Objective: Families with a parent and child concurrently receiving cancer treatment are not common, but their needs are typically more complex than families with only one member in treatment. They have a heightened sense of loss, vulnerability, and mortality. The study purpose was to: (1) describe quality of life, social support, resiliency, and loss for these families; and (2) describe how healthcare teams can support these families. Methods:This was a qualitative study with 20 oncology social workers who had worked with families with a parent and child concurrently receiving treatment for cancer within the past five years. The interview included questions about the emotional, social, financial, and other needs of these families, as well as their social support, quality of life, loss, and resiliency.Results: Three themes emerged from the data: 1. Increased demands on the family with a concurrent cancer treatment, including emotional, financial, and logistical challenges for the ill parent and child and for the healthy parent and siblings; 2.Greater resilience and coping skills were experienced by some families; and 3. Implications for the healthcare team, including emotional distress in treating these families, challenges in treatment adherence, and providing the necessary support to these families. Conclusion:Supporting these families is challenging for social workers and other members of the healthcare team. Understanding the emotional, financial and logistical needs of these families, and coordinating their care across the adult and pediatric teams, will better support the patients, as well as the healthcare providers who work with them.
BACKGROUND: Philadelphia Chromosome Positive Acute Lymphoblastic Leukemia (Ph+ALL), an aggressive disease with historically poor survival in adults, is treated with tyrosine kinase inhibitors (TKI) plus chemotherapy. Choosing a TKI involves considering a variety of factors, including the benefits and risks of each therapy. This study aims to understand patients' preferences for these benefits and risks, and how this varies between patients. METHODS: In a US-based study conducted between February and April 2020, adult patients (≥ 18 years) with self-reported Ph+ALL (newly diagnosed and relapsed/refractory) completed an online discrete choice experiment (DCE) comprising 12 experimental and 2 internal validity choice tasks. For each task, patients were asked to choose between 2 hypothetical treatments with different levels of benefits and risks. Attributes and levels in the DCE included overall survival (OS, 30-90 months in 5-month increments), duration of remission (DOR, 15-75 months in 5-month increments), risk of a major CV event (0%, 25%, 50%), and risk of myelosuppression (0%, 50%, 100%). A multinomial logit model was used to estimate patients' preferences expressed as weights based on part-worth utilities with 95% CI . A benefit-risk assessment was subsequently conducted to estimate the proportion of patients who would be expected to prefer different TKI profiles. The hypothetical benefit-risk profiles included within this analysis are outlined in Table 1. RESULTS: The DCE was completed by 201 patients. Mean age was 44.8 ± 12.9 years, 17% had ≥2 relapses, 58% were diagnosed >12 months previously, and 67% were in remission. The most common ongoing therapies were dasatinib (24%) and imatinib (18%). Internal validity was high: 88% passed the choice dominance test (where one treatment option was superior for all 4 attributes) and 98% never selected the same option. When selecting a preferred treatment, patients cared the most about a 1-month increase in OS (utility=0.032 [95% CI, 0.021-0.042]) and a 1-month increase in duration of remission (utility=0.017 [95% CI, 0.012-0.023]) and they cared less about reducing the risk of a major CV event by 1% (utility=0.011 [95% CI, 0.008-0.013]) and reducing the risk of myelosuppression by 1% (utility=0.009 [95% CI, 0.008-0.010]). Patients were willing to tolerate a 2.9% (95% CI, 1.78-4.02) increase in risk of a major CV event for 1 additional month of OS, and 1.59% (95% CI, 0.95%-2.24%) increase in risk of a major CV event for an additional 1 month in remission. Figure 1 shows the proportion of patients who would be expected to prefer each of the TKIs, given only the choice between the 4 hypothetical TKIs outlined in Table 1. The results are presented by the overall sample and by subgroups of patients. When the analysis is run for the whole sample, 61.4% of patients are expected to prefer the benefit-risk profile of TKI A, choosing the longer OS and duration of remission, despite the higher CV and myelosuppression risk. However, treatment preference varied between patient subgroups, with greater proportions of patients expected to prefer the benefit-risk profile of TKI A if they had already experienced more than 3 prior lines of Ph+ALL treatment, were in remission, had not relapsed, or had fewer physical limitations. In contrast, other patients were less likely to tolerate higher risks for improvements in remission and survival, such as patients who were diagnosed less than 1 year ago and those who had just started treatment. CONCLUSIONS: Most Ph+ALL patients are willing to accept an increased risk of CV events and myelosuppression in exchange for the improvements in survival and duration of remission generated by frontline treatment. However, risk tolerance varies between patients, with some subgroups of patients being more willing to tolerate increased risks. Consideration of patient specific preferences observed in this study can further assist clinicians in selection of appropriate treatment in discussion with their patients. Disclosures Ashaye: Takeda Pharmaceutical Company Limited: Current Employment, Current equity holder in publicly-traded company. Thomas:Evidera: Consultancy. Dalal:Millennium Pharmaceuticals Inc, a wholly owned subsidiary of Takeda Pharmaceutical International Company, Cambridge, MA: Current Employment, Current equity holder in private company. Kota:Novartis: Consultancy, Honoraria; Xcenda: Honoraria; Ariad: Honoraria; Pfizer: Consultancy, Honoraria; Millennium Pharmaceuticals, Inc., a wholly owned subsidiary of Takeda Pharmaceutical, Company Ltd, Cambridge, MA, USA: Honoraria; Incyte: Honoraria. Krucien:Evidera: Current Employment. Sae-Hau:The Leukemia & Lymphoma Society: Current Employment, Research Funding. Barnhart:Evidera: Research Funding; Amgen: Research Funding; Amgen: Research Funding; Takeda: Research Funding. Weiss:The Leukemia & Lymphoma Society: Current Employment, Research Funding. Campbell:Millennium Pharmaceuticals, Inc., a wholly owned subsidiary of Takeda Pharmaceutical Company Ltd: Current Employment. Marsh:Evidera: Consultancy.
