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Diagnosis Disclosure and Related Illness Experience in Patients With Multiple Myeloma and Precursor Plasma Cell Disorders
Malik, Maria A; Dalvi, Akshay A; Derkach, Andriy; MartÃnez, Jorge A; Hydren, Jay R; Merlo, Gia; Aldana, Ana M; Ahlstrom, Jennifer M; Usmani, Saad Z; Chimonas, Susan; Ortiz, Robin; Shah, Urvi A
BACKGROUND:Social support is associated with improved prognosis and quality of life after a cancer diagnosis. However, less is known about patients' experiences with disclosing their diagnosis to access support. This study investigated diagnosis disclosure patterns and the illness experiences of patients with multiple myeloma and precursor plasma cell disorders. METHODS:A 34-question survey was distributed between April-November 2023 to patients with plasma cell disorders via HealthTree Foundation's Patient Portal. Deidentified survey responses were analyzed using summary statistics, Fisher's exact test for group comparisons, and qualitative coding of open-ended answers. RESULTS:Among 510 survey respondents, 98% shared their diagnosis. Of these (n = 501), most shared within a day or week (88%), primarily in person (86%), and most frequently with spouses/partners (81%) and friends (81%). Sharers reported improved coping (84%) and stronger relationships (55%), whereas nonsharers (n = 9) reported feeling more isolated (56%). The majority of sharers (87%) did not regret disclosing their diagnosis to anyone. Compared to patients with multiple myeloma (n = 328; 78%), patients with precursor disorders (n = 44; 56%) were less likely to report coping well with their diagnosis (P < .001). Overall, participants advised newly diagnosed patients to consider disclosure timing, prioritize sharing with close contacts, maintain privacy, and educate themselves before sharing. CONCLUSION/CONCLUSIONS:Patients considered diagnosis disclosure to be beneficial to their coping and relationships, and recommended considering various factors when disclosing, including timing, personal relationships, and privacy. Patients with precursor disorders were less likely to indicate they were coping well, suggesting that this group may benefit from additional support resources.
PMID: 42020274
ISSN: 2152-2669
CID: 6032872
Maternal Nativity and Residence in US Territories and Preterm Birth
Montoya-Williams, Diana; Barreto, Alejandra; Formanowski, Brielle; Burris, Heather H; Handley, Sara C; Nelin, Timothy; Lorch, Scott A; Ortiz, Robin
IMPORTANCE/UNASSIGNED:US territory nativity and/or residence may be associated with health because it affects environmental exposures, insurance coverage, prenatal care, and other factors. Investigations of preterm birth in the US territories are limited. OBJECTIVE/UNASSIGNED:To assess the association between maternal territory status and preterm birth, as well as whether insurance type modified associations. DESIGN, SETTING, AND PARTICIPANTS/UNASSIGNED:Cross-sectional study of restricted-use birth certificates of in-hospital, singleton births in the US and territories from 2014 to 2023. EXPOSURES/UNASSIGNED:Maternal territory status was defined for births in territories where data were available (Guam, Northern Mariana Islands, Puerto Rico, and Virgin Islands) for the following groups: (1) those with territory nativity and residence; (2) those with territory nativity and mainland residence; (3) those with mainland nativity and territory residence; and (4) those with mainland nativity and residence (reference group). Insurance type (private, Medicaid, or other) was evaluated as well. MAIN OUTCOMES AND MEASURES/UNASSIGNED:Preterm birth (live birth before 37 weeks' gestation). RESULTS/UNASSIGNED:Among 28 627 700 births, 465 291 (1.6%) had any maternal territory status (nativity or residence). This group had a mean (SD) age of 27.1 (6.0) years, and 297 593 (64.0%) had Medicaid insurance. The highest preterm birth rate was among those with territory nativity and residence (10.5%; 95% CI, 10.4%-10.7%); the lowest was among those with mainland nativity and residence (8.4%; 95% CI, 8.4%-8.5%). Individuals with territory nativity and residence had an adjusted relative risk (aRR) of 1.30 (95% CI, 1.29-1.32) for preterm birth compared with the reference group. There was significant interaction between territory residence and insurance. Compared with individuals with mainland residence and private insurance, those with territory residence and Medicaid had the highest preterm birth risk (aRR, 1.57; 95% CI, 1.55-1.59), followed by territory residence and private insurance (aRR, 1.42; 95% CI, 1.39-1.45). CONCLUSIONS AND RELEVANCE/UNASSIGNED:In this cross-sectional study, maternal territory nativity and residence were associated with preterm birth. Territory residence was associated with a higher risk of preterm birth, regardless of insurance type. Privately insured-individuals in US territories had a higher risk of preterm birth than Medicaid-insured individuals in the mainland. Given differential access to health care, health insurance, and other social exposures between territory and mainland populations, future work should explore causal effects and related policies that may improve birth outcomes in US territories.
