Additional Psychosocial Support Research Articles

Abstract C070: Barriers to genomic testing reduce clinical trial eligibility for diverse populations

Abstract Tumor genomic testing and cancer clinical trials expand access to precision therapeutics, enhancing patient experience. However, physician and patient barriers impact participation of historically underrepresented patients (HUP), limiting generalizability for those most negatively affected by cancer. We interviewed patients to identify factors impacting genomic testing uptake and clinical trial enrollment. From 09/2021 - 12/2021 we interviewed 16 HUP diagnosed with cancer seen at an ambulatory oncology center: 3 spoke a language other than English, 9 identified as Black, 6 Hispanic/Latinx, 3 other race, and 3 older adult (age 70+). Individual interviews utilized a structured interview guide and lasted 45 minutes. Participants were recruited until thematic saturation was reached and transcripts were coded for major themes. Patients were unsure if they received genomic testing or if testing was recommended (citing possible confusion with medical information). Barriers included education (unclear benefit to participation, investigational drug/device identity, procedures involved), mistrust of research (data privacy concerns), and logistical accessibility (cost, time away from work, transportation). Those tested found it to be an easy process. Several cited that a patient advocate would be a beneficial resource to navigate the process. Barriers around clinical trial enrollment included education (risks of participating, size of the study, investigational drug/device identity), mistrust of research (data privacy, inclusion of HUP in trial, loss of autonomy in decision-making), and logistical accessibility (time commitment). HUP who participated in a trial appreciated additional psychosocial support and clinical monitoring. Patients were emphatically interested in genomic testing and cancer clinical trials when presented as the best course of care, though concerns about side effects from trials persisted. Patient barriers to genomic testing and clinical trials center around education, mistrust in research, and logistical accessibility. Patients who participated in genomic testing and clinical trials had a positive experience. Barriers may be addressed with tailored education, including supportive resources referral. Citation Format: Nadine J. McCleary. Barriers to genomic testing reduce clinical trial eligibility for diverse populations [abstract]. In: Proceedings of the 17th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2024 Sep 21-24; Los Angeles, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2024;33(9 Suppl):Abstract nr C070.

Patterns of antidepressant use among older adults in Northern Ireland: An administrative data study.

ObjectiveOver recent decades, there has been a noticeable increase in the prescription of antidepressant medications, particularly among older adults. This study examines the relationship between health outcomes and patterns of antidepressant use among older adults in Northern Ireland (NI). ApproachParticipants included all (General Practitioner) GP-registered hospital patients aged fifty-five years and above on 01/01/2010 (n =395,872). Administrative data linkage included demographic information (age, sex; urbanicity); data on antidepressant use from the NI Enhanced Prescribing Database (EPD); and hospital patient admissions/discharges. Repeated measures latent class analysis (RMLCA) identified patterns of antidepressant use (2010 to 2020) in relation to the association between these patterns and health-related outcomes in 2021. ResultsRMLCA identified four latent classes : long-term antidepressant use (17.4%); decreasing antidepressant use (7.1%); increasing antidepressant use (8.4%); no-antidepressant use (67.1%). Those in the long-term and increasing antidepressant use’ classes had the highest average number of hospital visits and recorded chronic conditions in 2021. ConclusionFindings show that two distinct subgroups (comprising 26% of the hospital population) were disproportionately impacted by increased antidepressant prescription rates. Because of their increased likelihood of experiencing higher ill-health, these people are crucial targets for additional psychosocial support. ImplicationsAnalyses of this kind emphasize the importance of widening access to administrative data, enabling researchers to identify and examine at-risk groups allowing more targeted policymaking to better address their needs. Data for this project was provided by the HSC Honest Broker Service; any views or opinions presented are solely those of the author.

Abstract 2231: Impact of sociodemographic and clinical factors on symptom burden in the young adult primary central nervous system tumor population

