121 results on '"Bender JL"'
Search Results
2. PCN144 - Expanded Genomic Testing for Pediatric Cancers is Clinically Impactful But Reimbursement Lags Behind
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Oberg, JA, Sireci, AN, Hsiao, SJ, Pendrick, D, Turk, AT, Chung, WK, Sulis, ML, Kung, AL, Mansukhani, MM, and Glade Bender, JL
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- 2018
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3. Can pain be managed through the Internet? A systematic review of randomized controlled trials.
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Bender JL, Radhakrishnan A, Diorio C, Englesakis M, Jadad AR, Bender, Jacqueline L, Radhakrishnan, Arun, Diorio, Caroline, Englesakis, Marina, and Jadad, Alejandro R
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Given the increasing penetration and health care related use of the Internet, we examined the evidence on the impact of Internet-based interventions on pain. A search of Medline, CINAHL, PsycINFO, and the Cochrane Library was conducted for literature published from 1990 to 2010 describing randomized controlled trials that assessed the effects of Internet-based interventions on patients with pain of any kind. Of 6724 citations, 17 articles were included. The studies evaluated the effects of interventions that provided cognitive and behavioral therapy, moderated peer support programs, or clinical visit preparation or follow-up support on 2503 people in pain. Six studies (35.3%) received scores associated with high quality. Most cognitive and behavioral therapy studies showed an improvement in pain (n=7, 77.8%), activity limitation (n=4, 57.1%) and costs associated with treatment (n=3, 100%), whereas effects on depression (n=2, 28.6%) and anxiety (n=2, 50%) were less consistent. There was limited (n=2 from same research group) but promising evidence that Internet-based peer support programs can lead to improvements in pain intensity, activity limitation, health distress and self-efficacy; limited (n=4 from same research group) but promising evidence that social networking programs can reduce pain in children and adolescents; and insufficient evidence on Internet-based clinical support interventions. Internet-based interventions seem promising for people in pain, but it is still unknown what types of patients benefit most. More well-designed studies with diverse patient groups, active control conditions, and a better description of withdrawals are needed to strengthen the evidence concerning the impact of Internet-based interventions on people in pain. [ABSTRACT FROM AUTHOR]
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- 2011
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4. Questions that individuals with spinal cord injury have regarding their chronic pain: a qualitative study.
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Norman C, Bender JL, Macdonald J, Dunn M, Dunne S, Siu B, Hitzig SL, Jadad AR, and Hunter J
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Purpose. To explore the questions that community-dwelling individuals with a traumatic spinal cord injury (SCI) have regarding their chronic pain and to identify their preferred methods of acquiring this information. Method. Semi-structured interviews were conducted with 12 individuals experiencing SCI-related chronic pain. Qualitative content analysis was used to identify participants' questions about their pain and to organise them according to emergent themes. Results. Six themes pertaining to chronic pain were identified. These included: (1) cause, (2) communication, (3) expectation, (4) getting information, (5) management and (6) other's experience with chronic pain. Participants described using a variety of sources to obtain information about chronic pain including health care providers, other SCI-consumers and the Internet. Participants preferred to have chronic pain information available to them on an as needed basis. Conclusions. Individuals with SCI have numerous questions about their chronic pain and use a variety of information sources to answer them. Many are dissatisfied with the level of knowledge that family physicians have about SCI-related chronic pain. This study provides valuable information from the consumer's perspective, which can be used to develop interventions to help health care professionals and consumers manage SCI-related chronic pain. [ABSTRACT FROM AUTHOR]
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- 2010
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5. Phase I trial and pharmacokinetic study of bevacizumab in pediatric patients with refractory solid tumors: a Children's Oncology Group Study.
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Bender JL, Adamson PC, Reid JM, Xu L, Baruchel S, Shaked Y, Kerbel RS, Cooney-Qualter EM, Stempak D, Chen HX, Nelson MD, Krailo MD, Ingle AM, Blaney SM, Kandel JJ, Yamashiro DJ, and Children's Oncology Group Study
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- 2008
6. Lenvatinib Plus Ifosfamide and Etoposide in Children and Young Adults With Relapsed Osteosarcoma: A Phase 2 Randomized Clinical Trial.
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Gaspar N, Hung GY, Strauss SJ, Campbell-Hewson Q, Dela Cruz FS, Glade Bender JL, Koh KN, Whittle SB, Chan GC, Gerber NU, Palmu S, Morgenstern DA, Longhi A, Baecklund F, Lee JA, Locatelli F, Márquez Vega C, Janeway KA, McCowage G, McCabe MG, Bidadi B, Huang J, McKenzie J, Okpara CE, and Bautista F
- Abstract
Importance: The combination of ifosfamide and etoposide (IE) is commonly used to treat relapsed or refractory osteosarcoma; however, second-line treatment recommendations vary across guidelines., Objective: To evaluate whether the addition of lenvatinib to IE (LEN-IE) improves outcomes in children and young adults with relapsed or refractory osteosarcoma., Design, Setting, and Participants: The OLIE phase II, open-label, randomized clinical trial was conducted globally across Europe, Asia and the Pacific, and North America. From March 22, 2020, through November 11, 2021, the trial enrolled patients aged 2 to 25 years with high-grade osteosarcoma, measurable or evaluable disease per Response Evaluation Criteria in Solid Tumors, version 1.1 (RECIST 1.1), and 1 to 2 prior lines of systemic treatment. The data analyses were performed between March 22, 2020 (first patient in) and June 22, 2022 (data cutoff for the primary analysis), and September 29, 2023 (end of study final database lock)., Interventions: The OLIE trial assessed the efficacy and safety of lenvatinib (14 mg/m2 taken orally once daily) combined with up to 5 cycles of ifosfamide (3000 mg/m2 intravenously) and etoposide (100 mg/m2 intravenously) on days 1 to 3 of each cycle vs IE alone at the same doses. Patients randomized to IE could cross over to receive lenvatinib upon disease progression by independent imaging review., Main Outcomes and Measures: The primary end point was progression-free survival (PFS) per RECIST 1.1 by independent imaging review. The Kaplan-Meier method was used to estimate the PFS distribution, with a prespecified 1-sided significance threshold of .025 by stratified log-rank test. Secondary end points included PFS rate at 4 months and overall survival. Adverse events were summarized using descriptive statistics., Results: A total of 81 patients were enrolled (median [IQR] age, 15.0 [12.0-18.0] years; 46 males [56.8%]), with 40 in the LEN-IE arm and 41 in the IE arm. Median PFS was 6.5 months (95% CI, 5.7-8.2 months) for the LEN-IE arm and 5.5 months (95% CI, 2.9-6.5 months) for the IE arm (hazard ratio [HR], 0.54; 95% CI, 0.27-1.08; 1-sided P = .04). The rate of PFS at 4 months was 76.3% (95% CI, 59.3%-86.9%) in the LEN-IE arm and 66.0% (95% CI, 47.7%-79.2%) in the IE arm. Median overall survival was 11.9 months (95% CI, 10.1 months to not estimable) with LEN-IE and 17.4 months (95% CI, 14.2 months to not estimable) with IE (HR, 1.28; 95% CI, 0.60-2.70; 1-sided nominal P = .75). Grade 3 or higher treatment-related adverse events occurred in 35 of 39 patients (89.7%) in the LEN-IE arm and 31 of 39 patients (79.5%) in the IE arm., Conclusions and Relevance: Although LEN-IE did not meet prespecified statistical significance for improved PFS vs IE, this study demonstrates the importance of international collaboration and randomized clinical trials in patients with relapsed or refractory osteosarcoma and may inform future trial design., Trial Registration: ClinicalTrials.gov Identifier: NCT04154189.
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- 2024
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7. Pathways to cancer care after a suspected cancer diagnosis in the emergency department: a survey of emergency physicians across Ontario.
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Grewal K, Thompson C, Ovens H, Sutradhar R, Savage DW, Borgundvaag B, Cheskes S, de Wit K, Eskander A, Irish J, Bender JL, Krzyzanowska M, Mohindra R, Thiruganasambandamoorthy V, and McLeod SL
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Introduction: Little is known about how patients are managed after a suspected cancer diagnosis through the emergency department. The objective of this study was to examine the ED management, specifically referral practices, for ten suspected cancer diagnoses by emergency physicians across Ontario and to explore variability in management by cancer-type and centre., Methods: An electronic survey was distributed to emergency physicians across Ontario, asking about referral practices for patients who could be discharged from the ED with one of ten suspected cancer diagnoses. Options for referral included: in-ED consult, outpatient medical or surgical specialists, surgical or medical oncology, and specialized cancer clinics. Data were described using frequencies and proportions. Variance partition coefficients were calculated to determine variation in responses attributed to differences between hospitals, with physicians nested within hospitals., Results: 262 physicians from 54 EDs responded. Across most cancers, emergency physicians would refer to surgical specialists for further work-up; however, this ranged from 30.2% for lung cancer to 69.5% for head and neck cancer. For patients with an unknown primary malignancy, most physicians would refer to internal medicine clinic (34.3%) or obtain an in-ED consult (25.0%). Few physicians would refer directly to surgical or medical oncology from the ED. Comments suggest this may be due to oncologists requiring tissue confirmation of malignancy. Most referrals to specialized clinics were for suspected lung (30.2%) or breast cancer (19.5%); however, these appear to only be available at some centres. Variance in referrals between hospitals was lowest for breast cancer (variance partition coefficient = 8.6%) and highest for unknown primary malignancies (variance partition coefficient = 29.8%)., Interpretation: Physician management of new suspected cancer varies between EDs and is specific to cancer type. Strategies to standardize access to cancer care in a timely and equitable way for patients with newly suspected cancer in the ED are needed., (© 2024. The Author(s), under exclusive licence to the Canadian Association of Emergency Physicians (CAEP)/ Association Canadienne de Médecine d'Urgence (ACMU).)
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- 2024
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8. Use of implementation mapping to develop a multifaceted implementation strategy for an electronic prospective surveillance model for cancer rehabilitation.
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Lopez CJ, Neil-Sztramko SE, Tanyoas M, Campbell KL, Bender JL, Strudwick G, Langelier DM, Reiman T, Greenland J, and Jones JM
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Background: Electronic Prospective Surveillance Models (ePSMs) remotely monitor the rehabilitation needs of people with cancer via patient-reported outcomes at pre-defined time points during cancer care and deliver support, including links to self-management education and community programs, and recommendations for further clinical screening and rehabilitation referrals. Previous guidance on implementing ePSMs lacks sufficient detail on approaches to select implementation strategies for these systems. The purpose of this article is to describe how we developed an implementation plan for REACH, an ePSM system designed for breast, colorectal, lymphoma, and head and neck cancers., Methods: Implementation Mapping guided the process of developing the implementation plan. We integrated findings from a scoping review and qualitative study our team conducted to identify determinants to implementation, implementation actors and actions, and relevant outcomes. Determinants were categorized using the Consolidated Framework for Implementation Research (CFIR), and the implementation outcomes taxonomy guided the identification of outcomes. Next, determinants were mapped to the Expert Recommendations for Implementing Change (ERIC) taxonomy of strategies using the CFIR-ERIC Matching Tool. The list of strategies produced was refined through discussion amongst our team and feedback from knowledge users considering each strategy's feasibility and importance rating via the Go-Zone plot, feasibility and applicability to the clinical contexts, and use among other ePSMs reported in our scoping review., Results: Of the 39 CFIR constructs, 22 were identified as relevant determinants. Clinic managers, information technology teams, and healthcare providers with key roles in patient education were identified as important actors. The CFIR-ERIC Matching Tool resulted in 50 strategies with Level 1 endorsement and 13 strategies with Level 2 endorsement. The final list of strategies included 1) purposefully re-examine the implementation, 2) tailor strategies, 3) change record systems, 4) conduct educational meetings, 5) distribute educational materials, 6) intervene with patients to enhance uptake and adherence, 7) centralize technical assistance, and 8) use advisory boards and workgroups., Conclusion: We present a generalizable method that incorporates steps from Implementation Mapping, engages various knowledge users, and leverages implementation science frameworks to facilitate the development of an implementation strategy. An evaluation of implementation success using the implementation outcomes framework is underway., (© 2024. The Author(s).)
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- 2024
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9. Perspectives of Health Care Providers on Peer Support for Adolescents with Cancer in Pediatrics.
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Weidman DR, Lee SCS, Desmarais P, Stevens K, Klinger CA, Colquhoun H, Bender JL, and Gupta A
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- Humans, Adolescent, Female, Male, Social Support, Prospective Studies, Pediatrics methods, Surveys and Questionnaires, Neoplasms psychology, Neoplasms therapy, Health Personnel psychology, Peer Group
- Abstract
Health care providers (HCPs) play a key role in psychosocial care of adolescents with cancer (AWC) and present a unique perspective. This prospective study included a brief survey followed by an interview, seeking to understand HCPs' viewpoints on peer support needs of AWC. Participants were 10 multidisciplinary HCPs with 5-30 years of experience. Three key themes found were: observations made and relationships with AWC; challenges to providing support; and potential peer support interventions. HCPs want to provide peer support resources but lack adequate information. Next steps: interventions should include information dissemination to all HCPs caring for AWC.
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- 2024
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10. Implementation of an electronic prospective surveillance model for cancer rehabilitation: a mixed methods study protocol.
