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27 result(s) for "Russell, K. Brooke"
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Psychosocial risk, symptom burden, and concerns in families affected by childhood cancer
Purpose The revised Psychosocial Assessment Tool (PATrev) is a common family-level risk-based screening tool for pediatric oncology that has gained support for its ability to predict, at diagnosis, the degree of psychosocial support a family may require throughout the treatment trajectory. However, ongoing screening for symptoms and concerns (e.g., feeling alone, understanding treatment) remains underutilized. Resource limitations necessitate triaging and intervention based on need and risk. Given the widespread use of the PATrev, we sought to explore the association between family psychosocial risk, symptom burden (as measured by the revised Edmonton Symptom Assessment System (ESAS-r)), and concerns (as measured by the Canadian Problem Checklist (CPC)). Methods Families ( n  = 87) with children ≤ 18 years of age ( M  = 11.72, male: 62.1%) on or off treatment for cancer were recruited from the Alberta Children’s Hospital. One parent from each family completed the PATrev and the CPC. Participants 8–18 years of age completed the ESAS-r. Results. Risk category (universal/low risk = 67.8%, targeted/intermediate risk = 26.4%, clinical/high risk = 5.7%) predicted symptom burden ( F [2, 63.07]  = 4.57, p  = .014) and concerns ( F [2, 82.06]  = 16.79, p  < .001), such that universal risk was associated with significantly lower symptom burden and fewer concerns. Conclusion Family psychosocial risk is associated with cross-sectionally identified concerns and symptom burden, suggesting that resources might be prioritized for families with the greatest predicted need. Future research should evaluate the predictive validity of the PATrev to identify longitudinal concerns and symptom burden throughout the cancer trajectory.
Fear of cancer recurrence experienced by pediatric survivors of childhood cancer: a scoping review
Purpose In contrast to the extensive literature on fear of cancer recurrence (FCR) experienced by adults, literature evaluating pediatric FCR has just begun to emerge. Given the rapidly expanding body of work assessing FCR in childhood and adolescence, a scoping review was conducted to synthesize existing findings. We aimed to assess (1) the characteristics and methods of this literature, (2) how pediatric FCR has been measured, and (3) the extant knowledge of FCR experienced by pediatric survivors of cancer. Methods Inclusion criteria were: (1) original reports, (2) participants diagnosed with cancer before age 18, (3) current mean age under 18, (4) FCR was explicitly measured (quantitatively) or captured (qualitatively) via survivor self-report, and (6) published in English. Exclusion criteria were: (1) case studies, and (2) grey literature. Three databases (Embase, MEDLINE, PsycINFO) and reference lists from included studies were searched. All studies were screened for inclusion by two authors and all data were extracted by a single author. Results Of 3906 identified studies, 19 were included. Studies (published 1991 – 2023) encompassed diverse geographical locations, study designs, and measurement methods. Few assessed FCR as a primary aim (n = 6, 32%). FCR was experienced by 43 – 90% of pediatric survivors. FCR was often positively associated with somatic symptoms and negatively associated with quality of life and emotional functioning. Conclusion FCR is a prevalent issue for children and adolescents. Additional evidence is needed to explore and confirm preliminary findings. Future pediatric FCR studies should aim to align with published priority research areas.
Making sense of the cancer journey: Pediatric cancer survivors’ and their parents’ autobiographical memories
PurposeYouth diagnosed with acute lymphoblastic leukemia (ALL) and their caregiver’s experience a myriad of challenges in all domains of health that extend beyond treatment. Yet, little is known about how the cancer experience, and recollections associated with the experience, impact survivorship. We explored pediatric ALL survivors’ and their caregivers’ autobiographical memories of the cancer experience from diagnosis onwards.MethodsSurvivors of ALL, and one of their caregivers, were recruited through a local clinic. Survivors and their caregivers completed a demographic survey and semi-structured, private, one-on-one interviews. Demographic information were analyzed using descriptive statistics. Interviews were transcribed verbatim and analyzed using reflexive thematic analysis at the level of the individual and dyad.ResultsInsights from survivors (N = 19; Mage = 15.3 years) and their caregivers (n = 19; Mage = 45.4 years) were captured. Analyses generated two themes contingent on role (i.e., survivor or caregiver): (1) It is hard to recall my cancer experience and (2) We did as much as we could to manage our child’s cancer experience and two unified themes (present in both survivors and their caregivers): (3) It took a village to get through the cancer experience and (4) The cancer diagnosis and experience has had a lasting impact.ConclusionsFindings highlight the varied and long-lasting ways cancer impacts survivors of pediatric ALL and their caregivers. Survivors had difficultly remembering their experience or felt that information was withheld and were acutely aware of their caregiver’s distress. Caregivers were cautious and intentionally limited the information they shared.Implications for cancer survivorsSurvivors desired to be included within, or told about, decisions related to their healthcare and were acutely aware of their caregiver’s distress. Efforts should be made to communicate with survivors (from diagnosis onward) openly and to consider strategies to minimize the short- and long-term impacts of pediatric ALL among survivors and their caregivers.
