65 years or older (66/78, 84.6%). Depression was also a common condition experienced by patients with pancreatic cancer, with 64/103 (62.1%) indicating that they were experiencing or had experienced depression during the course of their illness. A trend suggested that depression was more frequently reported among the subset of patients who also reported pain (53/80, 66.3%) compared with those who did not report pain (5/13, 38.5%; P=.07). Conclusions: The use of patient-reported outcomes and real-world data for patients with pancreatic cancer has the potential to have direct impact on clinical practice. Through a relatively small sampling of patients, trends were identified that suggest a higher reporting of pain amongst patients in a younger age group as well as concurrence of pain and depression. These findings underscore the importance of a multidisciplinary team of health care professionals addressing patients? needs beyond the treatment of their cancer. UR - https://jopm.jmir.org/2025/1/e65046 UR - http://dx.doi.org/10.2196/65046 ID - info:doi/10.2196/65046 ER - TY - JOUR AU - Davidson, Anne Cara AU - Booth, Richard AU - Jackson, Teresa Kimberley AU - Mantler, Tara PY - 2024/2/23 TI - Toxic Relationships Described by People With Breast Cancer on Reddit: Topic Modeling Study JO - JMIR Cancer SP - e48860 VL - 10 KW - breast cancer KW - intimate partner violence KW - meaning extraction method KW - Reddit KW - sentiment analysis KW - social media KW - social support KW - toxic relationships KW - topic modelling N2 - Background: Social support is essential to promoting optimal health outcomes for women with breast cancer. However, an estimated 12% of women with breast cancer simultaneously experience intimate partner violence (IPV; physical, psychological, or sexual abuse by an intimate partner). Women who experience IPV during breast cancer may lack traditional social support, and thus seek out alternative sources of support. Online community forums, such as Reddit, can provide accessible social connections within breast cancer?specific communities. However, it is largely unknown how women with breast cancer use Reddit to describe and seek support for experiences of IPV. Objective: This study aims to explore how patients with breast cancer describe toxic relationships with their partners and immediate family members on Reddit. Methods: This exploratory, cross-sectional, topic-modeling study analyzed textual data from 96 users in the r/breastcancer subreddit in February 2023. The meaning extraction method, inclusive of principal component analysis, was used to identify underlying components. Components were subjected to sentiment analysis and summative content analysis with emergent categorical development to articulate themes. Results: Seven themes emerged related to toxic relationships: (1) contextualizing storytelling with lymph nodes, (2) toxic behavior and venting emotions, (3) abandonment and abuse following diagnosis, (4) toxic relationships and social-related fears, (5) inner strength and navigating breast cancer over time, (6) assessing social relationships and interactions, and (7) community advice and support. Toxic relationships were commonly characterized by isolation, abandonment, and emotional abuse, which had profound emotional consequences for patients. Reddit facilitated anonymous venting about toxic relationships that helped patients cope with intense feelings and stress. Exchanging advice and support about navigating toxic relationships during breast cancer were core functions of the r/breastcancer community. Conclusions: Findings emphasized the value of Reddit as a source of social support for patients with breast cancer experiencing toxic relationships. Clinicians who understand that many patients with breast cancer experience toxic relationships and considerable psychological sequelae are better prepared to support their patients? holistic well-being. Further investigation of Reddit as a possible resource for advice, information, and support has the potential to help inform clinical practice and subsequently, patient health outcomes. UR - https://cancer.jmir.org/2024/1/e48860 UR - http://dx.doi.org/10.2196/48860 UR - http://www.ncbi.nlm.nih.gov/pubmed/38393769 ID - info:doi/10.2196/48860 ER - TY - JOUR AU - Renner, Simon AU - Loussikian, Paul AU - Foulquié, Pierre AU - Marrel, Alexia AU - Barbier, Valentin AU - Mebarki, Adel AU - Schück, Stéphane AU - Bharmal, Murtuza PY - 2023/3/27 TI - Patient and Caregiver Perceptions of Advanced Bladder Cancer Systemic Treatments: Infodemiology Study Based on Social Media Data JO - JMIR Cancer SP - e45011 VL - 9 KW - bladder cancer KW - social media KW - patient KW - caregiver KW - chemotherapy KW - immunotherapy KW - qualitative research KW - cancer treatment KW - first-line therapy KW - patient support KW - adverse event KW - peer support KW - cancer KW - oncology KW - perception KW - pharmacotherapy KW - opinion KW - attitude N2 - Background: In 2022, it was estimated that more than 80,000 new cases of bladder cancer (BC) were diagnosed in the United States, 12% of which were locally advanced or metastatic BC (advanced BC). These forms of cancer are aggressive and have a poor prognosis, with a 5-year survival rate of 7.7% for metastatic BC. Despite recent therapeutic advances for advanced BC, little is known about patient and caregiver perceptions of different systemic treatments. To further explore this topic, social media can be used to collect the perceptions of patients and caregivers when they discuss their experiences on forums and online communities. Objective: The aim of this study was to assess patient and caregiver perceptions of chemotherapy and immunotherapy for treating advanced BC from social media?posted data. Methods: Public posts on social media in the United States between January 2015 and April 2021 from patients with advanced BC and their caregivers were collected. The posts included in this analysis were geolocalized to the United States; collected from publicly available domains and sites, including social media sites such as Twitter and forums such as patient association forums; and were written in English. Posts mentioning any line of chemotherapy or immunotherapy were qualitatively analyzed by two researchers to classify perceptions of treatments (positive, negative, mixed, or without perception). Results: A total of 80 posts by 69 patients and 142 posts by 127 caregivers mentioning chemotherapy, and 42 posts by 31 patients and 35 posts by 32 caregivers mentioning immunotherapy were included for analysis. These posts were retrieved from 39 public social media sites. Among patients with advanced BC and their caregivers, treatment perceptions of chemotherapy were more negative (36%) than positive (7%). Most of the patients? posts (71%) mentioned chemotherapy factually without expressing a perception of the treatment. The caregivers? perceptions of treatment were negative in 44%, mixed in 8%, and positive in 7% of posts. In combined patient and caregiver posts, immunotherapy was perceived positively in 47% of posts and negatively in 22% of posts. Caregivers also posted more negative perceptions (37%) of immunotherapy than patients (9%). Negative perceptions of both chemotherapy and immunotherapy were mainly due to side effects and perceived lack of effectiveness. Conclusions: Despite chemotherapy being standard first-line therapy for advanced BC, negative perceptions were identified on social media, particularly among caregivers. Addressing these negative perceptions of treatment may improve treatment adoption. Strengthening support for patients receiving chemotherapy and their caregivers to help them manage side effects and understand the role of chemotherapy in the treatment of advanced BC would potentially enable a more positive experience. UR - https://cancer.jmir.org/2023/1/e45011 UR - http://dx.doi.org/10.2196/45011 UR - http://www.ncbi.nlm.nih.gov/pubmed/36972135 ID - info:doi/10.2196/45011 ER - TY - JOUR AU - Wassersug, Richard PY - 2023/2/6 TI - How I Built My Personal, Patient-Centered Health Care Team: Instead of Doctors, I Started With Students JO - JMIR Cancer SP - e44693 VL - 9 KW - prostate cancer KW - mentorship KW - medical education KW - students KW - patient with cancer KW - urologist KW - support KW - researchers KW - patient-centered KW - colleagues KW - health care training UR - https://cancer.jmir.org/2023/1/e44693 UR - http://dx.doi.org/10.2196/44693 UR - http://www.ncbi.nlm.nih.gov/pubmed/36745488 ID - info:doi/10.2196/44693 ER -