Abstract Purpose: The goal of this analysis was to provide insight into differences in perceived symptom burden and general health status between young adults (YA; 18-39 years of age) and older adults (OA; ≥ 40 years of age) with primary central nervous system (PCNS) tumors. Determining differences in characteristics that impact symptom burden and general health status in YA will allow for tailored survivorship programs that meet the unique needs of this population. Methods: Data were retrospectively analyzed from the National Cancer Institute Neuro-Oncology Branch’s Natural History Study (NCT02851706 PI: T.S. Armstrong), which is an observational prospective cohort study designed to follow and collect PROs and clinical information on patients diagnosed with PCNS tumors throughout their disease trajectory. Differences in patient-reported outcomes (general health status [EQ-5D-3L], symptom burden [MDASI-BT and MDASI-SP], anxiety/depression [PROMIS], and perceived cognition [Neuro-QOL]) and demographic and clinical data were assessed using chi-square tests, one-way ANOVAs, and Students’ t-tests. Linear regression with backward elimination determined which characteristics impacted perceived symptom burden and general health status as evidenced by MDASI-BT and EQ-5D-3L, respectively. Results: The sample included 271 YA (82% with a primary brain tumor [PBT]; median age 31 [range, 18-39]) and 516 OA (88% with a PBT; median age 54 [range, 40-85]). YA were more likely to be single (P<0.001), employed (P<0.001), and make < $50,000 per year (P=0.014). More YA reported pain (P=0.008), nausea (P<0.001), drowsiness (P=0.043), and vomiting (P=0.001) than OA. More YA presented with vision problems (25% of YA, 16% of OA), whereas more OA presented with cognitive deficits (17% of YA, 25% of OA). Compared to YA, 7% more OA with PBTs and 19% more OA with primary spinal tumors (PST) were diagnosed in outpatient clinics, whereas the majority of YA with PBTs (47%) were diagnosed in an emergency room. Among demographic and clinical characteristics, only Karnofsky Performance Scale score was a predictor of general health status (P<0.001) in YA with PCNS tumors and symptom interference (P=0.014) in YA with PBTs. YA reported more affective, cognitive, neurologic, treatment-related, generalized disease, and gastrointestinal symptom burden than OA, with the affective factor being the most severe among the symptom factors reported. Among individuals with PSTs, 20% more YA reported moderate-severe anxiety (P=0.050) and 32% more YA reported moderate-severe perceived cognitive deficits (P=0.023) than OA. Conclusion: YA patients were more likely to be single, employed, have a lower income, and report more symptom burden than OA. These findings underscore the need for tailored survivorship programs providing additional psychosocial support and resources to address symptom presentation in YA. Citation Format: Kimberly Reinhart, Tricia Kunst, Jennifer Reyes, Alvina Acquaye-Mallory, Ewa Grajkowska, Byram H. Ozer, Marta Penas-Prado, Jing Wu, Eric Burton, Lisa Boris, Marissa Panzer, Tina Pillai, Lily Polskin, Mark R. Gilbert, Elizabeth Vera, Terri S. Armstrong. Impact of sociodemographic and clinical factors on symptom burden in the young adult primary central nervous system tumor population [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2024; Part 1 (Regular Abstracts); 2024 Apr 5-10; San Diego, CA. Philadelphia (PA): AACR; Cancer Res 2024;84(6_Suppl):Abstract nr 2231.

Mental health problems among adolescents during the COVID-19 pandemic: a repeated cross-sectional study from Sweden.

Most international studies have concluded that exposure to the COVID-19 pandemic was associated with worse mental health. Sweden implemented lighter restrictions than many other countries. We evaluated the association between changes in exposure of COVID-19 restrictions and changes in mental health problems among Swedish adolescents. Repeated cross-sectional data were derived from the Stockholm school survey, mandatory for all students in municipal schools and voluntary for students in private schools. Unexposed students were assessed in the year 2020 and exposed were assessed in 2022. Mental health was assessed using items similar to the psychosomatic problem scale. All variables were dichotomised, and a non-parametric logistic regression was used to evaluate associations. A significant positive association was found between exposure of COVID-19 restrictions and self-reports of five to seven mental health problems a week for girls (odds ratio (OR) 1.29, 95% confidence interval (CI) 1.18-1.41), but a non-significant association was found for boys (also after controlling for relevant covariates). Among boys and girls (shown), changes in mental health during the pandemic were moderated by social support from parents (OR 2.23, 95% CI 1.98-2.51), bullying victimisation (OR 2.24, 95% CI 2.06-2.66), a sensation-seeking temperament (OR 1.40, 95% CI 1.24-1.58) and school achievement (OR 1.34, 95% CI 1.18-1.51). Compared with boys, adolescent girls self-reported worse mental health following COVID-19 exposure. Girls may have been more affected by social distancing regulations in Sweden during the pandemic than boys and may require additional psychosocial support post-pandemic. Social support from parents may play an important role.

High perceived stress in patients on opioid agonist therapies during rapid transitional response to the COVID-19 pandemic in Ukraine.

The COVID-19 pandemic resulted in marked disruptions in healthcare delivery in Ukraine related to emergency guidance in response to treating opioid use disorder (OUD). Patients with OUD, a group with high levels of comorbid medical and psychiatric disorders, and prescribed opioid agonist therapies (OAT) were rapidly shifted to take-home dosing if they were deemed clinically stable. The impact of these shifts on patient stress and related substance use during the pandemic, however, is unknown. In early May 2020, 269 randomly selected OAT patients in Ukraine were surveyed to assess their stress level and substance use using the validated Perceived Stress Scale and examined correlates of severe perceived stress. Overall, 195 (72.5%) met criteria for moderate to severe levels of stress, which was independently correlated with having started OAT within the past 12 months (aOR: 1.33; 95%CI: 1.15-1.55), living in a large metropolitan area (aOR: 1.31; 95%CI: 1.18-1.46), having been asked by others to share their medication (aOR: 1.13; 95%CI: 1.02-1.25), and having an increase of over 10 min in transportation time to get to treatment (aOR: 1.16; 95%CI: 1.04-1.29). Twenty seven (10%) patients felt at high risk of relapse, while 24 (8.9%) patients reported purchasing drugs. During a time of great uncertainty soon after emergency guidance to the COVID-19 pandemic, there was extraordinary high levels of perceived stress reported. In response to emergency guidance, OAT patients should be screened for perceived stress and certain subgroups should be targeted for additional psychosocial support.

