Browsing by Subject "survivorship"
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Item Open Access Decreased Mortality in 1-Year Survivors of Umbilical Cord Blood Transplant vs. Matched Related or Matched Unrelated Donor Transplant in Patients with Hematologic Malignancies.(Transplant Cell Ther, 2021-05-12) Bohannon, Lauren; Tang, Helen; Page, Kristin; Ren, Yi; Jung, Sin-Ho; Artica, Alexandra; Britt, Anne; Islam, Prioty; Siamakpour-Reihani, Sharareh; Giri, Vinay; Lew, Meagan; Kelly, Matthew; Choi, Taewoong; Gasparetto, Cristina; Long, Gwynn; Lopez, Richard; Rizzieri, David; Sarantopoulos, Stefanie; Chao, Nelson; Horwitz, Mitchell; Sung, AnthonyBACKGROUND: Allogeneic hematopoietic stem cell transplantation (HCT) has the potential to cure hematologic malignancies, but is associated with significant morbidity and mortality. While deaths during the first year after transplant are often attributable to treatment toxicities and complications, death after the first year may be due to sequelae of accelerated aging caused by cellular senescence. Cytotoxic therapies and radiation used in cancer treatments and conditioning regimens for HCT can induce aging at the molecular level; HCT patients experience time-dependent effects, such as frailty and aging-associated diseases, more rapidly than people who have not been exposed to these treatments. Consistent with this, recipients of younger cells tend to have decreased markers of aging and improved survival, decreased GVHD, and lower relapse rates. OBJECTIVES: Given that umbilical cord blood (UCB) is the youngest donor source available, we studied the outcomes after the first year of UCB transplant vs. matched related donor (MRD) and matched unrelated donor (MUD) transplant in patients with hematologic malignancies over a 20-year period. STUDY DESIGN: In this single center, retrospective study, we examined the outcomes of all adult patients who underwent their first allogeneic HCT through the Duke Adult Bone Marrow Transplant (ABMT) program from January 1, 1996 to December 31, 2015, to allow for at least 3 years of follow-up. Patients were excluded if they died or were lost to follow-up before day 365 post-HCT; received an allogeneic HCT for a disease other than a hematologic malignancy; or received cells from a haploidentical or mismatched adult donor. RESULTS: UCB recipients experienced a better unadjusted overall survival than MRD/MUD recipients (log rank p=0.03, Figure 1, median OS: UCB not reached, MRD/MUD 7.4 years). After adjusting for selected covariates, UCB recipients who survived at least 1 year after HCT had a hazard of death that was 31% lower than that of MRD/MUD recipients (HR: 0.69, 95% CI: 0.47-0.99, p=0.049). This trend held true in a subset analysis of subjects with acute leukemia. UCB recipients also experienced lower rates of moderate or severe chronic graft-versus-host disease (GVHD) and non-relapse mortality, and slower time to relapse. UCB and MRD/MUD recipients experienced similar rates of grade 2-4 acute GVHD, chronic GHVD, secondary malignancy, and subsequent allogeneic HCT. CONCLUSIONS: UCB is already widely used as a donor source in pediatric HCT; however, adult outcomes and adoption have historically lagged behind in comparison. Recent advancements in UCB transplantation such as the implementation of lower-intensity conditioning regimens, double unit transplants, and ex-vivo expansion have improved early mortality, making UCB an increasingly attractive donor source for adults; furthermore, our findings suggest that UCB may actually be a preferred donor source for mitigating late effects of HCT.Item Open Access Early Survivorship after Liver Transplantation: A Qualitative Study Identifying Challenges in Recovery From The Patient and Caregiver Perspective.(Liver transplantation : official publication of the American Association for the Study of Liver Diseases and the International Liver Transplantation Society, 2021-09-16) Lieber, Sarah R; Kim, Hannah P; Baldelli, Luke; Nash, Rebekah; Teal, Randall; Magee, Gabrielle; Desai, Chirag S; Loiselle, Marci M; Lee, Simon C; Singal, Amit G; Marrero, Jorge A; Barritt, A Sidney; Evon, Donna MBackground
Survivorship after liver transplantation (LT) is a novel concept providing a holistic view of the arduous recovery experienced after transplantation. We explored components of early survivorship including physical, emotional, and psychocological challenges to identify intervention targets for improving the recovery process of LT recipients and caregivers.Methods
Twenty in-person interviews were conducted among adults 3-6 months post-LT. Trained qualitative research experts conducted interviews, coded, and analyzed transcripts to identify relevant themes and representative quotes.Results