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Lopez C, Neil-Sztramko SE, Campbell KL, Langelier DM, Strudwick G, Bender JL, Greenland J, Reiman T, and Jones JM
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- Humans, Canada, Prospective Studies, Patient Reported Outcome Measures, Cancer Survivors, Research Design, Neoplasms rehabilitation
- Abstract
Introduction: An electronic prospective surveillance model (ePSM) uses patient-reported outcomes to monitor impairments along the cancer pathway for timely management. Randomised controlled trials show that ePSMs can effectively manage cancer-related impairments. However, ePSMs are not routinely embedded into practice and evidence-based approaches to implement them are limited. As such, we developed and implemented an ePSM, called REACH, across four Canadian centres. The objective of this study is to evaluate the impact and quality of the implementation of REACH and explore implementation barriers and facilitators., Methods and Analysis: We will conduct a 16-month formative evaluation, using a single-arm mixed methods design to routinely monitor key implementation outcomes, identify barriers and adapt the implementation plan as required. Adult (≥18 years) breast, colorectal, lymphoma or head and neck cancer survivors will be eligible to register for REACH. Enrolled patients complete brief assessments of impairments over the course of their treatment and up to 2 years post-treatment and are provided with a personalised library of self-management education, community programmes and when necessary, suggested referrals to rehabilitation services. A multifaceted implementation plan will be used to implement REACH within each clinical context. We will assess several implementation outcomes including reach, acceptability, feasibility, appropriateness, fidelity, cost and sustainability. Quantitative implementation data will be collected using system usage data and evaluation surveys completed by patient participants. Qualitative data will be collected through focus groups with patient participants and interviews with clinical leadership and management, and analysis will be guided by the Consolidated Framework for Implementation Research., Ethics and Dissemination: Site-specific ethics approvals were obtained. The results from this study will be presented at academic conferences and published in peer-reviewed journals. Additionally, knowledge translation materials will be co-designed with patient partners and will be disseminated to diverse knowledge users with support from our national and community partners., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
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- 2024
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11. Assessing the effectiveness of "BETTER Women", a community-based, primary care-linked peer health coaching programme for chronic disease prevention: protocol for a pragmatic, wait-list controlled, type 1 hybrid effectiveness-implementation trial.
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Kithulegoda N, Williams C, Senthilmurugan A, Aimola S, Atkinson J, Banerjee AT, Bazeghi F, Bender JL, Flynn S, Ghatage L, Goulbourne E, Grunfeld E, Heisey R, Rao A, Sutcliffe K, Lofters A, and Ivers NM
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- Humans, Female, Chronic Disease prevention & control, Middle Aged, Adult, Aged, Health Behavior, Pragmatic Clinical Trials as Topic, Health Promotion methods, Program Evaluation, Primary Health Care, Peer Group, Mentoring methods
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Introduction: The Building on Existing Tools to Improve Cancer and Chronic Disease Prevention and Screening in Primary Care (BETTER) programme trains allied health professionals working in primary care settings to develop personalised chronic disease 'prevention prescriptions' with patients. However, maintenance of health behaviour changes is difficult without ongoing support. Sustainable options to enhance the BETTER programme and ensure accessibility to underserved populations are needed. We designed the BETTER Women programme, which uses a digital app to match patients with a trained peer health coach (PHC) who provides ongoing support for health behaviour change after receipt of a BETTER prevention prescription in primary care., Methods and Analysis: We will conduct a type 1 hybrid implementation-effectiveness patient-randomised trial. Interested women aged 40-68 years will be recruited from three large, sociodemographically distinct primary care clinics (urban, suburban and rural). Patients will be randomised 1:1 to intervention or wait-list control after receipt of their BETTER prevention prescription. We will aim to recruit 204 patients per group (408 total). Effectiveness will be assessed by the primary outcome of targeted behaviours achieved for each participant at 6 months, consisting of three cancer screening tests (cervical, breast and colorectal) and four behavioural determinants of cancer and chronic disease (diet, smoking, alcohol use and physical activity). Data will be collected through patient survey and clinical chart review, measured at 3, 6 and 12 months. Implementation outcomes will be assessed through patient surveys and interviews with patients, peer health coaches and healthcare providers. An embedded economic evaluation will examine cost per quality-adjusted life-year and per additional health behavioural targets achieved., Ethics and Dissemination: This study has been approved by Women's College Hospital Research Ethics Board (REB), the Royal Victoria Regional Health Centre REB and the University of Toronto REB. All participants will provide informed consent prior to enrolment. Participation is voluntary and withdrawal will have no impact on the usual care received from their primary care provider. The results of this trial will be published in peer-reviewed journals and shared via conference presentations. Deidentified datasets will be shared on request, after publication of results., Trial Registration Number: NCT04746859., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
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- 2024
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12. Olaparib for childhood tumors harboring defects in DNA damage repair genes: arm H of the NCI-COG Pediatric MATCH trial.
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Glade Bender JL, Pinkney K, Williams PM, Roy-Chowdhuri S, Patton DR, Coffey BD, Reid JM, Piao J, Saguilig L, Alonzo TA, Berg SL, Ramirez NC, Fox E, Weigel BJ, Hawkins DS, Mooney MM, Takebe N, Tricoli JV, Janeway KA, Seibel NL, and Parsons DW
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- Adolescent, Adult, Child, Child, Preschool, Female, Humans, Infant, Male, Young Adult, Ataxia Telangiectasia Mutated Proteins genetics, BRCA1 Protein genetics, BRCA2 Protein genetics, DNA Damage drug effects, DNA-Binding Proteins genetics, Germ-Line Mutation, Poly(ADP-ribose) Polymerase Inhibitors therapeutic use, Poly(ADP-ribose) Polymerase Inhibitors adverse effects, DNA Repair drug effects, DNA Repair genetics, Neoplasms drug therapy, Neoplasms genetics, Phthalazines therapeutic use, Phthalazines adverse effects, Phthalazines administration & dosage, Piperazines therapeutic use, Piperazines administration & dosage, Piperazines adverse effects
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Background: The National Cancer Institute-Children's Oncology Group Pediatric Molecular Analysis for Therapy Choice (MATCH) precision oncology platform trial enrolled children aged 1-21 years with treatment-refractory solid tumors and predefined actionable genetic alterations. Patients with tumors harboring alterations in DNA damage repair (DDR) genes were assigned to receive olaparib., Methods: Tumor and blood samples were submitted for centralized molecular testing. Tumor and germline sequencing were conducted in parallel. Olaparib was given twice daily for 28-day cycles starting at a dose 30% lower than the adult recommended phase 2 dose (RP2D). The primary endpoint was the objective response., Results: Eighteen patients matched (1.5% of those screened) based on the presence of a deleterious gene alteration in BRCA1/2, RAD51C/D, or ATM detected by tumor sequencing without germline subtraction or analysis of loss of heterozygosity (LOH). Eleven (61%) harbored a germline mutation, with only one exhibiting LOH. Six patients enrolled and received the olaparib starting dose of 135 mg/m2/dose. Two participants were fully evaluable; 4 were inevaluable because <85% of the prescribed dose was administered during cycle 1. There were no dose-limiting toxicities or responses. Minimal hematologic toxicity was observed., Conclusion: Most DDR gene alterations detected in Pediatric MATCH were germline, monoallelic, and unlikely to confer homologous recombination deficiency predicting sensitivity to olaparib monotherapy. The study closed due to poor accrual., Clinicaltrials.gov Identifier: NCT03233204. IRB approved: initial July 24, 2017., (© The Author(s) 2024. Published by Oxford University Press.)
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- 2024
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13. Outcomes in ovarian Sertoli-Leydig cell tumor: A report from the International Pleuropulmonary Blastoma/DICER1 and Ovarian and Testicular Stromal Tumor Registries.
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Nelson AT, Harris AK, Watson D, Kamihara J, Chen KS, Stall JN, Devins KM, Young RH, Olson DR, Mallinger PHR, Mitchell SG, Hoffman LM, Halliday G, Suleymanova AM, Glade Bender JL, Messinger YH, Herzog CE, Field AL, Frazier AL, Stewart DR, Dehner LP, Hill DA, Billmire DF, Schneider DT, and Schultz KAP
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- Humans, Female, Adult, Middle Aged, Young Adult, Aged, Male, Adolescent, Chemotherapy, Adjuvant, Sex Cord-Gonadal Stromal Tumors pathology, Sex Cord-Gonadal Stromal Tumors surgery, Sex Cord-Gonadal Stromal Tumors diagnosis, Testicular Neoplasms pathology, Testicular Neoplasms surgery, Lung Neoplasms pathology, Lung Neoplasms surgery, Sertoli-Leydig Cell Tumor pathology, Sertoli-Leydig Cell Tumor surgery, Ovarian Neoplasms pathology, Ovarian Neoplasms surgery, DEAD-box RNA Helicases genetics, Pulmonary Blastoma pathology, Registries, Ribonuclease III genetics
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Objective: Sertoli-Leydig cell tumors (SLCTs) are rare sex cord-stromal tumors, representing <0.5% of all ovarian tumors. We sought to describe prognostic factors, treatment and outcomes for individuals with ovarian SLCT., Methods: Individuals with SLCT were enrolled in the International Pleuropulmonary Blastoma/DICER1 Registry and/or the International Ovarian and Testicular Stromal Tumor Registry. Medical records were systematically abstracted, and pathology was centrally reviewed when available., Results: In total, 191 participants with ovarian SLCT enrolled, with most (92%, 175/191) presenting with FIGO stage I disease. Germline DICER1 results were available for 156 patients; of these 58% had a pathogenic or likely pathogenic germline variant. Somatic (tumor) DICER1 testing showed RNase IIIb hotspot variants in 97% (88/91) of intermediately and poorly differentiated tumors. Adjuvant chemotherapy was administered in 40% (77/191) of cases, and among these, nearly all patients received platinum-based regimens (95%, 73/77), and 30% (23/77) received regimens that included an alkylating agent. Three-year recurrence-free survival for patients with stage IA tumors was 93.6% (95% CI: 88.2-99.3%) compared to 67.1% (95% CI: 55.2-81.6%) for all stage IC and 60.6% (95% CI: 40.3-91.0%) for stage II-IV (p < .001) tumors. Among patients with FIGO stage I tumors, those with mesenchymal heterologous elements treated with surgery alone were at higher risk for recurrence (HR: 74.18, 95% CI: 17.99-305.85)., Conclusion: Most individuals with SLCT fare well, though specific risk factors such as mesenchymal heterologous elements are associated with poor prognosis. We also highlight the role of DICER1 surveillance in early detection of SLCT, facilitating stage IA resection., Competing Interests: Declaration of competing interest Dr. Hill is owner of ResourcePath LLC, a company which does research and development of laboratory tests including for DICER1 cancers. That work is unrelated to the information presented in this article. Dr. Stewart provides telegenetics services for Genome Medical, Inc., in accordance with relevant National Cancer Institute policies. The remaining authors have no conflicts to disclose., (Copyright © 2024 Elsevier Inc. All rights reserved.)
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- 2024
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14. Stage of diagnosis and survival for prostate cancer among immigrant men in Ontario, Canada.
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Lofters AK, Sammott SA, Swayze S, Bender JL, Alibhai SMH, Henry A, Noel K, and Datta G
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- Humans, Male, Ontario epidemiology, Middle Aged, Aged, Retrospective Studies, Adult, Aged, 80 and over, Young Adult, Survival Rate, Incidence, Caribbean Region ethnology, Caribbean Region epidemiology, Prostatic Neoplasms mortality, Prostatic Neoplasms diagnosis, Prostatic Neoplasms epidemiology, Prostatic Neoplasms ethnology, Prostatic Neoplasms pathology, Emigrants and Immigrants statistics & numerical data, Neoplasm Staging
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Introduction: We previously identified specific immigrant groups (West African and Caribbean) with increased incidence of prostate cancer in Ontario, Canada. In this population-level retrospective cohort study, we used administrative databases to compare stage of diagnosis, 5-year overall survival and prostate cancer-specific survival for immigrants versus long-term residents of Ontario., Methods: We linked several provincial-level databases available at ICES, an independent, non-profit research institute. We included all male Ontario residents 20-105 years of age who had an incident prostate cancer diagnosis date between March 31, 2008 and March 31, 2017, stratified into immigrants vs. long-term residents. We used multivariable logistic regression to determine the odds of early (stage I-II) vs. late (III-IV) stage of diagnosis, adjusting for age, co-morbidities, neighbourhood income and continuity of care. We produced Kaplan-Meier curves for 5-year overall survival and for 5-year prostate cancer-specific survival., Results: Compared to long-term residents, men from West Africa (adjusted odds ratio 1.66 [95% CI 1.16-2.38], East Africa (AOR 1.54 [95% CI 1.02-2.33]) and the Caribbean (AOR 1.22 [95% CI 1.01-1.47]) had a diagnostic stage advantage, and men from South Asia were most likely to be diagnosed at a late stage. In both unadjusted and adjusted analyses, overall and prostate cancer-specific survival were higher for immigrants than long-term residents. The highest five-year overall survival was seen for men from Sub-Saharan Africa and the Caribbean, and the lowest was seen for South Asian men, where 11.7% died within five years of diagnosis., Conclusion: Immigrant men in Ontario with prostate cancer are more likely to be diagnosed at an early stage and to survive for 5 years than long-term residents. Among immigrant men, men from the Caribbean and Sub-Saharan Africa have the greatest stage and survival advantage and South Asian men the least. Differences in awareness, diagnostic suspicion, genetic predisposition, and social factors may play a role in these findings., Competing Interests: Declaration of Competing Interest None, (Copyright © 2024 The Authors. Published by Elsevier Ltd.. All rights reserved.)