PMCID:13022733
PMID: 41885860
ISSN: 2574-3805
CID: 6018562
Childhood adversity, allostatic load and epigenetic signatures in paediatric and adult-onset multiple sclerosis
O'Neill, Kimberly A; van der Veer, Bernard K; Charvet, Leigh; Azmy, Nadine; Friedman, Steven; Hu, Jiyuan; Lei, Kevin; Ortiz, Robin; Pehel, Shayna; Shi, Yidan; Sosa, Anna; Koh, Kian Peng; Maletic-Savatic, Mirjana; Krupp, Lauren B
Childhood adversity is increasingly recognized as a critical modifier of neurologic disorder development and disease severity, including in the neuroimmune disorder multiple sclerosis (MS). While previous studies have linked early-life adversity to increased MS susceptibility and more severe disease, the underlying biological mechanisms remain poorly understood. This study investigated associations between childhood adversity and MS clinical features, with a focus on two potential pathogenic mechanisms: allostatic load and epigenetic modifications. We evaluated 60 consecutively enrolled young adults with MS; 30 with paediatric-onset MS (POMS) and 30 with adult-onset MS (AOMS). At time of enrolment in this cross-sectional study, participants had MS disease duration of 6 years on average. POMS participants were mean 22.09 (2.66) years and AOMS participants were mean 32.41 (2.19) years old. 62% of participants were female. Childhood adversity was defined using a composite index of individual, family and socioeconomic measures captured by the adverse childhood experiences questionnaire, parental education level and estimated household income during childhood. Clinical outcomes included patient-reported SymptoMScreen questionnaire regarding MS symptom burden and MS neurologist-assessed disability using the Expanded Disability Status Scale (EDSS) of the participant's neurologic exam at the time of enrolment. Circulating biomarkers of allostatic load and genome-wide epigenetic profiles (DNA methylation via RRBS; reduced representation bisulfite sequencing) were also assessed. A history of high childhood adversity was associated with significantly greater patient-reported MS symptom burden (P = 0.001) and higher neurologist-reported EDSS disability scores (P = 0.028), independent of disease duration or timing of treatment initiation. There were no differences between childhood adversity and circulating biomarkers of allostatic load. While childhood adversity was not associated with global epigenetic changes across the entire cohort, stratified analysis revealed divergent methylation patterns by age of MS onset: POMS participants with childhood adversity had increased DNA methylation, whereas AOMS participants with childhood adversity showed decreased methylation compared to individuals without childhood adversity. None of the observed clinical and biologic differences were explained by differences in disease duration or the interval between symptom onset and treatment initiation. Our findings suggest that childhood adversity is associated with increased MS symptom burden and neurologic disability in young adults with MS. Childhood adversity may differentially shape the epigenome, depending on the age of MS onset, with potential implications for disease trajectory and therapeutic vulnerability. These results support the biological embedding of childhood adversity in MS and highlight the need for age- and exposure-sensitive approaches to understanding MS pathogenesis across the lifespan.
PMCID:12917236
PMID: 41728265
ISSN: 2632-1297
CID: 6009652
A Community-Engaged Approach for Assessment of Cortisol Dynamic Range and Multilevel Chronic Stress in African Americans: FAITH! Heart Health+ Ancillary Study
Ortiz, Robin; Joseph, Joshua; Johnson, Matthew P; Moen, Lainey; Lalika, Mathias; Jones, Clarence; Bancos, Irina; Cooper, Lisa A; Hayes, Sharonne N; Patten, Christi A; Brewer, LaPrincess C
BACKGROUND:Chronic stress in African American individuals is multilayered amid the context of experiences of racism and discrimination. Cortisol dynamic range (CDR) may be an indicator of chronic stress, but CDR is understudied in African American populations compared with White populations, and is hypothesized to differ by sex. OBJECTIVE:Using a community-engaged approach within the Fostering African-American Improvement in Total Health! (FAITH!) Heart Health+ ancillary study, we assessed the feasibility of participant-centric CDR collection, and its association with measures for individual, interpersonal, and structural stress and exposure to racism in medically underserved African American women and men. METHODS:Participants residing in the Minneapolis-St Paul and Rochester, Minnesota areas provided survey data (everyday discrimination, perceived stress, mood, sleep quality, and high effort coping measures), and saliva samples (morning and afternoon) via at-home, self-collection kits for cortisol measurement. CDR was calculated as a difference in log cortisol levels (ie, log of the cortisol diurnal peak-to-nadir ratio). Geospatial Area Deprivation Index and the distance lived from George Floyd Square in Minneapolis were calculated. Linear regression examined the association between CDR and outcome variables. RESULTS:Of consented participants (n=53), 70% (37/53) provided cortisol samples. The final analytic sample included 32 participants with complete and physiological diurnal cortisol curves (mean age 57.5 years, 62.5% [20/32] women). Lower (less dynamic) CDR in women (n=20) was associated with greater perceived stress (β=-0.07, P=.01), greater anxiety (β=-0.06, P=.01), higher Superwoman Schema score (β=-0.02, P=.04), and greater distance from George Floyd Square (β=-0.02, P=.01). No associations were observed in men (P>.05). CONCLUSIONS:The current results suggest that CDR from participant-led saliva collection is feasible and may serve as a biomarker of chronic and physiological stress in African American women, particularly those residing in underresourced areas.