Early survivorship comprises overcoming: 1) physical challenges-the most-challenging experiences involving mobility, driving, dietary modifications, and medication adherence and 2) emotional and psychological challenges-including new health concerns, financial worries, body image/identity struggles, social isolation, dependency issues, and concerns about never returning to normal. Etiology of liver disease informed survivorship experiences including some patients with hepatocellular carcinoma expressing decisional regret or uncertainty in light of their post-LT experiences. Important topics were identified that framed LT recovery including setting expectations about waitlist experiences, hospital recovery, and ongoing medication requirements.Conclusion
Early survivorship after LT within the first six months involves a wide array of physical, emotional and psychological challenges. Patients and caregivers identified what they wish they had known prior to transplant and strategies for recovery, which can inform targeted LT survivorship interventions.Item Open Access Parental Adjustment: an Examination of Caregivers of Pediatric Cancer Survivors(2009) Hutchinson, Katherine ConlonCaregivers of survivors of pediatric cancer face ongoing social, emotional and financial challenges that may result in enduring illness- and caregiving-related distress. After patients complete treatment there are challenges that persist. Indeed, emerging physical and cognitive "late effects," resulting from the disease and treatment, require families to adapt to a new normal state that may require significant long-term follow-up and care by the survivor and their primary caregiver. This study compares the psychological adjustment of caregivers of pediatric cancer survivors with caregivers of healthy children. In addition, this study evaluates individual factors, such as family functioning and coping style, which may be associated with poorer adjustment among caregivers of pediatric cancer survivors. Caregivers of pediatric cancer survivors (n = 64) and caregivers of healthy children (n = 64) were recruited during regularly scheduled clinic visits to complete questionnaires including a demographic and illness questionnaire and measures of psychosocial functioning. A series of multivariate analyses of covariance were conducted to assess for differences in caregiver distress by group. Caregivers of survivors reported significantly more child-specific parenting stress and somatization than caregivers of healthy children. Hierarchical regression modeling revealed that Escape-avoidance coping and Supportive family functioning predicted 25-40% of the variance in parenting-related psychological adjustment among caregivers of survivors. Caregivers of pediatric cancer survivors face unique challenges that contribute to ongoing distress, particularly related to the parenting role. This population may benefit from interventions aimed at reducing avoidance based coping and improving family functioning.
Item Open Access What Survivorship Means to Liver Transplant Recipients-Qualitative Groundwork for A Survivorship Conceptual Model.(Liver transplantation : official publication of the American Association for the Study of Liver Diseases and the International Liver Transplantation Society, 2021-05-03) Lieber, Sarah R; Kim, Hannah P; Baldelli, Luke; Nash, Rebekah; Teal, Randall; Magee, Gabrielle; Loiselle, Marci M; Desai, Chirag S; Lee, Simon C; Singal, Amit G; Marrero, Jorge A; Barritt, A Sidney; Evon, Donna MBackground & aims
Survivorship is a well-established concept in the cancer care continuum with a focus on disease recurrence, quality of life, and minimizing competing risks for mortality; however, this has not been well studied in liver transplantation (LT). We aimed to investigate what survivorship means to LT patients and identify motivations and coping strategies for overcoming challenges after LT.Approach & results
Twenty in-depth home interviews were conducted among adults 3 to 6 months after LT. Interviews were conducted by trained qualitative research experts, coded and analyzed using an inductive approach. A majority of LT recipients (75%) identified themselves as survivors. Integral to the definition of survivorship was overcoming hardship (including experiences on the waitlist) and the unique experience of being given a "second chance" at life. Motivations to survive included: 1) honoring a new chance at life (55%), 2) family (40%), 3) spirituality/faith (30%), and 4) fear of rejection (15%). LT recipients and caregivers identified multiple strategies to cope with post-LT challenges including relying on a large network of community, spiritual, and virtual support. These findings informed a conceptual model of LT survivorship based on socioecological theory, which identified the following variables influencing survivorship: 1) pre-transplant experiences, 2) individual attributes and challenges, 3) interpersonal relationships with caregivers and other social support, 4) community relationships, and, 5) largescale factors including neighborhood and financial issues.Conclusions
LT recipients identify themselves as survivors, and post-LT identities were greatly influenced by pre-LT experiences. These perspectives informed an in depth conceptual model of survivorship after transplantation. We identified sources of motivation and coping strategies used in LT recovery that could be targets of survivorship interventions aimed at improving post-LT outcomes.