End-of-Life Symptom Burden among Patients with Cancer Who Were Provided Medical Assistance in Dying (MAID): A Longitudinal Propensity-Score-Matched Cohort Study
Cancer is the primary underlying condition for most Canadians who are provided Medical Assistance in Dying (MAID). However, it is unknown whether cancer patients who are provided MAID experience disproportionally higher symptom burden compared to those who are not provided MAID. Thus, we used a propensity-score-matched cohort design to evaluate longitudinal symptom trajectories over the last 12 months of patients’ lives, comparing cancer patients in Alberta who were and were not provided MAID. We utilized routinely collected retrospective Patient-Reported Outcomes (PROs) data from the Edmonton Symptom Assessment System (ESAS-r) reported by Albertans with cancer who died between July 2017 and January 2019. The data were analyzed using mixed-effect models for repeated measures to compare differences in symptom trajectories between the cohorts over time. Both cohorts experienced increasing severity in all symptoms in the year prior to death (β from 0.086 to 0.231, p ≤ .001 to .002). Those in the MAID cohort reported significantly greater anxiety (β = −0.831, p = .044) and greater lack of appetite (β = −0.934, p = .039) compared to those in the non-MAID cohort. The majority (65.8%) of patients who received MAID submitted their request for MAID within one month of their death. Overall, the MAID patients did not experience disproportionally higher symptom burden. These results emphasize opportunities to address patient suffering for all patients with cancer through routine collection of PROs as well as targeted and early palliative approaches to care.
Premature Ovarian Insufficiency in Childhood Cancer Survivors: A Report From the St. Jude Lifetime Cohort
Context:Long-term follow-up data on premature ovarian insufficiency (POI) in childhood cancer survivors are limited.Objective:To describe the prevalence of POI, its risk factors, and associated long-term adverse health outcomes.Design:Cross-sectional.Setting:The St. Jude Lifetime Cohort Study, an established cohort in a tertiary care center.Patients:Nine hundred twenty-one participants (median age, 31.7 years) were evaluated at a median of 24.0 years after cancer diagnosis.Main Outcome Measure:POI was defined by persistent amenorrhea combined with a follicle-stimulating hormone level >30 IU/L before age 40. Multivariable Cox regression was used to study associations between demographic or treatment-related risk factors and POI. Multivariable logistic regression was used to study associations between POI and markers for cardiovascular disease, bone mineral density (BMD), and frailty. Exposure to alkylating agents was quantified using the validated cyclophosphamide equivalent dose (CED).Results:The prevalence of POI was 10.9%. Independent risk factors for POI included ovarian radiotherapy at any dose and CED ≥8000 mg/m2. Patients with a body mass index ≥30 kg/m2 at the time of the St. Jude Lifetime Cohort assessment were less likely to have a diagnosis of POI. Low BMD and frailty were independently associated with POI.Conclusion:High-dose alkylating agents and ovarian radiotherapy at any dose are associated with POI. Patients at the highest risk should be offered fertility preservation whenever feasible. POI contributes to poor general health outcomes in childhood cancer survivors; further studies are needed to investigate the role of sex hormone replacement in improving such outcomes.We report on the prevalence, risk factors, and consequences on general health of premature ovarian insufficiency in a cohort of 921 long-term survivors of childhood cancers.
Mismatch Repair and Microsatellite Instability Testing for Immune Checkpoint Inhibitor Therapy: Guideline From the College of American Pathologists in Collaboration With the Association for Molecular Pathology and Fight Colorectal Cancer
The US Food and Drug Administration (FDA) approved immune checkpoint inhibitor therapy for patients with advanced solid tumors that have DNA mismatch repair defects or high levels of microsatellite instability; however, the FDA provided no guidance on which specific clinical assays should be used to determine mismatch repair status. To develop an evidence-based guideline to identify the optimal clinical laboratory test to identify defects in DNA mismatch repair in patients with solid tumor malignancies who are being considered for immune checkpoint inhibitor therapy. The College of American Pathologists convened an expert panel to perform a systematic review of the literature and develop recommendations. Using the National Academy of Medicine-endorsed Grading of Recommendations Assessment, Development and Evaluation approach, the recommendations were derived from available evidence, strength of that evidence, open comment feedback, and expert panel consensus. Mismatch repair immunohistochemistry, microsatellite instability derived from both polymerase chain reaction and next-generation sequencing, and tumor mutation burden derived from large panel next-generation sequencing were within scope. Six recommendations and 3 good practice statements were developed. More evidence and evidence of higher quality were identified for colorectal cancer and other cancers of the gastrointestinal (GI) tract than for cancers arising outside the GI tract. An optimal assay depends on cancer type. For most cancer types outside of the GI tract and the endometrium, there was insufficient published evidence to recommend a specific clinical assay. Absent published evidence, immunohistochemistry is an acceptable approach readily available in most clinical laboratories.