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- 2024
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15. Virtual Cancer Care Beyond the COVID-19 Pandemic: Patient and Staff Perspectives and Recommendations.
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Abdelmutti N, Powis M, Macedo A, Liu Z, Bender JL, Papadakos J, Hack S, Rajnish N, Rana P, Kittuppanantharajah S, Lovas M, Melwani S, Moody L, Elliot M, Ashfaq I, Avery L, Mohammed H, Berlin A, and Krzyzanowska MK
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- Humans, Male, Female, Middle Aged, SARS-CoV-2, Adult, Pandemics, Aged, Canada epidemiology, Surveys and Questionnaires, Patient Satisfaction, COVID-19 epidemiology, Telemedicine methods, Neoplasms therapy, Neoplasms epidemiology
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Purpose: COVID-19 catalyzed rapid implementation of virtual cancer care (VC); however, work is needed to inform long-term adoption. We evaluated patient and staff experiences with VC at a large urban, tertiary cancer center to inform recommendations for postpandemic sustainment., Methods: All physicians who had provided VC during the pandemic and all patients who had a valid e-mail address on file and at least one visit to the Princess Margaret Cancer Centre in Toronto, Canada, in the preceding year were invited to complete a survey. Interviews and focus groups with patients and staff across the cancer center were analyzed using qualitative descriptive analysis and triangulated with survey findings., Results: Response rates for patients and physicians were 15% (2,343 of 15,169) and 41% (100 of 246), respectively. A greater proportion of patients than physicians were satisfied with VC (80.1 v 53.4%; P < .01). In addition, fewer patients than physicians felt that virtual visits were worse than those conducted in person (28.0 v 43.4%; P < .01) and that telephone and video visits negatively affected the human interaction that they valued (59.8% v 82.0%; P < .01). Major barriers to VC for patients were respect for care preferences and personal boundaries, accessibility, and equitable access. For staff, major barriers included a lack of role clarity, dedicated resources (space and technology), integration of nursing and allied health, support (administrative, clinical, and technical), and guidance on appropriateness of use., Conclusion: Patient and staff perceptions and barriers to virtual care are different. Moving forward, we need to pay attention to both staff and patient experiences with virtual care since this will have major implications for long-term adoption into clinical practice.
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- 2024
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16. Factors influencing parents' choice of palliative treatment goals for children with relapsed or refractory neuroblastoma: A multi-site longitudinal survey study.
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Kaye EC, Smith J, Zhou Y, Bagatell R, Baker JN, Cohn SL, Diller LR, Glade Bender JL, Granger MM, Marachelian A, Park JR, Rosenberg AR, Shusterman S, Twist CJ, and Mack JW
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- Child, Humans, Goals, Prospective Studies, Neoplasm Recurrence, Local therapy, Parents, Surveys and Questionnaires, Longitudinal Studies, Palliative Care, Neuroblastoma therapy
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Background: Many parents of children with advanced cancer report curative goals and continue intensive therapies that can compound symptoms and suffering. Factors that influence parents to choose palliation as the primary treatment goal are not well understood. The objective of this study was to examine experiences impacting parents' report of palliative goals adjusted for time. The authors hypothesized that awareness of poor prognosis, recall of oncologists' prognostic disclosure, intensive treatments, and burdensome symptoms and suffering would influence palliative goal-setting., Methods: The authors collected prospective, longitudinal surveys from parents of children with relapsed/refractory neuroblastoma at nine pediatric cancer centers across the United States, beginning at relapse and continuing every 3 months for 18 months or until death. Hypothesized covariates were examined for possible associations with parental report of palliative goals. Generalized linear mixed models were used to evaluate factors associated with parents' report of palliative goals at different time points., Results: A total of 96 parents completed surveys. Parents were more likely to report a primary goal of palliation when they recalled communication about prognosis by their child's oncologist (odds ratio [OR], 52.48; p = .010). Treatment intensity and previous ineffective therapeutic regimens were not associated with parents' report of palliative goals adjusted for time. A parent who reported new suffering for their child was less likely to report palliative goals (OR, 0.13; p = .008)., Conclusions: Parents of children with poor prognosis cancer may not report palliative goals spontaneously in the setting of treatment-related suffering. Prognostic communication, however, does influence palliative goal-setting. Evidence-based interventions are needed to encourage timely, person-centered prognostic disclosure in the setting of advanced pediatric cancer., Plain Language Summary: Many parents of children with poor-prognosis cancer continue to pursue curative treatments that may worsen symptoms and suffering. Little is known about which factors influence parents to choose palliative care as their child's main treatment goal. To explore this question, we asked parents of children with advanced neuroblastoma across the United States to complete multiple surveys over time. We found that the intensity of treatment, number of treatments, and suffering from treatment did not influence parents to choose palliative goals. However, when parents remembered their child's oncologist talking about prognosis, they were more likely to choose palliative goals of care., (© 2023 American Cancer Society.)
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- 2024
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17. Connectedness to the young adult cancer community and post-traumatic growth: A young adults with cancer in their prime study.
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Mah A, D'Agostino N, Santiago AT, Garland SN, Petrella A, Sabiston CM, Chalifour K, Eaton G, and Bender JL
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- Humans, Young Adult, Female, Adult, Male, Self-Help Groups, Social Support, Canada, Posttraumatic Growth, Psychological, Neoplasms
- Abstract
Objective: For young adults (YAs) with cancer, connecting with peer cancer survivors can provide a unique sense of community and may enhance post-traumatic growth (PTG). This study examined the relationship between connectedness to the YA cancer community and PTG among YAs, independent of overall social support., Methods: Data were obtained from the young adults with cancer in their prime study, a cross-Canada survey of YA cancer survivors. Participants were stratified by level of social support into two groups (low/high). Multivariable logistic regression was used to examine the association between PTG and connectedness to the YA community adjusting for respondent characteristics, and the interaction between support and connectedness., Results: Of 444 respondents, mean age was 34.2 (SD = 6.0), time-since-diagnosis was 4.8 years (SD = 5.4), and 87% were female. Over two-thirds of respondents (71%) reported feeling connected to the YA community. Level of connectedness to the YA community did not differ by social support group, and interaction between social support and connectedness to the YA community was not significant. In the adjusted regression, connectedness to the YA community (aOR = 2.29, 95% CI: 1.10-4.91), high social support (aOR = 2.98, 95% CI: 1.36-6.74), greater time-since-diagnosis (aOR = 1.09, 95% CI: 1.04-1.15) and female sex (aOR = 2.21, 95% CI: 1.23-4.04) were associated with greater odds of moderate-to-high PTG., Conclusions: Feeling connected to a community of YA cancer peers was associated with moderate-to-high PTG among YAs, independent of overall perceived social support. Future efforts should increase access to YA cancer communities and foster a sense of connectedness among YAs with cancer., (© 2024 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.)
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- 2024
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18. Virtual follow-up care among breast and prostate cancer patients during and beyond the COVID-19 pandemic: Association with distress.
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Bender JL, Scruton S, Wong G, Abdelmutti N, Berlin A, Easley J, Liu ZA, McGee S, Rodin D, Sussman J, and Urquhart R
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- Male, Humans, Aged, Aftercare, Pandemics, Breast, COVID-19 epidemiology, Prostatic Neoplasms epidemiology, Prostatic Neoplasms therapy
- Abstract
Background: The purpose of this study was to investigate associations between self-reported distress (anxiety/depression) and satisfaction with and desire for virtual follow-up (VFU) care among cancer patients during and beyond the COVID-19 pandemic., Methods: Breast and prostate cancer patients receiving VFU at an urban cancer centre in Toronto, Canada completed an online survey on their sociodemographic, clinical, and technology, characteristics and experience with and views on VFU. EQ5D-5 L was used to assess distress. Statistical models adjusted for age, gender, education, income and Internet confidence., Results: Of 352 participants, average age was 65 years, 48% were women,79% were within 5 years of treatment completion, 84% had college/university education and 74% were confident Internet users. Nearly, all (98%) had a virtual visit via phone and 22% had a virtual visit via video. The majority of patients (86%) were satisfied with VFU and 70% agreed that they would like VFU options after the COVID-19 pandemic. Participants who reported distress and who were not confident using the Internet for health purposes were significantly less likely to be satisfied with VFU (OR = 0.4; 95% CI: 0.2-0.8 and OR = 0.19; 95% CI: 0.09-0.38, respectively) and were less likely to desire VFU option after the COVID-19 pandemic (OR = 0.49; 95% CI: 0.30-0.82 and OR = 0.41; 95% CI: 0.23-0.70, respectively)., Conclusions: The majority of respondents were satisfied with VFU and would like VFU options after the COVID-19 pandemic. Future research should determine how to optimize VFU options for cancer patients who are distressed and who are less confident using virtual care technology., (© 2024 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)
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- 2024
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19. Poor health disparities among racialized students in a Canadian university.
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Banerjee AT, Lau A, and Bender JL
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- Humans, Canada, Universities, Ontario, Health Inequities, Students, Ethnicity
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Objective: The short report aims to examine differences in self-rated general health across racialized post-secondary students at a university in Ontario, Canada., Methods: Binary logistic regression analysis was used to examine poor health as an outcome among racialized students as whole, as well as across Asian, South Asian, Afro-Caribbean and Middle Eastern student groups in comparison to white Caucasian post-secondary students., Results: After adjusting for several covariates, racialized students as a whole had 2.43 times the odds of reporting poor general health compared to white Caucasian students. Asian (OR = 2.77; CI = 1.84-4.18; p < 0.05) and South Asian (OR = 2.52; CI = 1.56-4.08; p < 0.05) students were significantly more likely to report poor health compared to white Caucasian students., Conclusion: The findings call for further attention to the health needs of racialized post-secondary students living in Canada and creating campuses where diverse student populations feel safe and systemically included.
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- 2024
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20. Delays in Pediatric Evaluation of New and Relevant Cancer Therapies.
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Ortiz MV and Glade Bender JL
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- Child, Humans, Time Factors, Neoplasms therapy
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Competing Interests: Declaration of Competing Interest M.O. acknowledges active research support from the Rally Foundation for Childhood Cancer Research; Infinite Love for Kids Fighting Cancer; The Jed Ian Taxel Foundation for Rare Cancer Research; Cannonball Kids' cancer; Cookies for Kids' Cancer; the Starr Cancer Consortium; Conquer Cancer, the ASCO Foundation; Handstand Walk for Kids; the Serra Family and the Bianco Family Foundation; Team Caroline; and the National Cancer Institute (NCI) of the National Institutes of Health (NIH) via U01 CA263967. J.B. acknowledges additional grant support from NCIP30 CA008748, NCIP50 CA217694, NIH National Clinical Trials Network Grants U10CA180886 and UM1CA228823, Alex’s Lemonade Stand Foundation, Hyundai Hope on Wheels, Team Connor Foundation, and Curing Kids Cancer. She has served as a paid consultant for Jazz Pharmaceuticals (limited to one pediatric advisory board); an uncompensated consultant on DSMB for Springworks, Merck, and Pfizer; and an uncompensated consultant on pediatric advisory boards for BMS and Eisai. M.O. receives institutional research support for clinical trials from Chugai, Amgen, Karyopharm, and Bayer. J.B. receives institutional research support for clinical trials from Jazz Pharmaceuticals, Lilly, Eisai, Loxo Oncology, Cellectar Biosciences, and Bayer. The authors declare no conflicts of interest.
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- 2024
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21. Access to cancer clinical trials for racialised older adults: an equity-focused rapid scoping review protocol.
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Li V, Alibhai SMH, Noel K, Fazelzad R, Haase K, Mariano C, Durbano S, Sattar S, Newton L, Dawe D, Bell JA, Hsu T, Wong ST, Lofters A, Bender JL, Manthorne J, and Puts MTE
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- Humans, Adolescent, Adult, Aged, Research Design, Peer Review, Review Literature as Topic, Neoplasms therapy
- Abstract
Background: The intersection of race and older age compounds existing health disparities experienced by historically marginalised communities. Therefore, racialised older adults with cancer are more disadvantaged in their access to cancer clinical trials compared with age-matched counterparts. To determine what has already been published in this area, the rapid scoping review question are: what are the barriers, facilitators and potential solutions for enhancing access to cancer clinical trials among racialised older adults?, Methods: We will use a rapid scoping review methodology in which we follow the six-step framework of Arksey and O'Malley, including a systematic search of the literature with abstract and full-text screening to be conducted by two independent reviewers, data abstraction by one reviewer and verification by a second reviewer using an Excel data abstraction sheet. Articles focusing on persons aged 18 and over who identify as a racialised person with cancer, that describe therapies/therapeutic interventions/prevention/outcomes related to barriers, facilitators and solutions to enhancing access to and equity in cancer clinical trials will be eligible for inclusion in this rapid scoping review., Ethics and Dissemination: All data will be extracted from published literature. Hence, ethical approval and patient informed consent are not required. The findings of the scoping review will be submitted for publication in a peer-reviewed journal and presentation at international conferences., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
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- 2024
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22. A pre-implementation examination of barriers and facilitators of an electronic prospective surveillance model for cancer rehabilitation: a qualitative study.
