scholarly journals Identifying Religious/Spiritual (R/S) Perspectives of Adolescents and Young Adults Receiving Blood and Marrow Transplant: A Qualitative Study

2012 ◽  
Vol 18 (2) ◽  
pp. S321
Author(s):  
M.A. Hegner ◽  
J.R. Ragsdale ◽  
D.H. Grossoehme ◽  
M. Mueller ◽  
S.M. Davies
Keyword(s):  
Young Adults ◽  
Qualitative Study ◽  
Marrow Transplant ◽  
Adolescents And Young Adults ◽  
Blood And Marrow Transplant

scholarly journals Multiple Myeloma in Adolescent and Young Adults: A SEER and CIBMTR Analysis

Blood ◽  
2020 ◽  
Vol 136 (Supplement 1) ◽  
pp. 12-13
Author(s):  
Steven J Gibson ◽  
Jennifer A Thornton ◽  
Christin B DeStefano
Keyword(s):  
Multiple Myeloma ◽  
Young Adults ◽  
Medical Center ◽  
The United States ◽  
Marrow Transplant ◽  
Cell Transplant ◽  
Blood And Marrow Transplant ◽  
Race Ethnicity

Background Multiple myeloma (MM) is a disease of the elderly, with less than 3% of cases diagnosed in adolescents and young adults (AYA). Data on demographics, use of autologous stem cell transplant (ASCT), second primary malignancies (SPMs) and survival are scant to non-existent in the AYA MM population. To our knowledge, this study is the first to better understand characteristics and survival trends of this unique population. Methods The Surveillance, Epidemiology, and End Results (SEER)-18 and Center for International Blood and Marrow Transplant Research (CIBMTR) datasets were utilized. Inclusion criteria were patients younger than 40 years old diagnosed with MM (ICD-O code 9732/3) between 2000-2017 (SEER) and 2008-2018 (CIBMTR). Variables assessed included age (<30 vs. 30-39), gender, income (<65K vs. ≥65K), race/ethnicity, place of residence (metropolitan vs. non-metropolitan), and year diagnosed (2000-2005 vs. 2006-2011 vs. 2012-2017). Incident SPMs were characterized as standardized incidence ratios (SIR). Analyses were conducted with STATA and data were censored at time of death or loss to follow up. Kaplan-Meier curves were generated for myeloma-specific survival (MSS). Individual variables were compared via log rank tests and Cox proportional hazard regression models. Model fit was assessed with Akaike's information criterion and Snell residuals. Assumptions of the Cox proportional hazards model were evaluated with log-time. Results There were 1,087 and 1,142 patients meeting criteria in SEER and CIBMTR, respectively. Median MSS was 181 months (15 years). The most common causes of death were MM (76%), SPMs (5.5%), and infection (3.6%). Statistically significant incident SPMs were lung cancers (SIR 4.94, p<0.05), non-Hodgkin lymphoma (NHL) (SIR 5.28, p<0.05), and acute myeloid leukemia (AML) (SIR 14.62, p<0.05). Year of diagnosis strongly influenced survival. Compared to those diagnosed in 2000-2005, there was a 36% reduction in the risk of death among those diagnosed 2006-2011 (HR 0.64, 95% CI 0.49-0.82, p=0.001), and a 61% reduction among those diagnosed 2012-2017 (HR 0.39, 95% CI 0.26-0.58, p<0.001). Race/ethnicity, gender, and age did not impact MSS. Among the AYA MM patients who received ASCT, notably 26% had a hematopoietic cell transplant comorbidity index (HCT-CI) of ≥ 3, nearly all received melphalan conditioning, and 80% received ASCT within the first year of diagnosis. One and four-year post-ASCT survival were 96% and 81%, respectively. Discussion To our knowledge, this is the first study assessing MM trends in the AYA population. Despite AYAs being underrepresented in MM clinical trials, the dramatic improvement in survival over time reflects efficacy of new drug approvals in this young population. It is also interesting that racial and socioeconomic disparities which are pervasive in the older adult MM population were not demonstrated in AYAs. AYA patients died from SPMs at rates similar to the adult MM population (3-6%), and notable incident SPMs in the AYA population were lung cancer, NHL, and AML. Also noteworthy was the high number of AYA MM patients who underwent up-front ASCT, which was nearly the same number of patients from the SEER dataset over half the amount of time. Since AYA MM patients have been underrepresented in trials utilizing ASCT, a survival benefit of ASCT in this population has not been demonstrated in the era of novel therapies. Further, given possible underlying genetic predisposition in AYA MM patients, long-term post-ASCT follow up is needed to better understand long-term toxicities including risk of hematological SPMs. Disclosures The findings and opinions contained herein are those of the authors and do not represent the views/opinions of the United States Air Force, Walter Reed National Military Medical Center, David Grant Medical Center, Department of Defense, or the Center for International Blood and Marrow Transplant Research (CIBMTR). Disclosures No relevant conflicts of interest to declare.

scholarly journals Mindfulness-Based Cognitive Therapy Experiences in Youth With Inflammatory Bowel Disease and Depression: Protocol for a Mixed Methods Qualitative Study (Preprint)

2019 ◽  
Author(s):  
Tatjana Ewais ◽  
Jakob Begun ◽  
Maura Kenny ◽  
Alan Headey ◽  
Steve Kisely
Keyword(s):  
Inflammatory Bowel Disease ◽  
Young Adults ◽  
Mixed Methods ◽  
Qualitative Study ◽  
Focus Groups ◽  
Bowel Disease ◽  
Qualitative Data ◽  
Adolescents And Young Adults ◽  
Inflammatory Bowel

BACKGROUND Mindfulness-based programs are increasingly used as a part of integrated treatment for inflammatory bowel disease (IBD). However, the majority of research has been quantitative with limited qualitative exploration of patients’ experiences of mindfulness programs and no studies among adolescents and young adults with IBD. Furthermore, there has been a paucity of research exploring the role of common psychotherapy and group factors within mindfulness programs. OBJECTIVE This study aims to explore the experiences of adolescents and young adults with IBD and depression who completed a mindfulness-based cognitive therapy (MBCT) group program, as well as the role of therapeutic alliance, group affiliation, and other common psychotherapy and group factors. METHODS This mixed methods qualitative study, nested within a randomized controlled trial (RCT) of MBCT for adolescents and young adults with IBD, will obtain qualitative data from focus groups and open-ended survey questions. The study aims to conduct three to four focus groups with 6-8 participants in each group. It will employ data and investigator triangulation as well as thematic analysis of the qualitative data. RESULTS The study was approved by the Mater Hospital Human Research Ethics Committee and recruitment commenced in May 2019; study completion is anticipated by early 2020. CONCLUSIONS The study will contribute to the assessment of acceptability and feasibility of the MBCT program for adolescents and young adults with IBD. It will also elucidate the role of previously unexplored common psychotherapy and group factors within mindfulness training and help inform the design of a future large-scale RCT of MBCT in this cohort. CLINICALTRIAL Australian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12617000876392; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=373115 INTERNATIONAL REGISTERED REPOR PRR1-10.2196/14432

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