Background: The Association of Community Cancer Centers (ACCC) is an education and advocacy organization with a diverse membership, representing all cancer program types with the largest majority (75%) being community-based cancer programs and private practices. Beyond the academic setting, ACCC seeks to expand education on the advancements in all cancer care and since measurable residual disease (MRD) is the most important prognostic factor that guides the therapy for patients with acute lymphoblastic leukemia (ALL), this project aimed to emphasize the importance of MRD testing for adult patients with ALL in the community oncology setting. Objective: The ACCC led a national initiative, in partnership with the Leukemia & Lymphoma Society (LLS), to improve the diagnosis, treatment and management of adult patients diagnosed with ALL in community oncology practices. This educational program focused on understanding the benefits of knowing patients' MRD testing and interpretation and the need to integrate this testing into standard of care practice in community oncology practice settings. Methods: This one-year programmatic initiative was designed by a group of multidisciplinary oncology faculty and structured around a peer-to-peer learning format that enabled ALL expert faculty to share effective practices for the treatment, care coordination and management of adult patients with ALL. An environmental scan was conducted to understand the landscape for utilization of MRD data in the community setting. Challenges and barriers identified in six key areas ((Initial Diagnostic Workup, Shared Decision Making, MRD Testing, Patient Access, Cost, and Reimbursement, Side-effect Management and Transitions in Care) were addressed by the development of healthcare professional-focused educational tools. Results: The educational material developed as part of the program include an environmental scan, blog series and webinar series that was viewed over 300 times by engaged ACCC members representing more than 75 cancer programs across 27 states. The four-part blog series covered a pathologist's perspective on the importance of MRD testing, a pharmacist's views on incorporating health literacy for patients, and social work and nursing perspectives on challenges with helping adult patients manage an ALL diagnosis. The three-part webinar series included an informative ASH 2018 update that included key abstracts and findings, a webinar that included a patient and care providers which shed light on the support needed along a patient's journey, and a webinar that explored critical insights for treating adult ALL from the perspective of a pharmacist, pathologist and oncologist. These enduring resources are available on-demand for the multidisciplinary care team. Conclusions: This program demonstrated the success of adopting a peer-to-peer educational learning platform to educate the multidisciplinary team providing care for adult patients diagnosed with ALL. Given rapid technological advances and emerging indications, the comprehensive educational materials developed were useful for the education of both the treating team and the patients in the community oncology setting. Disclosures Emadi: Jazz Pharmaceuticals: Research Funding; NewLink Genetics: Research Funding; Amgen: Consultancy, Honoraria, Membership on an entity's Board of Directors or advisory committees; KinaRx: Membership on an entity's Board of Directors or advisory committees, Other: Co-Founder and Scientific Advisor, Patents & Royalties; Genentech: Consultancy, Honoraria. Jabbour:Takeda: Consultancy, Research Funding; BMS: Consultancy, Research Funding; Adaptive: Consultancy, Research Funding; Amgen: Consultancy, Research Funding; AbbVie: Consultancy, Research Funding; Pfizer: Consultancy, Research Funding; Cyclacel LTD: Research Funding. Kendall:Eli Lilly: Speakers Bureau; Novartis: Speakers Bureau; Pfizer: Speakers Bureau. Rogers:Teva: Speakers Bureau; Takeda: Honoraria; Genentech: Speakers Bureau; Seattle Genetics: Speakers Bureau; Abbvie: Speakers Bureau; Cardinal Health: Honoraria; Genentech: Honoraria; Mylan: Honoraria; Coherus: Speakers Bureau.
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