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Lopez CJ, Jones JM, Campbell KL, Bender JL, Strudwick G, Langelier DM, Reiman T, Greenland J, and Neil-Sztramko SE
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- Humans, Prospective Studies, Quality of Life, Qualitative Research, Electronics, Primary Health Care, Neoplasms
- Abstract
Background: An electronic Prospective Surveillance Model (ePSM) uses patient-reported outcomes to monitor symptoms along the cancer pathway for timely identification and treatment. Randomized controlled trials show that ePSMs can effectively manage treatment-related adverse effects. However, an understanding of optimal approaches for implementing these systems into routine cancer care is limited. This study aimed to identify barriers and facilitators prior to the implementation of an ePSM to inform the selection of implementation strategies., Methods: A qualitative study using virtual focus groups and individual interviews was conducted with cancer survivors, oncology healthcare providers, and clinic leadership across four cancer centres in Canada. The Consolidated Framework for Implementation Research (CFIR) guided the interviews and analysis of barriers and facilitators based on five domains (intervention characteristics, individual characteristics, inner setting, outer setting, and process)., Results: We conducted 13 focus groups and nine individual interviews with 13 patient participants and 56 clinic staff. Of the 39 CFIR constructs, 18 were identified as relevant determinants to the implementation. The adaptability, relative advantage, and complexity of an ePSM emerged as key intervention-level factors that could influence implementation. Knowledge of the system was important at the individual level. Within the inner setting, major determinants were the potential fit of an ePSM with clinical workflows (compatibility) and the resources that could be dedicated to the implementation effort (readiness for implementation). In the outer setting, meeting the needs of patients and the availability of rehabilitation supports were key determinants. Engaging various stakeholders was critical at the process level., Conclusions: Improving the implementation of ePSMs in routine cancer care has the potential to facilitate early identification and management of treatment-related adverse effects, thereby improving quality of life. This study provides insight into important factors that may influence the implementation of an ePSM, which can be used to select appropriate implementation strategies to address these factors., (© 2023. The Author(s).)
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- 2024
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23. Subclonal Somatic Copy-Number Alterations Emerge and Dominate in Recurrent Osteosarcoma.
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Kinnaman MD, Zaccaria S, Makohon-Moore A, Arnold B, Levine MF, Gundem G, Arango Ossa JE, Glodzik D, Rodríguez-Sánchez MI, Bouvier N, Li S, Stockfisch E, Dunigan M, Cobbs C, Bhanot UK, You D, Mullen K, Melchor JP, Ortiz MV, O'Donohue TJ, Slotkin EK, Wexler LH, Dela Cruz FS, Hameed MR, Glade Bender JL, Tap WD, Meyers PA, Papaemmanuil E, Kung AL, and Iacobuzio-Donahue CA
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- Humans, Whole Genome Sequencing, Genomics, Recurrence, DNA Copy Number Variations, Mutation, Osteosarcoma genetics, Bone Neoplasms genetics
- Abstract
Multiple large-scale genomic profiling efforts have been undertaken in osteosarcoma to define the genomic drivers of tumorigenesis, therapeutic response, and disease recurrence. The spatial and temporal intratumor heterogeneity could also play a role in promoting tumor growth and treatment resistance. We conducted longitudinal whole-genome sequencing of 37 tumor samples from 8 patients with relapsed or refractory osteosarcoma. Each patient had at least one sample from a primary site and a metastatic or relapse site. Subclonal copy-number alterations were identified in all patients except one. In 5 patients, subclones from the primary tumor emerged and dominated at subsequent relapses. MYC gain/amplification was enriched in the treatment-resistant clones in 6 of 7 patients with multiple clones. Amplifications in other potential driver genes, such as CCNE1, RAD21, VEGFA, and IGF1R, were also observed in the resistant copy-number clones. A chromosomal duplication timing analysis revealed that complex genomic rearrangements typically occurred prior to diagnosis, supporting a macroevolutionary model of evolution, where a large number of genomic aberrations are acquired over a short period of time followed by clonal selection, as opposed to ongoing evolution. A mutational signature analysis of recurrent tumors revealed that homologous repair deficiency (HRD)-related SBS3 increases at each time point in patients with recurrent disease, suggesting that HRD continues to be an active mutagenic process after diagnosis. Overall, by examining the clonal relationships between temporally and spatially separated samples from patients with relapsed/refractory osteosarcoma, this study sheds light on the intratumor heterogeneity and potential drivers of treatment resistance in this disease., Significance: The chemoresistant population in recurrent osteosarcoma is subclonal at diagnosis, emerges at the time of primary resection due to selective pressure from neoadjuvant chemotherapy, and is characterized by unique oncogenic amplifications., (©2023 The Authors; Published by the American Association for Cancer Research.)
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- 2023
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24. EZH2 inhibition: it's all about the context.
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Rosen EY, Shukla NN, and Glade Bender JL
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- Humans, Child, Biphenyl Compounds, Morpholines, DNA Helicases, Nuclear Proteins, Transcription Factors, SMARCB1 Protein, Enhancer of Zeste Homolog 2 Protein genetics, Benzamides, Neoplasms drug therapy
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- 2023
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25. A comparison of the sociodemographic, medical, and psychosocial characteristics of adolescents and young adults diagnosed with cancer recruited in-person and online: A Canadian cross-sectional survey.
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Bender JL, Akinnibosun R, Puri N, D'Agostino N, Drake EK, Tsimicalis A, Howard AF, Garland SN, Chalifour K, and Gupta AA
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Introduction: Adolescents and young adults diagnosed with cancer (AYAs) are under-represented in research. The Internet and social media could increase the reach of recruitment efforts but may impact sample characteristics. This study evaluated the characteristics of AYAs recruited in-person at an urban hospital versus the Internet in terms of their sociodemographic and medical characteristics, and psychosocial wellbeing, and offers recommendation for increasing the inclusivity and representativeness of research samples., Methods: Participant data from a cross-sectional survey of AYAs in Canada were evaluated. In-person hospital recruitment used a registry to identify patients attending ambulatory clinics. Internet recruitment included notices on hospital, team members', and community partners' social media channels, and email newsletters. Independent sample t -tests and Chi-squared tests were used to identify differences in participant sociodemographic, medical, and psychosocial characteristics based on recruitment source., Results: Of 436 participants, 217 (49.8%) were recruited in-person and 219 (50.2%) online. Online participants were more likely: to be white ( p < .001), women ( p < .001), and Canadian-born ( p < .001); to speak English at home ( p < .001), live alone ( p = .001) and live in rural settings ( p = .014); and to be farther from diagnosis ( p = .023), diagnosed with breast cancer ( p < .001), and cancer free ( p < .001) compared to the hospital sample. Online participants also reported higher anxiety, depression, and loneliness ( p < .001), and lower social support (p < .001), self-efficacy for coping with cancer ( p < .001), and life satisfaction ( p = .006)., Conclusions: Online recruitment yielded a more geographically diverse but less sociodemographically diverse sample of AYAs who were farther from diagnosis and had poorer psychosocial wellbeing than in-person recruitment at an urban hospital. Future research efforts should consider partnering with under-represented communities and using targeted and stratified online and in-person recruitment strategies to achieve an inclusive and representative sample of AYAs., Competing Interests: The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article., (© The Author(s) 2023.)
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- 2023
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26. Understanding sleep quality in a national cohort of young adult cancer survivors: Results from the YACPRIME study.
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Garland SN, Tulk J, Cotter R, Zhou ES, Daniel LC, Schulte FSM, Bender JL, Chalifour K, and Eaton G
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- Humans, Female, Young Adult, Adult, Male, Sleep Quality, Quality of Life psychology, Canada epidemiology, Sleep, Cancer Survivors psychology, Sleep Initiation and Maintenance Disorders epidemiology, Neoplasms complications
- Abstract
Purpose: A cancer diagnosis in young adulthood can negatively impact sleep quality. The present study describes sleep issues in young adults (YAs) and analyzes potential demographic and clinical characteristics related to sleep quality., Methods: Canadian YAs (n = 359) diagnosed with cancer between ages 15-39 participated in the study. Pittsburgh Sleep Quality Index (PSQI) items were examined to identify specific sleep issues that occurred 3+ times per week. Logistic regression was used to examine demographic, clinical, and symptom-related variables associated with poor sleep quality (defined as a PSQI global score >8) and sleep medication use., Results: Participants were predominantly female (87.5%) with an average age of 32 years. Of the sample, 52% had poor sleep quality, 55.5% took >30 min to fall asleep, 32.9% slept <7 h, and 54.6% reported a habitual sleep efficiency of <85%. YAs with poor sleep quality were 5.7 times more likely to report severe distress (p=<.001), as well as 1.8 times more likely to report poorer mental (p = .03) and physical functioning (p = .05). Nearly half (44%) of YAs used sleep medication to help them sleep. YAs who reported severe psychological distress were 2.4 times more likely to use sleeping medication (p = .01), whereas those with a household income ≥$100,000/year were half as likely to use medication to help with sleep (p = .04)., Conclusion: Psychological distress is associated with worse sleep quality and sleep medication use in YA cancer survivors. Sleep quality may be a possible target for future research and intervention to promote long-term function and recovery., Competing Interests: Declaration of competing interest Eric S. Zhou has received grant funding from Jazz Pharmaceuticals and Harmony Biosciences, and consulting fees from MindUP and Samsung for work unrelated to the content of this manuscript., (Copyright © 2023 Elsevier B.V. All rights reserved.)
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- 2023
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27. Pediatric DDR inhibitor combinations: Are WEE1 there yet?
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Slotkin EK, Ortiz MV, and Glade Bender JL
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- Humans, Child, DNA Damage, Cell Cycle Proteins, Cell Line, Tumor, Protein-Tyrosine Kinases, Pyrimidines, Pyrimidinones pharmacology
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- 2023
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28. An Investigation of Social Status among Adolescents and Young Adults Who Have Been Diagnosed with Cancer in Canada.
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Schulte FSM, Hou SHJ, Bender JL, Tulk J, Wurz A, Petrella A, Sabiston CM, D'Agostino N, Chalifour K, Eaton G, and Garland SN
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Background: Aims were to: (1) compare social status among AYAs diagnosed with cancer to a community population; (2) describe AYAs' change in employment/education status; and (3) examine predictors of social status., Method: Social status (i.e., education, employment, relationship status, and living arrangement) was captured from young adults diagnosed with cancer recruited via social media through a community-based organization from across Canada and randomly matched to a community sample by sex, age, province of residence, total household income and race/ethnicity at a ratio of 1:3., Results: AYAs with cancer (N = 622) were an average of 4.45 (SD = 5.42) years from the completion of treatment and were less likely to be employed (χ
2 = 96.35, p < 0.001) and more likely to be living at home with parents (χ2 = 17.00, p < 0.001). There were no differences in education or relationship status. Overall, 41% and 45% of AYAs reported quitting school or work, respectively. Non-metastatic disease (AOR 3.23, 95% CI 1.08-9.62), and better physical (AOR 1.07 95% CI 1.04-1.10) and mental quality of life (QOL)(AOR 1.06 95% CI 1.03-1.09), were associated with employment. Worse mental QOL (AOR 1.04 95% CI 1.01-1.07), less post-traumatic growth (AOR 1.01 95% CI 1.00-1.03), and social support (AOR 0.27, 95% CI 0.18-0.41) were associated with being single. Non-White race (AOR 3.19 95% CI 1.02-9.97) and less post-traumatic growth (AOR 0.97 95% CI 0.95-0.99) were associated with living with parents., Conclusions: AYAs diagnosed with cancer experience differences in attainment of employment and independent living compared to a community sample. These challenges may have implications for physical and mental QOL.- Published
- 2023
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29. Peer Support Perspectives of Parents of Adolescents with Cancer in Pediatrics.
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Weidman DR, Lee SCS, Desmarais P, Stevens K, Klinger CA, Colquhoun H, Bender JL, and Gupta A
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- Humans, Child, Adolescent, Prospective Studies, Parents psychology, Counseling, Neoplasms therapy, Pediatrics
- Abstract
Parents of adolescents with cancer (AWC) provide critical support throughout the cancer journey and could offer key insights into support needs. This prospective study aimed to obtain parent perspectives on peer support needs of AWC. Ten individual parents (9 mothers and 1 father) completed a survey and a semistructured interview. Four themes were identified: cancer journey challenges; emotions, reactions, and coping; personal support preferences; and AWC's support needs. Parents recognized that AWC require various support, but lacked insight into their specific peer support desires. Next step interventions should focus on peer support for AWC, while also incorporating peer support for parents.
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- 2023
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30. Matched and moving: exploring daily social support among women partnered for exercise after a breast cancer diagnosis.
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Murray RM, Smith-Turchyn J, Vani MF, McDonough MH, Fong AJ, Mina DS, Arbour-Nicitopoulos KP, Trinh L, Jones JM, Bender JL, Culos-Reed SN, Tomasone JR, and Sabiston CM
- Subjects
- Humans, Female, Exercise, Motor Activity, Social Support, Fitness Trackers, Breast Neoplasms diagnosis, Breast Neoplasms therapy
- Abstract
Purpose: Exercise and social support are non-pharmacological strategies that improve health and wellbeing in women treated for breast cancer (WTBC). However, strategies to facilitate support and exercise in WTBC are typically resource intensive. The purpose of this study was to examine whether various forms of social support received from a matched peer were associated with increased exercise among WTBC., Methods: A daily diary study was conducted to examine naturally occurring social support as it relates to daily exercise behavior. Forty-six WTBC were matched (23 pairs) and completed pre-screening survey assessing eligibility and baseline levels of exercise. Participants were given Fitbit devices to track physical activity behavior and completed daily surveys across 3 weeks assessing perceptions of exercise-related social support at fixed times at the end of each day., Results: Mixed models accounting for day of study, baseline support, and baseline exercise levels revealed that higher levels of daily exercise-related tangible social support were associated with more daily steps (b = 506, SE = 143) and more light physical activity (LPA) minutes (b = 7.01, SE = 3.15). Informational social support was associated with higher moderate to vigorous physical activity (MVPA) minutes (b = 3.18, SE = 1.60)., Conclusions: Overall, peer matching programs aimed at increasing exercise-related social support among WTBC might encourage exercise behaviors, especially among women who share exercise-specific information (e.g., benefits, type, activities)., (© 2023. The Author(s).)
