BACKGROUND AND OBJECTIVES: In 2010, the Bioethics Committee of the American Academy of Pediatrics issued recommendations that pediatric hematopoietic stem cell donors should have an independent advocate. Formulating appropriate guidelines is hindered by the lack of prospective empirical evidence from families about the experience of siblings during typing and donation. Our aim was to provide these data. METHODS: Families with a child scheduled to undergo hematopoietic stem cell transplant were recruited. All family members, including children aged 9 to 22 years, were eligible. Qualitative interviews were conducted within 3 time periods: pretransplant, 6 to 8, and 9 to 11 months posttransplant. Quantitative scales assessing decision satisfaction and regret were administered at time 2. RESULTS: Thirty-three families were interviewed. Of the 119 family members, 76% perceived there was no choice in the decision to HLA-type siblings; 77% perceived no choice in sibling donation; 86% had no concerns about typing other than needle sticks; and 64% had no concerns about donation. Common concerns raised were dislike of needle sticks (19%), stress before typing results (14%), and fear of donation (15%). Posttransplantation, 33% of donors wished they had been given more information; 56% of donors stated they benefited from donation. Only 1 donor expressed regret posttransplant. CONCLUSIONS: Most family members did not view sibling typing and donation as a choice, were positive about the experience, and did not express regrets. We recommend education for all siblings before typing, comprehensive education for the donor by a health care provider pretransplant, and systematic donor follow-up after transplantation.

Background:With increasing numbers of oncology biosimilars in the approval pipeline, it is important to investigate oncology clinicians’ understanding of biosimilars and what information they need prior to adoption.Methods:Between January and May 2018, 77 oncology clinicians (52 physicians, 16 pharmacists, and 9 advanced practice providers) completed a survey covering three domains: clinician understanding, prescription preferences, and patient involvement. An in-depth interview was designed based on themes identified in the first 50 surveys: cost, safety and efficacy, patient preference, and disease stage. Participants were chosen to participate in the interview based on outlying responses to survey questions.Results:When asked to define a biosimilar, 74% (57/77) of respondents could not give a satisfactory definition, and 40.3% (31/77) considered a biosimilar the same as a generic drug. The most important factor in biosimilar prescription was safety and efficacy (4.51 out of 5) followed closely by cost differences (4.34 out of 5). A 40% increase (53.2–94.8%) in clinicians’ prescribing likelihood was seen after a biosimilar is designated as interchangeable. Participants in this study were split regarding the importance of shared decision-making with patients [50.7% (39/77) important or extremely important, 39.0% (30/77) somewhat or not at all important]. Clinicians were also split concerning the role that pharmacists should play in the decision to prescribe or substitute biosimilars.Conclusion:Understanding of biosimilars is low, and educational needs are high. The information that clinicians deem important to assess, such as safety, efficacy and cost, will need to be provided before they are comfortable prescribing biosimilars.

Background Molecular testing to inform treatment and clinical trial choices is now standard of care in several types of cancer. However, no established guidelines exist for the type of information physicians should cover during discussions with the patient about the test or its results. The objectives of this study were to identify physician and patient information preferences, as well as their preferences on who should communicate this information and how, to inform guidelines for these conversations. Methods Physicians and patients that participate in discussions regarding molecular testing were asked to choose 8 topics of most relevance out of a list of 18. McNemar's test was used to determine their top preferences. Patients were asked who/what should inform them and physicians were asked to identify the best aid to communication. Results Sixty-six patients identified 12 preferred topics: benefits of testing(88%); how testing determines treatment(88%); implications for family(71%), if test shows seriousness of disease(68%), purpose(64%), incidental findings(56%); explanation of cancer genetics(53%), how the test is done(46%), limitations(44%), explanation of biomarker(42%), risks(42%), and uninformative result(38%). Physicians added cost(59%). Patients preferred receiving information about molecular testing from their nurse or physician(85%) and physicians preferred using a pamphlet(67%) to augment communication. Conclusion The topics identified as important to discuss can inform future guidelines as well as contribute to effective communication regarding molecular testing.

OBJECTIVE To describe the strategies families report using to address the needs and concerns of siblings of children, adolescents, and young adults undergoing hematopoietic stem cell transplant (HSCT). METHODS A secondary semantic analysis was conducted of 86 qualitative interviews with family members of children, adolescents, and young adults undergoing HSCT at 4 HSCT centers and supplemented with a primary analysis of 38 additional targeted qualitative interviews (23 family members, 15 health care professionals) conducted at the primary center. Analyses focused on sibling issues and the strategies families use to address these issues. RESULTS The sibling issues identified included: (1) feeling negative effects of separation from the patient and caregiver(s); (2) experiencing difficult emotions; (3) being faced with additional responsibilities or burdens; (4) lacking information; and (5) feeling excluded. Families and health care providers reported the following strategies to support siblings: (1) sharing information; (2) using social support and help offered by family or friends; (3) taking siblings to the hospital; (4) communicating virtually; (5) providing special events or gifts or quality time for siblings; (6) offering siblings a defined role to help the family during the transplant process; (7) switching between parents at the hospital; (8) keeping the sibling’s life constant; and, (9) arranging sibling meetings with a certified child life specialist or school counselor. CONCLUSIONS Understanding the above strategies and sharing them with other families in similar situations can begin to address sibling issues during HSCT and can improve hospital-based, family-centered care efforts.

Background Chemotherapy is the backbone of many cancer therapies; however, the terminology used to describe chemotherapy may be difficult for patients to understand, particularly in underserved populations. Studies have shown that educational videos can improve patient understanding of cancer‐related terms. The goal of this study was to identify chemotherapy terms that were difficult for an underserved population to understand and then develop and test educational videos describing these terms. Methods A word bank of 50 difficult‐to‐understand chemotherapy terms was developed by querying 15 providers and 50 patients at an underserved hospital. Twenty of these terms were then tested with 50 additional patients to determine rates of misunderstanding. Six pilot educational videos describing 6 important terms were created using VideoScribe and then assessed with 50 patients to see if they improved understanding. Results Fifteen of the 20 terms tested to establish rates of misunderstanding were misunderstood by more than one third of patients, with 98% unable to define maintenance, 74% unable to define cancer, and 58% unable to define chemotherapy. Patient understanding of all 6 terms improved by at least 20% after watching the videos. Notable improvement was reported for palliative chemotherapy, where before‐and‐after video understanding increased from 0% to 72%. Conclusion Chemotherapy, a backbone of cancer treatment, is described with terms that are difficult to understand. Short, animated educational videos can significantly increase patient understanding of chemotherapy terminology.