PMID: 41325600
ISSN: 2152-7202
CID: 5974702
A Just Appraisal: Co-creating a New Health Equity Framework with Learners through Journal Club to Evaluate the Literature
Mgbako, Ofole; Gonzalez, Cristina M; Olagun-Samuel, Christine; Torres, Christian; Richardson, Safiya; Williams, Renee; Greene, Richard E; Ortiz, Robin
BACKGROUND:Health equity is receiving increased attention in medical education. However, guidance is often lacking on how to integrate health equity into routine medical education. Journal club presents an opportunity to deepen medical educators' and learners' understanding of health equity principles and use it as a lens through which to critically appraise the literature. AIM/OBJECTIVE:We present a health equity framework, iteratively co-created by faculty and learners, that can be applied in a journal club setting. SETTING/METHODS:Academic medical center in New York City, USA. PARTICIPANTS/METHODS:Faculty, residency program directors, medical students, and residents. PROGRAM DESCRIPTION/METHODS:Authors developed the health equity journal club framework during a medical student selective course. Learner and faculty applied the framework to journal club articles; their feedback informed revisions. Framework domains included authorship, ethics, methodology, language, peer review, and references. PROGRAM EVALUATION/RESULTS:Learner evaluations were overall positive, and 86% (n = 13) of responding residency program directors (n = 15) across 15 departments who were surveyed plan to use the framework moving forward. DISCUSSION/CONCLUSIONS:A health equity journal club framework applied to critical appraisal of the literature may facilitate health equity as a routine part of medical education. Co-creating the framework proved vital to inclusion of learner voices.
PMID: 40760378
ISSN: 1525-1497
CID: 5904892
Considering How the Caregiver-Child Dyad Informs the Promotion of Healthy Eating Patterns in Children
Nita, Abigail; Ortiz, Robin; Chen, Sabrina; Chicas, Vanessa E; Schoenthaler, Antoinette; Pina, Paulo; Gross, Rachel S; Duh-Leong, Carol
Although it is known that caregiver dietary behaviors influence child eating patterns, a gap remains in addressing the diet of a caregiver as much as their child in pediatric practice. A dyadic (caregiver-child) dietary approach would enhance the promotion of healthy eating patterns in children (and their caregivers) and achieve the population health goal of healthy eating across demographic groups. This study aimed to understand factors influencing dyadic dietary patterns (concordance, discordance) and contexts. Twenty professionals who provide nutrition-related expertise for families were recruited via maximum variation sampling. Qualitative thematic analysis of semi-structured interviews revealed 3 themes: (1) variable professional perspectives on what constitutes "healthy eating," (2) eating patterns of a child in the setting of variable caregiver eating practices, and (3) challenges to the promotion of a healthy caregiver-child dyadic diet within a social context. The results offer insight for future interventions that promote positive intergenerational transmission of health.
PMID: 40411197
ISSN: 1938-2707
CID: 5853812
Child, Family and Societal Factors Related to Neglect Recurrence After CPS Investigation
Ortiz, Robin; Palusci, Vincent J
Identifying families with increased risk and preventing child neglect recurrence are important goals for the child protection system and the public health priority to mitigate Adverse Childhood Experiences (ACEs). While much has been studied about the factors leading to neglect, less is known about the specific factors contributing to neglect recurrence after CPS investigation. We used Child Files from FY2015-2020 in the National Child Abuse and Neglect Data System and the Neglect and Prevention Policies Dataset to first describe recurrence and then to identify the contributions of child, family, report characteristics, state neglect definitions, and CPS post investigation service referrals. We found that confirmed child maltreatment of all types most often recurs as neglect, but there are also significant proportions of children who have a second confirmed report with the same type of maltreatment. There are significant associations with neglect recurrence for exposures at all levels of the socioecological model including some child, family and report factors, and more state definitions are associated with more confirmed neglect recurrence. The effects of race were blunted when adjusted for family financial factors. Some post-investigation services were associated with decreased neglect recurrence, but most were not. CPS agencies and states can look for certain case characteristics and provide services to reduce neglect recurrence.