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- 2023
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31. Prostate cancer peer navigation: an observational study on navigators' well-being, benefit finding, and program satisfaction.
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Vodermaier A, Kazanjian A, Soheilipour S, Flora P, Matthew A, and Bender JL
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- Male, Humans, Quality of Life, Emotions, Personal Satisfaction, Patient Navigation methods, Prostatic Neoplasms therapy
- Abstract
Purpose: The study investigated peer and caregiver navigators' motivations for providing support, i.e., benefit finding, their mental and physical health, and program satisfaction., Methods: A web-based peer navigation program was conducted for prostate cancer patients and caregivers over a 6-month time period. In a one-arm observational study, peer and caregiver navigators were asked to complete standardized mental health (Hospital Anxiety and Depression Scale, Cancer Worry Scale), quality of life (EQ-5D-5L, EQ-VAS), and social support (ENRICHD Social Support Instrument) scales pre- and post-intervention and questionnaires addressing motivations, benefits, and program satisfaction post-intervention., Results: Both peer and caregiver navigators reported very low anxiety and depressive symptoms across time. Cancer worry increased over time with 25% of participants exceeding the symptom threshold at baseline and 33% at follow-up. Quality of life was very high but slightly decreased over time (90.0% vs. 84.4%; p = .005), indicative of a greater number of navigators reporting pain/discomfort at follow-up. Social support was high (86.9% vs. 85.9%) and remained so. Top five role endorsements were (1) a feeling of belonging, (2) being involved in something good, (3) giving back, (4) feeling better as a person, and (5) improved communication skills. Program satisfaction was very high with support from program staff rated highest., Conclusions: The study indicates that peer and caregiver navigators exhibited favorable physical and mental health across time. Furthermore, they experienced several benefits from navigation including a sense of meaning and the wish to give back. Results suggest that support provision within the peer and caregiver navigation program has also salutary effects for navigators., (© 2023. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)
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- 2023
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32. Implementation of a Web-Based Communication System for Primary Care Providers and Cancer Specialists.
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Petrovic B, Bender JL, Liddy C, Afkham A, McGee SF, Morgan SC, Segal R, O'Brien MA, Julian JA, Sussman J, Urquhart R, Fitch M, Schneider ND, and Grunfeld E
- Subjects
- Female, Humans, Male, Breast Neoplasms, Cancer Survivors, Colorectal Neoplasms, Electronic Health Records instrumentation, Electronic Health Records organization & administration, Health Care Surveys, Nurse Practitioners, Nurses, Prostatic Neoplasms, Random Allocation, Attitude of Health Personnel, Digital Technology methods, Digital Technology organization & administration, Internet Access statistics & numerical data, Oncologists organization & administration, Physicians, Primary Care organization & administration
- Abstract
Healthcare providers have reported challenges with coordinating care for patients with cancer. Digital technology tools have brought new possibilities for improving care coordination. A web- and text-based asynchronous system (eOncoNote) was implemented in Ottawa, Canada for cancer specialists and primary care providers (PCPs). This study aimed to examine PCPs' experiences of implementing eOncoNote and how access to the system influenced communication between PCPs and cancer specialists. As part of a larger study, we collected and analyzed system usage data and administered an end-of-discussion survey to understand the perceived value of using eOncoNote. eOncoNote data were analyzed for 76 shared patients (33 patients receiving treatment and 43 patients in the survivorship phase). Thirty-nine percent of the PCPs responded to the cancer specialist's initial eOncoNote message and nearly all of those sent only one message. Forty-five percent of the PCPs completed the survey. Most PCPs reported no additional benefits of using eOncoNote and emphasized the need for electronic medical record (EMR) integration. Over half of the PCPs indicated that eOncoNote could be a helpful service if they had questions about a patient. Future research should examine opportunities for EMR integration and whether additional interventions could support communication between PCPs and cancer specialists.
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- 2023
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33. Web-Based Asynchronous Tool to Facilitate Communication Between Primary Care Providers and Cancer Specialists: Pragmatic Randomized Controlled Trial.
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Petrovic B, Julian JA, Liddy C, Afkham A, McGee SF, Morgan SC, Segal R, Sussman J, Pond GR, O'Brien MA, Bender JL, and Grunfeld E
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- Male, Humans, Continuity of Patient Care, Communication, Internet, Breast Neoplasms therapy, Prostatic Neoplasms
- Abstract
Background: Cancer poses a significant global health burden. With advances in screening and treatment, there are now a growing number of cancer survivors with complex needs, requiring the involvement of multiple health care providers. Previous studies have identified problems related to communication and care coordination between primary care providers (PCPs) and cancer specialists., Objective: This study aimed to examine whether a web- and text-based asynchronous system (eOncoNote) could facilitate communication between PCPs and cancer specialists (oncologists and oncology nurses) to improve patient-reported continuity of care among patients receiving treatment or posttreatment survivorship care., Methods: In this pragmatic randomized controlled trial, a total of 173 patients were randomly assigned to either the intervention group (eOncoNote plus usual methods of communication between PCPs and cancer specialists) or a control group (usual communication only), including 104 (60.1%) patients in the survivorship phase (breast and colorectal cancer) and 69 (39.9%) patients in the treatment phase (breast and prostate cancer). The primary outcome was patient-reported team and cross-boundary continuity (Nijmegen Continuity Questionnaire). Secondary outcome measures included the Generalized Anxiety Disorder Screener (GAD-7), Patient Health Questionnaire on Major Depression, and Picker Patient Experience Questionnaire. Patients completed the questionnaires at baseline and at 2 points following randomization. Patients in the treatment phase completed follow-up questionnaires at 1 month and at either 4 months (patients with prostate cancer) or 6 months following randomization (patients with breast cancer). Patients in the survivorship phase completed follow-up questionnaires at 6 months and at 12 months following randomization., Results: The results did not show an intervention effect on the primary outcome of team and cross-boundary continuity of care or on the secondary outcomes of depression and patient experience with their health care. However, there was an intervention effect on anxiety. In the treatment phase, there was a statistically significant difference in the change score from baseline to the 1-month follow-up for GAD-7 (mean difference -2.3; P=.03). In the survivorship phase, there was a statistically significant difference in the change score for GAD-7 between baseline and the 6-month follow-up (mean difference -1.7; P=.03) and between baseline and the 12-month follow-up (mean difference -2.4; P=.004)., Conclusions: PCPs' and cancer specialists' access to eOncoNote is not significantly associated with patient-reported continuity of care. However, PCPs' and cancer specialists' access to the eOncoNote intervention may be a factor in reducing patient anxiety., Trial Registration: ClinicalTrials.gov NCT03333785; https://clinicaltrials.gov/ct2/show/NCT03333785., (©Bojana Petrovic, Jim A Julian, Clare Liddy, Amir Afkham, Sharon F McGee, Scott C Morgan, Roanne Segal, Jonathan Sussman, Gregory R Pond, Mary Ann O'Brien, Jacqueline L Bender, Eva Grunfeld. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 18.01.2023.)
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- 2023
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34. Exploring Peer Support Characteristics for Promoting Physical Activity Among Women Living Beyond a Cancer Diagnosis: A Qualitative Descriptive Study.
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Sabiston CM, Fong AJ, Smith-Turchyn J, Amireault S, Arbour-Nicitopoulos KP, Bender JL, and Jones JM
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- Adult, Female, Humans, Qualitative Research, Exercise, Medical Oncology, Focus Groups, Neoplasms diagnosis
- Abstract
Purpose: To explore women's perceptions of and preferred peer characteristics for peer mentoring to support physical activity promotion. Understanding how women living beyond a cancer diagnosis perceive peers for physical activity may help guide further health behavior mentoring and support practices., Participants & Setting: 16 English-speaking adult women living beyond a cancer diagnosis., Methodologic Approach: Following a qualitative descriptive approach, four in-person focus groups were conducted and discussions were analyzed using inductive content analysis., Findings: Participants described four considerations for peer matching: (a) personal characteristics, (b) physical activity characteristics, (c) cancer characteristics, and (d) finding a peer. Similarities in age, life phase, location, history of physical activity, type of cancer, severity of cancer, and personality were integral. An online or mobile application and the ability to create multiple partnerships were preferred., Implications for Nursing: Understanding methods to promote physical activity is imperative for long-term survivorship outcomes. Nurses in oncology care settings may promote physical activity and social support for women living beyond cancer diagnoses by facilitating optimal peer matches.
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- 2022
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35. Patient and Healthcare Provider Perspectives on the Implementation of a Web-Based Clinical Communication System for Cancer: A Qualitative Study.
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Petrovic B, O'Brien MA, Liddy C, Afkham A, McGee SF, Morgan SC, Segal R, Bender JL, Sussman J, Urquhart R, Fitch M, Schneider ND, and Grunfeld E
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- Male, Humans, Qualitative Research, Communication, Internet, Health Personnel, Neoplasms
- Abstract
Previous research has identified communication and care coordination problems for patients with cancer. Healthcare providers (HCPs) have reported communication issues due to the incompatibility of electronic medical records (EMR) software and not being consistently copied on patient reports. We evaluated an asynchronous web-based communication system ("eOncoNote") for primary care providers and cancer specialists to improve cancer care coordination. The objectives were to examine patients' perceptions of the role of eOncoNote in their healthcare, and HCPs' experiences of implementing eOncoNote. Qualitative interviews were conducted with patients with breast and prostate cancer, primary care providers, and cancer specialists. Eighteen patients and fourteen HCPs participated. Six themes were identified from the patient interviews focusing on HCP and patient roles related to care coordination and patient awareness of communication among their HCPs. Four themes were identified from HCP interviews related to the context of care coordination and experience with eOncoNote. Both patients and HCPs described the important role patients and caregivers play in care coordination. The results show that patients were often unaware of the communication between their HCPs and assumed they were communicating. HCPs encountered challenges incorporating eOncoNote into their workflow.
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- 2022
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36. Prostate cancer incidence among immigrant men in Ontario, Canada: a population-based retrospective cohort study.
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Lofters AK, Bender JL, Swayze S, Alibhai S, Henry A, Noel K, and Datta GD
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- Male, Humans, Incidence, Retrospective Studies, Ontario epidemiology, Cohort Studies, Emigrants and Immigrants, Prostatic Neoplasms
- Abstract
Background: Prostate cancer incidence has been associated with various sociodemographic factors, such as race, income and age, but the association with immigrant status in Canada is unclear. In this population-based study in Ontario, Canada, we compared age-standardized incidence rates for immigrant males from various regions of origin with the rates of long-term residents., Methods: In this retrospective cohort study, we linked several provincial-level databases available at ICES, an independent, non-profit research institute. We included all males aged 20 years and older in the province of Ontario eligible for health care for each fiscal year (Apr. 1 to Mar. 31) in 2008-2016. We determined age-standardized prostate cancer incidence rates, stratifying by immigrant status (a binary variable) and region of origin. We used a log-binomial model to estimate adjusted incidence rate ratios, with long-term residents (Canadian-born Ontarians as well as those who immigrated before 1985, when available data on immigration starts) as the reference group. We included age, neighbourhood income and time since landing in the models. Additional models limited to immigrant males in the cohort included immigration admission category (economic class, family class, refugee, other) and time since landing in Canada., Results: There were 74594 incident cases of prostate cancer in the study period, 6742 of which were among immigrant males. Males who had immigrated from West Africa and the Caribbean had significantly higher incidence of prostate cancer than other immigrants and long-term residents: adjusted rate ratios of 2.71 (95% confidence interval [CI] 2.41-3.05) and 1.91 (95% CI 1.78-2.04), respectively. Immigrants from other regions, including East Africa and Middle-Southern Africa, had lower or similar incidence rates to long-term residents. Males from South Asia had the lowest adjusted rate ratio (0.47, 95% CI 0.45-0.50)., Interpretation: The age-standardized incidence rate of prostate cancer from 2008 to 2016 was consistently and significantly higher among immigrants from West African and Caribbean countries than among other immigrants and long-term residents of the province. Future research in Canada should focus on further understanding heterogeneity in prostate cancer risk and epidemiology, including stage of diagnosis and mortality, for immigrants., Competing Interests: Competing interests: Aisha Lofters declares an operating grant paid to her institution from the Canadian Institutes of Health Research (grant no. 162506) and a paid role as provincial primary care lead, cancer screening with Ontario Health (Cancer Care Ontario). Anthony Henry is first vice president of The Walnut Foundation. Ken Noel is president of The Walnut Foundation. No other competing interests were declared., (© 2022 CMA Impact Inc. or its licensors.)
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- 2022
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37. Molecular profiling identifies targeted therapy opportunities in pediatric solid cancer.
