Publications by authors named "Deborah Mattila"

Article Synopsis
  • The CIBMTR's 2023 summary slides now include data on CAR-T therapy and patient-reported outcomes (PROs), enhancing the understanding of transplantation trends.
  • The CIBMTR launched a PRO data collection protocol in August 2020 to gather insights from adult hematopoietic cell transplantation (HCT) and CAR-T recipients at participating centers.
  • As of September 2023, PRO data from 993 patients across 25 centers have been collected and integrated with clinical data to improve patient care and support comprehensive research.
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Allogeneic hematopoietic cell transplantation is a life-saving procedure used to treat a variety of devastating diseases. It requires hematopoietic stem cells collected via filgrastim-mobilized peripheral blood stem cells (PBSCs) or bone marrow (BM) harvest from volunteer unrelated donors (URDs). There is a paucity of safety data regarding donors' long-term adverse events.

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Young adults from underserved racial/ethnic groups are critically needed as unrelated hematopoietic stem cell (HSC) donors, yet they are more likely than other groups to opt out of donation after having matched a patient. Understanding which factors are most strongly associated with opting out among young underserved racial/ ethnic registered donors compared with their White counterparts will provide the basis for specific interventions to improve donor retention. We sought to determine the key, modifiable psychosocial, registry-related, and donation-related characteristics that are uniquely associated with opting out across 5 key racial/ethnic groups of young HSC donor registry members who had been contacted as a potential match for a patient.

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Background: The Center for International Blood and Marrow Transplant Research (CIBMTR) provides a 1-year overall survival calculator to estimate outcomes for individual patients before they undergo allogeneic hematopoietic cell transplantation (HCT) to inform risk. The calculator considers pre-HCT clinical and demographic characteristics, but not patient-reported outcomes (PROs). Because pre-HCT PRO scores have been associated with post-HCT outcomes, the authors hypothesized that adding PRO scores to the calculator would enhance its predictive power.

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Article Synopsis
  • Palliative care (PC) is beneficial for patients undergoing hematopoietic stem cell transplantation (HSCT), but many patients have limited knowledge about it, with 44.3% reporting unfamiliarity.
  • A study surveyed HSCT recipients and found that while many had positive feelings about PC, a significant portion still lacked understanding, highlighting the importance of education on PC.
  • The results suggest that increased knowledge about PC correlates with more positive perceptions among patients, which counters transplant physicians’ concerns about how patients perceive PC and emphasizes the need for better communication and education.
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Article Synopsis
  • Young adults in HSC donor registries, like Be The Match, frequently choose to opt out when contacted for donation, limiting the availability of stem cells for transplantation.
  • This study aims to compare characteristics of young donors (ages 18-30) who complete the donation process versus those who opt out, examining aspects like demographics, psychosocial factors, and knowledge about donation.
  • Findings reveal that those who proceed with donation tend to have better knowledge about the process, while those who opt out often express mistrust, religious objections, and concerns regarding the donation.
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Article Synopsis
  • Attrition of young adult members from HSC donation registries, like Be The Match, poses challenges, particularly affecting racial/ethnic minority groups in the US, who are more likely to drop out when asked to donate.
  • This study aimed to explore demographic and psychosocial factors influencing young, newly registered potential donors, focusing on differences among racial/ethnic groups.
  • Results showed that white individuals typically joined online, while black and Hispanic individuals often joined at college; ambivalence about donating was notably higher among Asian/Pacific Islanders compared to others.
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The importance of patient-reported outcomes (PROs) in cellular therapies, including hematopoietic cell transplantation (HCT) is highlighted in this study. Longitudinal collection of PROs in a registry is recommended for several reasons, yet to date, PROs are not routinely collected from HCT patients to augment clinical registry data. The aim of this study was to determine the feasibility of electronic PRO data collection by a national clinical outcomes registry, by assessing differences between who does and does not report PROs.

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Survivorship Care Plans (SCPs) may facilitate long-term care for cancer survivors, but their effectiveness has not been established in hematopoietic cell transplantation recipients. We evaluated the impact of individualized SCPs on patient-reported outcomes among transplant survivors. Adult (≥18 years at transplant) survivors who were 1-5 years post transplantation, proficient in English, and without relapse or secondary cancers were eligible for this multicenter randomized trial.

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To study the factors associated with poorer health-related quality of life at 1-year post-allogeneic hematopoietic cell transplantation (alloHCT), a secondary analysis of a prospective feasibility study was performed. Pediatric Quality of Life Inventory questionnaires were collected in 76 children undergoing alloHCT at baseline (within 30 d before transplantation), day 100, 6 months, and 12 months posttransplantation. The global score improved post-HCT (baseline: 67.

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Background: Allogeneic hematopoietic cell transplantation (HCT) cures many patients, but often with the risk of late effects and impaired quality of life. The value of quantifying patient-reported outcomes (PROs) is increasingly being recognized, but the routine collection of PROs is uncommon. This study evaluated the feasibility of prospective PRO collection by an outcome registry at multiple time points from unselected HCT patients undergoing transplantation at centers contributing clinical data to the Center for International Blood and Marrow Transplant Research (CIBMTR), and then it correlated the PRO data with clinical and demographic data.

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