Local proliferation maintains a stable pool of tissue-resident memory T cells after antiviral recall responses
Although tissue-resident memory T cells (T RM cells) are critical in fighting infection, their fate after local pathogen re-encounter is unknown. Here we found that skin T RM cells engaged virus-infected cells, proliferated in situ in response to local antigen encounter and did not migrate out of the epidermis, where they exclusively reside. As a consequence, secondary T RM cells formed from pre-existing T RM cells, as well as from precursors recruited from the circulation. Newly recruited antigen-specific or bystander T RM cells were generated in the skin without displacement of the pre-existing T RM cell pool. Thus, pre-existing skin T RM cell populations are not displaced after subsequent infections, which enables multiple T RM cell specificities to be stably maintained within the tissue. Mackay, Mueller and colleagues show that tissue-resident memory T cells proliferate in situ in response to local antigen and persist during subsequent antigen encounters.
MONITORING AND UNDERSTANDING CHANGES IN HEAT WAVES, COLD WAVES, FLOODS, AND DROUGHTS IN THE UNITED STATES
Weather and climate extremes have been varying and changing on many different time scales. In recent decades, heat waves have generally become more frequent across the United States, while cold waves have been decreasing. While this is in keeping with expectations in a warming climate, it turns out that decadal variations in the number of U.S. heat and cold waves do not correlate well with the observed U.S. warming during the last century. Annual peak flow data reveal that river flooding trends on the century scale do not show uniform changes across the country. While flood magnitudes in the Southwest have been decreasing, flood magnitudes in the Northeast and north-central United States have been increasing. Confounding the analysis of trends in river flooding is multiyear and even multidecadal variability likely caused by both large-scale atmospheric circulation changes and basin-scale “memory” in the form of soil moisture. Droughts also have long-term trends as well as multiyear and decadal variability. Instrumental data indicate that the Dust Bowl of the 1930s and the drought in the 1950s were the most significant twentieth-century droughts in the United States, while tree ring data indicate that the megadroughts over the twelfth century exceeded anything in the twentieth century in both spatial extent and duration. The state of knowledge of the factors that cause heat waves, cold waves, floods, and drought to change is fairly good with heat waves being the best understood.
Stress and Health Outcomes in Midwestern Latinx Youth: The Moderating Role of Ethnic Pride
Background: Stress has been linked to numerous health outcomes, including internalizing and externalizing behaviors, self-esteem, and physical health. Culture has also been linked to stress and health. This study examined the links between stress and health, and the potential moderating role of Latinx ethnic pride (LEP). Methods: The sample consisted of 119 Latinx youth from the Midwestern U.S. Mothers and youth completed surveys. Variables included the Multicultural Events Scale for Adolescents (MESA), parent and home stressors/risks (PHSR), LEP, depressive symptoms, aggression, frustration, and self-esteem. Research assistants measured child heights and weights and calculated BMI percentiles. Results: LEP was negatively related to MESA, depressive symptoms, aggression, and frustration, and positively related to self-esteem. MESA and PHSR were associated with depressive symptoms, aggression, frustration, and self-esteem, but not with BMI percentile. In adjusted regression analyses, LEP moderated the effects MESA had on frustration and self-esteem, marginally moderated the link between MESA and depressive symptoms, and was not related to aggression or BMI percentile. LEP did not moderate the relationship between PHSR with any health outcomes. Conclusions: Stressors were generally related to child mental health. LEP may play an important role in protecting against some of the effects of stressful events on mental health outcomes.
Individual- and neighborhood-level characteristics of lung cancer screening participants undergoing telemedicine shared decision making
Background Although lung cancer screening (LCS) for high-risk individuals reduces lung cancer mortality in clinical trial settings, many questions remain about how to implement high-quality LCS in real-world programs. With the increasing use of telemedicine in healthcare, studies examining this approach in the context of LCS are urgently needed. We aimed to identify sociodemographic and other factors associated with screening completion among individuals undergoing telemedicine Shared Decision Making (SDM) for LCS . Methods This retrospective study examined patients who completed Shared Decision Making (SDM) via telemedicine between May 4, 2020 – March 18, 2021 in a centralized LCS program. Individuals were categorized into Complete Screening vs. Incomplete Screening subgroups based on the status of subsequent LDCT completion. A multi-level, multivariate model was constructed to identify factors associated with incomplete screening. Results Among individuals undergoing telemedicine SDM during the study period, 20.6% did not complete a LDCT scan. Bivariate analysis demonstrated that Black/African-American race, Medicaid insurance status, and new patient type were associated with greater odds of incomplete screening. On multi-level, multivariate analysis, individuals who were new patients undergoing baseline LDCT or resided in a census tract with a high level of socioeconomic deprivation had significantly higher odds of incomplete screening. Individuals with a greater level of education experienced lower odds of incomplete screening. Conclusions Among high-risk individuals undergoing telemedicine SDM for LCS, predictors of incomplete screening included low education, high neighborhood-level deprivation, and new patient type. Future research should focus on testing implementation strategies to improve LDCT completion rates while leveraging telemedicine for high-quality LCS.