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Church AJ, Corson LB, Kao PC, Imamovic-Tuco A, Reidy D, Doan D, Kang W, Pinto N, Maese L, Laetsch TW, Kim A, Colace SI, Macy ME, Applebaum MA, Bagatell R, Sabnis AJ, Weiser DA, Glade-Bender JL, Homans AC, Hipps J, Harris H, Manning D, Al-Ibraheemi A, Li Y, Gupta H, Cherniack AD, Lo YC, Strand GR, Lee LA, Pinches RS, Lazo De La Vega L, Harden MV, Lennon NJ, Choi S, Comeau H, Harris MH, Forrest SJ, Clinton CM, Crompton BD, Kamihara J, MacConaill LE, Volchenboum SL, Lindeman NI, Van Allen E, DuBois SG, London WB, and Janeway KA
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- Adolescent, Adult, Biomarkers, Tumor genetics, Child, Child, Preschool, Genomics, Humans, Infant, Infant, Newborn, Molecular Targeted Therapy methods, Prospective Studies, Young Adult, High-Throughput Nucleotide Sequencing methods, Neoplasms drug therapy, Neoplasms genetics, Neoplasms pathology
- Abstract
To evaluate the clinical impact of molecular tumor profiling (MTP) with targeted sequencing panel tests, pediatric patients with extracranial solid tumors were enrolled in a prospective observational cohort study at 12 institutions. In the 345-patient analytical population, median age at diagnosis was 12 years (range 0-27.5); 298 patients (86%) had 1 or more alterations with potential for impact on care. Genomic alterations with diagnostic, prognostic or therapeutic significance were present in 61, 16 and 65% of patients, respectively. After return of the results, impact on care included 17 patients with a clarified diagnostic classification and 240 patients with an MTP result that could be used to select molecularly targeted therapy matched to identified alterations (MTT). Of the 29 patients who received MTT, 24% had an objective response or experienced durable clinical benefit; all but 1 of these patients received targeted therapy matched to a gene fusion. Of the diagnostic variants identified in 209 patients, 77% were gene fusions. MTP with targeted panel tests that includes fusion detection has a substantial clinical impact for young patients with solid tumors., (© 2022. The Author(s), under exclusive licence to Springer Nature America, Inc.)
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- 2022
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38. Peer Support Needs of Adolescents with Cancer in Pediatrics: A Canadian Mixed Methods Study.
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Weidman DR, Desmarais P, Stevens K, Klinger CA, Colquhoun H, Bender JL, and Gupta A
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- Adolescent, Canada, Child, Emotions, Humans, Social Support, Surveys and Questionnaires, Neoplasms therapy, Social Media
- Abstract
Adolescents with cancer (AWC) in pediatrics may not have adequate opportunities for peer support. This mixed methods study aimed to characterize peer support needs of AWC during or shortly after treatment. Ten AWC with median age 16.5 (range 14-18) years completed a survey and semistructured interview. Three themes were apparent: cancer journey difficulties, current support system, and peer support perspectives. Participants felt incompletely understood by existing supports, lacked connection with other AWC, and craved experiential information. Peer support interventions should be flexible, facilitate various interactions, and include social media. The next step is to implement and evaluate an intervention.
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- 2022
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39. Web-Based Peer Navigation for Men with Prostate Cancer and Their Family Caregivers: A Pilot Feasibility Study.
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Bender JL, Flora PK, Soheilipour S, Dirlea M, Maharaj N, Parvin L, Matthew A, Catton C, Jamnicky L, Pollock P, Kwan W, Finelli A, and Kazanjian A
- Subjects
- Canada, Feasibility Studies, Humans, Internet, Male, Peer Group, Quality of Life, Caregivers, Patient Navigation, Prostatic Neoplasms therapy
- Abstract
This study assessed the feasibility, acceptability and potential effects of True North Peer Navigation (PN)—a web-based peer navigation program for men with prostate cancer (PC) and their family caregivers. A one-arm, pre-post pilot feasibility study was conducted at two cancer centres in Canada. Participants were matched through a web-app with a specially trained peer navigator who assessed needs and barriers to care, provided support and encouraged a proactive approach to health for 3 months. Descriptive statistics were calculated, along with paired t-tests. True North PN was feasible, with 57.9% (84/145) recruitment, 84.5% (71/84) pre-questionnaire, 77.5% (55/71) app registration, 92.7% (51/55) match and 66.7% (34/51) post-questionnaire completion rates. Mean satisfaction with Peer Navigators was 8.4/10 (SD 2.15), mean program satisfaction was 6.8/10 (SD 2.9) and mean app usability was 60/100 (SD 14.8). At 3 months, mean ± SE patient/caregiver activation had improved by 11.5 ± 3.4 points (p = 0.002), patient quality of life by 1.1 ± 0.2 points (p < 0.0001), informational support by 0.4 ± 0.17 points (p = 0.03), practical support by 0.5 ± 0.25 points (p = 0.04) and less need for support related to fear of recurrence among patients by 0.4 ± 19 points (p = 0.03). The True North web-based peer navigation program is highly feasible and acceptable among PC patients and caregivers, and the associated improvements in patient and caregiver activation are promising. A randomized controlled trial is warranted to determine effectiveness.
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- 2022
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40. Clinical sequencing of soft tissue and bone sarcomas delineates diverse genomic landscapes and potential therapeutic targets.
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Nacev BA, Sanchez-Vega F, Smith SA, Antonescu CR, Rosenbaum E, Shi H, Tang C, Socci ND, Rana S, Gularte-Mérida R, Zehir A, Gounder MM, Bowler TG, Luthra A, Jadeja B, Okada A, Strong JA, Stoller J, Chan JE, Chi P, D'Angelo SP, Dickson MA, Kelly CM, Keohan ML, Movva S, Thornton K, Meyers PA, Wexler LH, Slotkin EK, Glade Bender JL, Shukla NN, Hensley ML, Healey JH, La Quaglia MP, Alektiar KM, Crago AM, Yoon SS, Untch BR, Chiang S, Agaram NP, Hameed MR, Berger MF, Solit DB, Schultz N, Ladanyi M, Singer S, and Tap WD
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- Genomics, Humans, Bone Neoplasms, Osteosarcoma, Sarcoma drug therapy, Sarcoma therapy, Soft Tissue Neoplasms genetics
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The genetic, biologic, and clinical heterogeneity of sarcomas poses a challenge for the identification of therapeutic targets, clinical research, and advancing patient care. Because there are > 100 sarcoma subtypes, in-depth genetic studies have focused on one or a few subtypes. Herein, we report a comparative genetic analysis of 2,138 sarcomas representing 45 pathological entities. This cohort is prospectively analyzed using targeted sequencing to characterize subtype-specific somatic alterations in targetable pathways, rates of whole genome doubling, mutational signatures, and subtype-agnostic genomic clusters. The most common alterations are in cell cycle control and TP53, receptor tyrosine kinases/PI3K/RAS, and epigenetic regulators. Subtype-specific associations include TERT amplification in intimal sarcoma and SWI/SNF alterations in uterine adenosarcoma. Tumor mutational burden, while low compared to other cancers, varies between and within subtypes. This resource will improve sarcoma models, motivate studies of subtype-specific alterations, and inform investigations of genetic factors and their correlations with treatment response., (© 2022. The Author(s).)
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- 2022
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41. Peer Support Needs and Preferences for Digital Peer Navigation among Adolescent and Young Adults with Cancer: A Canadian Cross-Sectional Survey.
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Bender JL, Puri N, Salih S, D'Agostino NM, Tsimicalis A, Howard AF, Garland SN, Chalifour K, Drake EK, Marrato A, McKean NL, and Gupta AA
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- Adolescent, Adult, Canada, Cross-Sectional Studies, Female, Humans, Young Adult, Neoplasms psychology, Neoplasms therapy
- Abstract
Adolescents and young adults (AYA) with cancer desire peer support and require support programs that address their unique needs. This study investigated the need for, and barriers to, peer support and preferences for digital peer navigation among AYA. A cross-sectional survey was administered to AYA, diagnosed with cancer between the ages of 15-39, at a cancer center and through social media. Descriptive summary statistics were calculated. Participants ( n = 436) were on average 31.2 years (SD = 6.3), 3.3 years since-diagnosis (SD = 3.8), and 65% ( n = 218) were women. Over three-quaters ( n = 291, 76.6%) desired peer support from cancer peers, but 41.4% ( n = 157) had not accessed peer support. Main access barriers were: Inconvenience of in-person support groups ( n = 284, 76.1%), finding AYA with whom they could relate ( n = 268, 72.4%), and finding AYA-specific support programs ( n = 261, 70.4%). Eighty-two percent ( n = 310) desired support from a peer navigator through a digital app, and 63% ( n = 231) were interested in being a peer navigator. Participants indicated a greater need for emotional ( n = 329, 90.1%) and informational support ( n = 326, 89.1%) than companionship ( n = 284, 78.0%) or practical support ( n = 269, 73.6%) from a peer navigator. Foremost peer matching characteristics were cancer-type ( n = 329, 88.4%), specific concerns ( n = 317, 86.1%), and age-at-diagnosis ( n = 316, 86.1%). A digital peer navigation program was desired by over 80% of a large Canadian sample of AYA and could potentially overcome the barriers AYA experience in accessing peer support. The design of a peer navigation program for AYA should consider the matching characteristics and multidimensional support needs of AYA.
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- 2022
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42. Psychosocial Needs and Preferences for Care among Adolescent and Young Adult Cancer Patients (Ages 15-39): A Qualitative Study.
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Avutu V, Lynch KA, Barnett ME, Vera JA, Glade Bender JL, Tap WD, and Atkinson TM
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Adolescents and young adults (AYAs) require a multidisciplinary approach to cancer care due to their complex biopsychosocial situations and varied developmental maturity. Currently, age and diagnosis determine referral to pediatric or adult oncology, with differing treatment paradigms and service utilization patterns, contributing to suboptimal improvements in outcomes. Understanding the unique perspectives of AYAs is essential to designing patient-centered AYA services. Thus, we conducted six focus groups with AYAs ( n = 25) treated by medical or pediatric oncologists to evaluate: (1) the unique experiences of cancer care as an AYA; (2) AYA-specific information needs and communication preferences; and (3) recommendations for service provision, delivery and accommodations for AYAs. Transcripts were analyzed using inductive thematic content analysis and identified six major themes to inform clinically-actionable recommendations and the development of a patient-reported outcome measure: (1) AYAs experience social isolation and loss of independence; (2) AYAs have an uncertain sense of the future and need conversations around survivorship and long-term and late effects; (3) AYAs desire greater control over discussions with their care team; (4) AYAs need additional navigational and social/caregiver supports; (5) AYAs prefer an inclusive AYA space in the hospital; and (6) LGBTQ+ patients experience distinct concerns as AYA cancer patients. These will form the basis for specific and tailored clinical recommendations to improve AYA cancer care delivery.
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- 2022
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43. Germline Sequencing Improves Tumor-Only Sequencing Interpretation in a Precision Genomic Study of Patients With Pediatric Solid Tumor.