PMID: 40433742
ISSN: 1552-6119
CID: 5855332
Childhood Food Insecurity Trajectories and Adult Weight and Self-Reported Health
Liu, Olivia C; Ortiz, Robin; Baidal, Jennifer Woo; Pierce, Kristyn A; Perrin, Eliana M; Duh-Leong, Carol
INTRODUCTION/BACKGROUND:Research has demonstrated that food insecurity during childhood is associated with worse physical and mental health in childhood. However, little is known about how food insecurity during childhood impacts health outcomes in young adulthood. METHODS:This study analyzed data from the Future of Families and Child Wellbeing Study (2024), a longitudinal birth cohort study of children born in 1998-2000. Childhood food insecurity trajectory groups from age 3 to 15 years were identified using group-based trajectory modeling. Associations between childhood food insecurity trajectory groups and young adult weight (BMI, overweight status, and obese status) and high self-reported health (good/excellent) at age 22 were modeled with multivariate linear and logistic regression. RESULTS:Three trajectories were identified among 4,296 participants: 66.9% were food secure, 7.5% were food insecure, and 25.6% transitioned from being food insecure-to-secure throughout childhood. In adjusted analyses, young adults assigned to the food insecure-to-secure trajectory group as children had higher BMI (B 0.82, 95% CI [0.07-1.58]) and higher odds of overweight status (OR 1.24, 95% CI [1.01-1.52]) than young adults assigned to the food secure trajectory group as children. Young adults in the food insecure trajectory group as children had lower odds of high self-reported health than those in the food secure trajectory group as children (OR 0.65, 95% CI [0.48-0.89]). CONCLUSIONS:Food insecurity in childhood is associated with high weight status and poor self-reported health in young adulthood. These findings highlight the importance of childhood food insecurity screening and interventions to promote health throughout the life course.
PMID: 40339828
ISSN: 1873-2607
CID: 5839432
Leveraging Patients' Interest in Lifestyle Medicine: A Growth Opportunity for Providers and the Health Care System
Ortiz, Robin; McMacken, Michelle; Massar, Rachel; Albert, Stephanie L
PMCID:11994630
PMID: 40237024
ISSN: 1559-8284
CID: 5828052
Childhood adversity in parents of patients with pediatric multiple sclerosis
O'Neill, Kimberly A; Charvet, Leigh; George, Allan; Waltz, Michael; Casper, T Charles; Benson, Leslie; Gorman, Mark; Mar, Soe; Ness, Jayne; Schreiner, Teri; Waubant, Emmanuelle; Weinstock-Guttman, Bianca; Wheeler, Yolanda; Ortiz, Robin; Krupp, Lauren B; ,
BACKGROUND:Childhood environmental factors back to the prenatal environment can contribute to MS risk. Childhood adversity, which causes biological, behavioral, and epigenetic changes that can be passed down through families, has been understudied in MS. Here, we emphasize the need to understand the role that intergenerational adversity may play among families affected by MS. OBJECTIVE:To evaluate the frequency and types of adverse childhood experiences among parents of children with MS. METHODS:Individuals with pediatric MS (n = 68) were enrolled in a longitudinal study of cognition. At enrollment, the patient and one caregiver or parent completed questionnaires. As the pediatric participants were under age 18 at time of enrollment, one parent completed the Adverse Childhood Experiences (ACEs, a 10-item self-report measure) about the parents' own childhood. Results from the ACE questionnaire among parents of pediatric healthy controls (n = 96) and adults in a national cohort are also reported for comparison. RESULTS:Over half of pediatric MS parents reported at least one ACE exposure. Of parents that did have ACE exposures, the exposures were broad in terms of abuse, neglect, and household dysfunction. Over 10 % of parents reported total ACE scores of 7 or above. CONCLUSION/CONCLUSIONS:Over half of pediatric MS parents experienced some degree of childhood adversity. The impact of intergenerational adversity on the development of pediatric onset MS warrants further study.
PMID: 40215565
ISSN: 2211-0356
CID: 5824342