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Schienda J, Church AJ, Corson LB, Decker B, Clinton CM, Manning DK, Imamovic-Tuco A, Reidy D, Strand GR, Applebaum MA, Bagatell R, DuBois SG, Glade-Bender JL, Kang W, Kim A, Laetsch TW, Macy ME, Maese L, Pinto N, Sabnis AJ, Schiffman JD, Colace SI, Volchenboum SL, Weiser DA, Nowak JA, Lindeman NI, Janeway KA, Crompton BD, and Kamihara J
- Subjects
- Adolescent, Adult, Child, Child, Preschool, Female, Genetic Predisposition to Disease genetics, Humans, Infant, Male, Precision Medicine methods, Precision Medicine standards, Precision Medicine trends, Whole Genome Sequencing methods, Whole Genome Sequencing statistics & numerical data, Neoplasms genetics, Whole Genome Sequencing standards
- Abstract
Purpose: Molecular tumor profiling is becoming a routine part of clinical cancer care, typically involving tumor-only panel testing without matched germline. We hypothesized that integrated germline sequencing could improve clinical interpretation and enhance the identification of germline variants with significant hereditary risks., Materials and Methods: Tumors from pediatric patients with high-risk, extracranial solid malignancies were sequenced with a targeted panel of cancer-associated genes. Later, germline DNA was analyzed for a subset of these genes. We performed a post hoc analysis to identify how an integrated analysis of tumor and germline data would improve clinical interpretation., Results: One hundred sixty participants with both tumor-only and germline sequencing reports were eligible for this analysis. Germline sequencing identified 38 pathogenic or likely pathogenic variants among 35 (22%) patients. Twenty-five (66%) of these were included in the tumor sequencing report. The remaining germline pathogenic or likely pathogenic variants were single-nucleotide variants filtered out of tumor-only analysis because of population frequency or copy-number variation masked by additional copy-number changes in the tumor. In tumor-only sequencing, 308 of 434 (71%) single-nucleotide variants reported were present in the germline, including 31% with suggested clinical utility. Finally, we provide further evidence that the variant allele fraction from tumor-only sequencing is insufficient to differentiate somatic from germline events., Conclusion: A paired approach to analyzing tumor and germline sequencing data would be expected to improve the efficiency and accuracy of distinguishing somatic mutations and germline variants, thereby facilitating the process of variant curation and therapeutic interpretation for somatic reports, as well as the identification of variants associated with germline cancer predisposition., Competing Interests: Alanna J. Church Honoraria: The Jackson Laboratory Consulting or Advisory Role: AlphaSights, The Jackson Laboratory, Bayer Travel, Accommodations, Expenses: Bayer Laura B. Corson Employment: Sema4 Stock and Other Ownership Interests: Alnylam, Inovio Pharmaceuticals, Agios Consulting or Advisory Role: Biomatics Patents, Royalties, Other Intellectual Property: Patent from work done at H3 Biomedicine before 2016 Brennan Decker Employment: Foundation Medicine Stock and Other Ownership Interests: Avidea Technologies, Roche Consulting or Advisory Role: Foundation Medicine, Avidea Technologies Catherine M. Clinton Employment: Helix OpCo LLC Mark A. Applebaum Consulting or Advisory Role: Fennec Pharma Rochelle Bagatell Uncompensated Relationships: Ymabs Therapeutics Inc Steven G. DuBois Consulting or Advisory Role: Bayer, Amgen Research Funding: Merck (Inst), Roche/Genentech (Inst), Lilly (Inst), Curis (Inst), Loxo (Inst), BMS (Inst), Eisai (Inst), Pfizer (Inst), Turning Point Therapeutics (Inst), Bayer (Inst), Salarius Pharmaceuticals (Inst) Travel, Accommodations, Expenses: Roche/Genentech, Salarius Pharmaceuticals Uncompensated Relationships: Ymabs Therapeutics Inc Julia L. Glade-Bender Research Funding: Eisai (Inst), Lilly (Inst), Loxo (Inst), Roche/Genentech (Inst), Bayer (Inst) Patents, Royalties, Other Intellectual Property: Patent on a T lympboblastic lymphoma cell line, CUTLL1 Travel, Accommodations, Expenses: Amgen (Inst) Uncompensated Relationships: SpringWorks Therapeutics, Bristol Myers Squibb, Merck, Eisai Open Payments Link: https://openpaymentsdata.cms.gov/physician/708514 AeRang Kim Research Funding: Esai (Inst); AstraZeneca (Inst); Oncternal (Inst); Ascentage (Inst); BioAlta (Inst). Theodore W. Laetsch Consulting or Advisory Role: Novartis, Bayer, Cellectis, Aptitude Health, Clinical Education Alliance, Deciphera, Jumo Health, Massive Bio, Med Learning Group, Medscape, Physicans' Education Resource, Y-mAbs Therapeutics Research Funding: Pfizer (Inst), Novartis (Inst), Bayer (Inst), AbbVie (Inst), Amgen (Inst), Atara Biotherapeutics (Inst), Bristol Myers Squibb (Inst), Lilly (Inst), Epizyme (Inst), GlaxoSmithKline (Inst), Janssen (Inst), Jubilant Pharmaceuticals (Inst), Novella Clinical (Inst), Servier (Inst), Foundation Medicine (Inst), Merck Sharp & Dohme (Inst) Margaret E. Macy Stock and Other Ownership Interests: Johnson & Johnson, GE Healthcare, Varian Medical Systems Consulting or Advisory Role: Ymabs Therapeutics Inc Research Funding: Bayer (Inst), Ignyta (Inst), Roche (Inst), Lilly (Inst), Merck (Inst), Oncternal Therapeutics Inc (Inst), AbbVie (Inst), Jubilant DraxImage (Inst), Actuate Therapeutics (Inst) Patents, Royalties, Other Intellectual Property: Patent for non-invasive methods of leukemia cell detection with MRI/MRS—Patent No. 8894975 Luke Maese Honoraria: Jazz Pharmaceuticals Consulting or Advisory Role: Jazz Pharmaceuticals Amit J. Sabnis Consulting or Advisory Role: Cardinal Health Joshua D. Schiffman Employment: PEEL Therapeutics Leadership: PEEL Therapeutics Stock and Other Ownership Interests: ItRunsInMyFamily.com, PEEL Therapeutics Honoraria: Affymetrix Consulting or Advisory Role: N-of-One, Fabric Genomics Samuel L. Volchenboum Stock and Other Ownership Interests: Litmus Health Consulting or Advisory Role: Accordant Travel, Accommodations, Expenses: Sanford Health Daniel A. Weiser Consulting or Advisory Role: Illumina Radiopharmaceuticals Jonathan A. Nowak Research Funding: NanoString Technologies, Illumina Katherine A. Janeway Honoraria: Foundation Medicine, Takeda Consulting or Advisory Role: Bayer, Ipsen Travel, Accommodations, Expenses: Bayer Brian D. Crompton Employment: Acceleron Pharma (I) Stock and Other Ownership Interests: Acceleron Pharma (I) Research Funding: Gradalis Junne Kamihara Stock and Other Ownership Interests: PanTher Therapeutics (I), ROME Therapeutics (I), TellBio (I) Honoraria: Pfizer (I), NanoString Technologies (I), Foundation Medicine (I), Ikena Oncology (I) Consulting or Advisory Role: ROME Therapeutics (I), Third Rock Ventures (I), Tekla Capital Management (I) Research Funding: PureTech (I), Ribon Therapeutics (I), ACD Biotechne (I) Patents, Royalties, Other Intellectual Property: Patent on drug delivery device licensed to PanTher Therapeutics (I), Patents on Repeat RNA biomarkers and therapeutics licensed to Rome Therapeutics (I), Patents on Circulating Tumor Cell Biomarkers Licensed to TellBio Inc (I) No other potential conflicts of interest were reported. Alanna J. Church Honoraria: The Jackson Laboratory Consulting or Advisory Role: AlphaSights, The Jackson Laboratory, Bayer Travel, Accommodations, Expenses: Bayer Laura B. Corson Employment: Sema4 Stock and Other Ownership Interests: Alnylam, Inovio Pharmaceuticals, Agios Consulting or Advisory Role: Biomatics Patents, Royalties, Other Intellectual Property: Patent from work done at H3 Biomedicine before 2016 Brennan Decker Employment: Foundation Medicine Stock and Other Ownership Interests: Avidea Technologies, Roche Consulting or Advisory Role: Foundation Medicine, Avidea Technologies Catherine M. Clinton Employment: Helix OpCo LLC Mark A. Applebaum Consulting or Advisory Role: Fennec Pharma Rochelle Bagatell Uncompensated Relationships: Ymabs Therapeutics Inc Steven G. DuBois Consulting or Advisory Role: Bayer, Amgen Research Funding: Merck (Inst), Roche/Genentech (Inst), Lilly (Inst), Curis (Inst), Loxo (Inst), BMS (Inst), Eisai (Inst), Pfizer (Inst), Turning Point Therapeutics (Inst), Bayer (Inst), Salarius Pharmaceuticals (Inst) Travel, Accommodations, Expenses: Roche/Genentech, Salarius Pharmaceuticals Uncompensated Relationships: Ymabs Therapeutics Inc Julia L. Glade-Bender Research Funding: Eisai (Inst), Lilly (Inst), Loxo (Inst), Roche/Genentech (Inst), Bayer (Inst) Patents, Royalties, Other Intellectual Property: Patent on a T lympboblastic lymphoma cell line, CUTLL1 Travel, Accommodations, Expenses: Amgen (Inst) Uncompensated Relationships: SpringWorks Therapeutics, Bristol Myers Squibb, Merck, Eisai Open Payments Link: https://openpaymentsdata.cms.gov/physician/708514 AeRang Kim Research Funding: Esai (Inst); AstraZeneca (Inst); Oncternal (Inst); Ascentage (Inst); BioAlta (Inst). Theodore W. Laetsch Consulting or Advisory Role: Novartis, Bayer, Cellectis, Aptitude Health, Clinical Education Alliance, Deciphera, Jumo Health, Massive Bio, Med Learning Group, Medscape, Physicans' Education Resource, Y-mAbs Therapeutics Research Funding: Pfizer (Inst), Novartis (Inst), Bayer (Inst), AbbVie (Inst), Amgen (Inst), Atara Biotherapeutics (Inst), Bristol Myers Squibb (Inst), Lilly (Inst), Epizyme (Inst), GlaxoSmithKline (Inst), Janssen (Inst), Jubilant Pharmaceuticals (Inst), Novella Clinical (Inst), Servier (Inst), Foundation Medicine (Inst), Merck Sharp & Dohme (Inst) Margaret E. Macy Stock and Other Ownership Interests: Johnson & Johnson, GE Healthcare, Varian Medical Systems Consulting or Advisory Role: Ymabs Therapeutics Inc Research Funding: Bayer (Inst), Ignyta (Inst), Roche (Inst), Lilly (Inst), Merck (Inst), Oncternal Therapeutics Inc (Inst), AbbVie (Inst), Jubilant DraxImage (Inst), Actuate Therapeutics (Inst) Patents, Royalties, Other Intellectual Property: Patent for non-invasive methods of leukemia cell detection with MRI/MRS—Patent No. 8894975 Luke Maese Honoraria: Jazz Pharmaceuticals Consulting or Advisory Role: Jazz Pharmaceuticals Amit J. Sabnis Consulting or Advisory Role: Cardinal Health Joshua D. Schiffman Employment: PEEL Therapeutics Leadership: PEEL Therapeutics Stock and Other Ownership Interests: ItRunsInMyFamily.com, PEEL Therapeutics Honoraria: Affymetrix Consulting or Advisory Role: N-of-One, Fabric Genomics Samuel L. Volchenboum Stock and Other Ownership Interests: Litmus Health Consulting or Advisory Role: Accordant Travel, Accommodations, Expenses: Sanford Health Daniel A. Weiser Consulting or Advisory Role: Illumina Radiopharmaceuticals Jonathan A. Nowak Research Funding: NanoString Technologies, Illumina Katherine A. Janeway Honoraria: Foundation Medicine, Takeda Consulting or Advisory Role: Bayer, Ipsen Travel, Accommodations, Expenses: Bayer Brian D. Crompton Employment: Acceleron Pharma (I) Stock and Other Ownership Interests: Acceleron Pharma (I) Research Funding: Gradalis Junne Kamihara Stock and Other Ownership Interests: PanTher Therapeutics (I), ROME Therapeutics (I), TellBio (I) Honoraria: Pfizer (I), NanoString Technologies (I), Foundation Medicine (I), Ikena Oncology (I) Consulting or Advisory Role: ROME Therapeutics (I), Third Rock Ventures (I), Tekla Capital Management (I) Research Funding: PureTech (I), Ribon Therapeutics (I), ACD Biotechne (I) Patents, Royalties, Other Intellectual Property: Patent on drug delivery device licensed to PanTher Therapeutics (I), Patents on Repeat RNA biomarkers and therapeutics licensed to Rome Therapeutics (I), Patents on Circulating Tumor Cell Biomarkers Licensed to TellBio Inc (I) No other potential conflicts of interest were reported., (© 2021 by American Society of Clinical Oncology.)
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- 2021
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44. Establishing best practices in cancer online support groups: protocol for a realist review.
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Bender JL, Babinski S, Wong G, Tricco AC, Englesakis M, Cyr AB, Potts H, Perski O, Esplen MJ, Young C, Wassersug R, Forster V, Papadakos J, Soobiah C, Fox C, Gothard-Huang A, and Witteman H
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- Humans, Review Literature as Topic, Self-Help Groups, Translational Science, Biomedical, Neoplasms therapy, Self-Management
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Introduction: Considerable observational evidence suggests that cancer online support groups reduce feelings of isolation, depression and anxiety, enhance coping and self-management, and lead to better informed patients. Other studies indicate that cancer online support groups can increase distress. Yet no studies theorise the complex, context-dependent mechanisms by which cancer online support groups generate their-sometimes contrasting-outcomes., Methods and Analysis: Guided by an integrated knowledge translation approach and the strategy for patient-oriented research, we will conduct a realist review of cancer online support groups in partnership with stakeholders. We will follow Pawson's five steps and existing quality standards to develop a program theory that explains how cancer online support groups work, for whom and in what circumstances. The specific research questions will be: what positive and negative outcomes have been reported on cancer online support groups? What are the mechanisms that are associated with these outcomes, in which contexts and for whom? Through a rigorous review of relevant scientific and grey literature, as well as ongoing dialogue with stakeholders, a program theory will be developed to explain who benefits from cancer online support groups and who does not, what benefits they derive (or do not), and the factors that affect these outcomes., Ethics and Dissemination: The use of secondary data for this review precludes the need for ethical approval. Dissemination will be informed by the knowledge-to-action framework and will consist of tailored knowledge products that are conceived of collaboratively with stakeholders. These will include peer-reviewed publications on how cancer online support groups can be optimised and best practice recommendations to maximise the benefits experienced by people with cancer. These traditional scientific outputs, along with their respective evidence summaries, will be amplified through strategic social media events hosted and promoted by knowledge users., Prospero Registration Number: CRD42021250046., Competing Interests: Competing interests: GW is deputy chair of the UK’s National Institute for Health Research’s Health Technology Assessment Prioritisation Committee: Integrated Community Health and Social Care (Panel A)., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
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- 2021
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45. Connecting breast cancer survivors for exercise: protocol for a two-arm randomized controlled trial.
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Smith-Turchyn J, McCowan ME, O'Loughlin E, Fong AJ, McDonough MH, Santa Mina D, Arbour-Nicitopoulos KP, Trinh L, Jones JM, Bender JL, Culos-Reed SN, Tomasone JR, Vani MF, and Sabiston CM
- Abstract
Background: Peer-based exercise interventions that cultivate new opportunities for support with a fellow cancer survivor may result in increased exercise volume. It is not clear whether adding qualified exercise professional (QEP) support to peer-based interventions improves health outcomes. Therefore, the purpose of this study is to determine whether breast cancer survivor (BCS) dyads who receive 10 weekly sessions of virtually delivered QEP support have improved outcomes compared to BCS dyads who do not receive QEP support., Methods: Participants Adult BCS with medical clearance for exercise, who have an internet-connected device, and currently engage in < 150 min of moderate-intensity exercise per week. Intervention BCS will be matched using evidence-based criteria. The intervention group will receive dyadic exercise information sessions and a program tailored by a QEP for 10 weeks (intervention period) and have access to the QEP for an additional 4 weeks (tapering period). The control will not receive any QEP support. Outcomes The primary outcome is post-intervention self-reported exercise volume. Secondary outcomes include device-assessed exercise volume (i.e., Fitbit), social support, and health-related quality of life. Randomization 108 participants, matched in dyads, will be randomized 1:1 to the MatchQEP or Match groups using a web-based scheme. Statistical analysis Outcomes will be measured at baseline, post-intervention, post-tapering, and at 12 weeks post-intervention follow-up., Discussion: The findings from this RCT will determine if matched BCS dyads who receive 10 weeks of virtually delivered QEP support have higher levels of self-report and device-measured exercise, social support, and health related quality of life compared to matched dyads without QEP-delivered exercise guidance. To our knowledge this will be the first study to assess the combined effect of peer- and QEP support on exercise volume. Project findings will inform and optimize intervention methods aimed to increase exercise among BCS through accessible exercise supports., Trial Registration: The study is registered on ClinicalTrials.gov (study identifier: NCT04771975, protocol Version Number: 2, date: July 22, 2021)., Competing Interests: Competing interestsThe authors declare that they have no competing interests., (© 2021. The Author(s).)
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- 2021
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46. Internet and social media use in cancer patients: association with distress and perceived benefits and limitations.
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Bender JL, Hueniken K, Eng L, Brown MC, Kassirian S, Geist I, Balaratnam K, Liang M, Paulo CB, Geist A, Rao P, Magony A, Smith EC, Xu W, Liu G, and Gupta AA
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- Canada, Cancer Survivors, Cross-Sectional Studies, Female, Humans, Internet, Male, Middle Aged, Surveys and Questionnaires, Neoplasms, Social Media
- Abstract
Objective: Cancer patients may turn to social media (SM) to cope with distress. We investigated associations between distress and internet/SM use for cancer information/support., Methods: Adult patients at a Canadian cancer centre completed a cross-sectional survey on sociodemographics, health status, use of cancer online resources and distress (EQ5D-5L). Statistical models adjusted for relevant variables., Results: Of 376 participants, median age was 52 years, time since diagnosis was 1.63 years, 272 (74%) had post-secondary education and 192 (51%) were female. For cancer information/support, 276 (73%) used internet and 147 (39%) SM. Dose response relationships were observed between distress and cancer-related internet (p = 0.02), and SM use (p < 0.001). Respondents using internet/SM for cancer information/support reported greater internet confidence (internet OR = 4.0, 95% CI: 1.9-8.3; SM OR = 4.18, 95%, CI: 1.9-11.3), higher education (internet OR = 3.0, 95% CI: 1.7-5.2; SM OR = 2.21, 95% CI: 1.2-4.1) and were more likely female (internet OR = 2.6, 95% CI 1.5-4.6; SM OR = 2.1, 95% CI: 1.3-3.4). For SM for cancer information/support, more used SM > 30 min daily (OR = 3.4; 95% CI: 2.1-5.7), and were distressed (OR = 1.67, 95% CI: 1.0-2.7). SM benefits were to learn about cancer (93; 25%), distract from cancer (85; 23%) and connect with survivors (81; 22%). SM limitations were privacy (161; 43%), quality (90; 24%) and personal applicability (85; 23%). Females used SM more to connect with survivors than males (p = 0.001)., Conclusions: Greater internet confidence, higher education and being female were associated with cancer-related internet/SM use. Distressed cancer patients were also more likely to turn to SM. Privacy concerns may limit SM use for coping. Future research should determine how to optimize SM in caring for and connecting with patients and reduce cancer-related distress., (© 2021. The Author(s), under exclusive licence to Springer-Verlag GmbH, DE part of Springer Nature.)
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- 2021
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47. Virtual care for prostate cancer survivorship: protocol for an evaluation of a nurse-led algorithm-enhanced virtual clinic implemented at five cancer centres across Canada.
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Pham Q, Hearn J, Bender JL, Berlin A, Brown I, Bryant-Lukosius D, Feifer AH, Finelli A, Gotto G, Hamilton R, Rendon R, and Cafazzo JA
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- Algorithms, Humans, Male, Nurse's Role, Ontario, Quality of Life, Prostatic Neoplasms therapy, Survivorship
- Abstract
Introduction: Prostate cancer (PCa) is the most common cancer in Canadian men. Current models of survivorship care are no longer adequate to address the chronic and complex survivorship needs of patients today. Virtual care models for cancer survivorship have recently been associated with comparable clinical outcomes and lower costs to traditional follow-up care, with patients favouring off-site and on-demand visits. Building on their viability, our research group conceived the Ned Clinic-a virtual PCa survivorship model that provides patients with access to lab results, collects patient-reported outcomes, alerts clinicians to emerging issues, and promotes patient self-care. Despite the promise of the Ned Clinic, the model remains limited by its dependence on oncology specialists, lack of an autonomous triage algorithm, and has only been implemented among PCa survivors living in Ontario., Methods and Analysis: Our programme of research comprises two main research objectives: (1) to evaluate the process and cost of implementing and sustaining five nurse-led virtual PCa survivorship clinics in three provinces across Canada and identify barriers and facilitators to implementation success and (2) to assess the impact of these virtual clinics on implementation and effectiveness outcomes of enrolled PCa survivors. The design phase will involve developing an autonomous triage algorithm and redesigning the Ned Clinic towards a nurse-led service model. Site-specific implementation plans will be developed to deploy a localised nurse-led virtual clinic at each centre. Effectiveness will be evaluated using a historical control study comparing the survivorship outcomes of 300 PCa survivors enrolled in the Ned Clinic with 300 PCa survivors receiving traditional follow-up care., Ethics and Dissemination: Appropriate site-specific ethics approval will be secured prior to each research phase. Knowledge translation efforts will include diffusion, dissemination, and application approaches to ensure that knowledge is translated to both academic and lay audiences., Competing Interests: Competing interests: All authors are involved in the design and development of the Ned prostate cancer survivorship virtual care model described in the manuscript. QP, AB, AHF, AF, RH and JAC own intellectual property rights to the Ned Clinic intervention and are entitled to personally benefit from any commercial use of the intellectual property., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
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- 2021
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48. Training prostate cancer survivors and caregivers to be peer navigators: a blended online/in-person competency-based training program.
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Bender JL, Flora PK, Milosevic E, Soheilipour S, Maharaj N, Dirlea M, Parvin L, Matthew A, and Kazanjian A
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- Aged, Cancer Survivors, Humans, Male, Prostatic Neoplasms mortality, Surveys and Questionnaires, Caregivers psychology, Competency-Based Education methods, Education, Distance methods, Prostatic Neoplasms psychology
- Abstract
Purpose: Cancer navigation improves access to support and reduces barriers to care; however, appropriate training of navigators is essential. We developed the TrueNTH Peer Navigation Training Program (PNTP), a competency-based, blended online/in-person course. In this study, we evaluate the feasibility, acceptability, and effectiveness of the PNTP among prostate cancer (PC) survivors (patients, caregivers)., Methods: We employed an explanatory mixed method study design consisting of course usage data, pre-/post-questionnaires, and focus groups informed by the Kirkpatrick framework and self-efficacy theory., Results: Three cohorts in two Canadian cities (n = 26) received the PNTP. Participants were motivated to support others like themselves (n = 20), fill a gap (n = 7), pay it forward (n = 6), and offer expertise (n = 4). Recruitment, retention, and questionnaire completion were 96.7%, 89.6%, and 92%. Participants contributed a total of 426 posts to the online forums (2 to 3 posts per participant/module). Satisfaction was 9.4/10 (SD = 0.7) and usability was 84.5/100 (SD = 10.1). All learning outcomes increased: understanding of learning objectives t(23) = - 6.12, p < 0.0001; self-efficacy to perform competencies t(23) = - 4.8, p < 0.0001; and eHealth literacy t(23) = - 4.4, p < 0.0001. Participants viewed the PTNP as intensive but manageable, improving knowledge and confidence and enhancing listening skills. Participants valued the flexibility of online learning, interactive online learning, in-person interactions for relationship building, and authentic role-playing for skill development., Conclusions: A facilitated online training program with in-person components is a highly acceptable and effective format to train PC survivors to become peer navigators. This competency-based peer navigator training program and delivery format may serve as a useful model for other cancer volunteer programs.
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- 2021
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49. Identifying factors influencing sustainability of innovations in cancer survivorship care: a qualitative study.
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Urquhart R, Kendell C, Cornelissen E, Powell BJ, Madden LL, Kissmann G, Richmond SA, and Bender JL
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- Canada, Delivery of Health Care, Humans, Qualitative Research, Neoplasms therapy, Survivorship
- Abstract
Objectives: Moving innovations into healthcare organisations to increase positive health outcomes remains a significant challenge. Even when knowledge and tools are adopted, they often fail to become integrated into the long-term routines of organisations. The objective of this study was to identify factors and processes influencing the sustainability of innovations in cancer survivorship care., Design: Qualitative study using semistructured, in-depth interviews, informed by grounded theory. Data were collected and analysed concurrently using constant comparative analysis., Setting: 25 cancer survivorship innovations based in six Canadian provinces., Participants: Twenty-seven implementation leaders and relevant staff from across Canada involved in the implementation of innovations in cancer survivorship., Results: The findings were categorised according to determinants, processes and implementation outcomes, and whether a factor was necessary to sustainability, or important but not necessary. Seven determinants, six processes and three implementation outcomes were perceived to influence sustainability. The necessary determinants were (1) management support; (2) organisational and system-level priorities; and (3) key people and expertise. Necessary processes were (4) innovation adaptation; (5) stakeholder engagement; and (6) ongoing education and training. The only necessary implementation outcome was (7) widespread staff and organisational buy-in for the innovation., Conclusions: Factors influencing the sustainability of cancer survivorship innovations exist across multiple levels of the health system and are often interdependent. Study findings may be used by implementation teams to plan for sustainability from the beginning of innovation adoption initiatives., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)
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50. Natural Language Processing-Based Virtual Cofacilitator for Online Cancer Support Groups: Protocol for an Algorithm Development and Validation Study.
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Leung YW, Wouterloot E, Adikari A, Hirst G, de Silva D, Wong J, Bender JL, Gancarz M, Gratzer D, Alahakoon D, and Esplen MJ
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Background: Cancer and its treatment can significantly impact the short- and long-term psychological well-being of patients and families. Emotional distress and depressive symptomatology are often associated with poor treatment adherence, reduced quality of life, and higher mortality. Cancer support groups, especially those led by health care professionals, provide a safe place for participants to discuss fear, normalize stress reactions, share solidarity, and learn about effective strategies to build resilience and enhance coping. However, in-person support groups may not always be accessible to individuals; geographic distance is one of the barriers for access, and compromised physical condition (eg, fatigue, pain) is another. Emerging evidence supports the effectiveness of online support groups in reducing access barriers. Text-based and professional-led online support groups have been offered by Cancer Chat Canada. Participants join the group discussion using text in real time. However, therapist leaders report some challenges leading text-based online support groups in the absence of visual cues, particularly in tracking participant distress. With multiple participants typing at the same time, the nuances of the text messages or red flags for distress can sometimes be missed. Recent advances in artificial intelligence such as deep learning-based natural language processing offer potential solutions. This technology can be used to analyze online support group text data to track participants' expressed emotional distress, including fear, sadness, and hopelessness. Artificial intelligence allows session activities to be monitored in real time and alerts the therapist to participant disengagement., Objective: We aim to develop and evaluate an artificial intelligence-based cofacilitator prototype to track and monitor online support group participants' distress through real-time analysis of text-based messages posted during synchronous sessions., Methods: An artificial intelligence-based cofacilitator will be developed to identify participants who are at-risk for increased emotional distress and track participant engagement and in-session group cohesion levels, providing real-time alerts for therapist to follow-up; generate postsession participant profiles that contain discussion content keywords and emotion profiles for each session; and automatically suggest tailored resources to participants according to their needs. The study is designed to be conducted in 4 phases consisting of (1) development based on a subset of data and an existing natural language processing framework, (2) performance evaluation using human scoring, (3) beta testing, and (4) user experience evaluation., Results: This study received ethics approval in August 2019. Phase 1, development of an artificial intelligence-based cofacilitator, was completed in January 2020. As of December 2020, phase 2 is underway. The study is expected to be completed by September 2021., Conclusions: An artificial intelligence-based cofacilitator offers a promising new mode of delivery of person-centered online support groups tailored to individual needs., International Registered Report Identifier (irrid): DERR1-10.2196/21453., (©Yvonne W Leung, Elise Wouterloot, Achini Adikari, Graeme Hirst, Daswin de Silva, Jiahui Wong, Jacqueline L Bender, Mathew Gancarz, David Gratzer, Damminda Alahakoon, Mary Jane Esplen. Originally published in JMIR Research Protocols (http://www.researchprotocols.org), 07.01.2021.)
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