Psychosocial issues of individuals undergoing surveillance for increased risk of melanoma and pancreatic cancer due to a germline CDKN2A variant: A focus group study.

Individuals with a germline CDKN2A pathogenic variant (PV) are at high risk of developing melanoma and pancreatic cancer and are therefore offered surveillance. The potential advantages and disadvantages associated with genetic testing and surveillance are discussed during medical counseling, although little is known about the associated psychosocial factors that are relevant to this population. This study sought to provide a qualitative exploration of psychosocial factors related to genetic testing and participation in skin and pancreatic surveillance in (potential) carriers of a CDKN2A PV. Fifteen individuals-both at-risk individuals and confirmed variant carriers-participated in one of the three online focus groups. Pre-defined discussion topics, including genetic testing, cancer surveillance, influence on lifestyle and family planning, were discussed. Patients reported that important reasons to engage in genetic testing included the possibility to participate in surveillance to gain control over their cancer risk and to get clarification on the potential carrier status of their children. We observed considerable differences in risk perception and experienced burden of surveillance. Knowledge of the PV has had a positive influence on lifestyle factors and altered attitudes toward life in some. Most participants were not aware of preimplantation genetic testing. This focus group study provided insight into a variety of psychosocial themes related to (potential) carriership of a CDKN2A PV. Future efforts should focus on identifying those who may benefit from additional psychosocial support, development of a centralized source of information, and assessing the knowledge, needs, and timing of counseling for family planning.

Health-Related Quality of Life Analysis in Patients with Non-Functioning Pituitary Macroadenomas Treated with Transsphenoidal Surgery with or without Radiation Therapy

The quality of life (QoL) impact of multidisciplinary treatment for patients with nonfunctioning pituitary macroadenomas (NFPMA) is unclear. We sought to assess patient-reported QoL in our institutional experience using a cross-sectional survey. We identified 488 patients with NFPMA treated at our institution from 1980-2010 who underwent transsphenoidal surgery (TSS) with or without adjuvant salvage therapy with radiation therapy (RT) and/or surgery. The following validated patient-reported outcome measures were collected: the RAND Short Form-36 Health Survey (SF-36), the Multidimensional Fatigue Inventory (MFI-20), and the Cognitive Failures Questionnaire (CFQ). Clinical characteristics of patients who did and did not receive RT were compared using Wilcoxon rank-sum test or Fisher's exact test. We used multivariable linear regression and reported mean score differences between comparison groups. The response rate to survey invitation was 47% (229 patients). Median age at the time of initial TSS was 55 years (18-85 years). 35% of patients were female. 25% of participants received RT a median of 2.0 years (0.1-22.5) after initial TSS, and 15% of patients had >1 additional surgery after initial TSS. The patients who received RT were younger (median age 46 v 58, p < 0.0001), had larger tumors (28 mm v 22 mm, p < 0.0001) and were more likely to have visual symptoms (65% v 34%, p = 0.0002 and were more likely to have hypopituitarism (93% v 62%, p < 0.0001). Patients completed QoL questionnaires a median of 7.7 years (1.3-29.9) after initial TSS, at which point patients with hypopituitarism reported worse energy and fatigue (SF-36 Energy/Fatigue: -7.95, p = 0.026) and cognitive function (CFQ: 5.35, p = 0.026). Patients who received RT reported significantly worse general health (SF-36 General Health Perceptions subscale: -8.44, p = 0.032), physical health (SF-36 Physical Health Composite: -4.07, p = 0.042), physical fatigue (MFI-20 Physical Fatigue subscale: 11.68, p = 0.024) and cognitive functioning (CFQ: 6.64, p = 0.0298). The largest QoL differences were seen in patients who experienced a financial stressor after treatment, independent of treatment type. These patients reported significantly worse QoL for most outcomes, including emotional well-being, physical and mental health, social functioning, energy level, and motivation. RT was associated with self-reported unstable/insecure or very dire financial circumstances (28% v 7%, p < 0.0001). Hypopituitarism, radiation therapy after TSS, and financial stressors are associated with decreased QoL in several domains, and these factors may identify patients who can benefit most from early multidisciplinary care, including financial counseling and additional psychosocial support.

Prospective evaluation of return to work, health-related quality of life and psychosocial distress after radical cystectomy: 1-year follow-up in 230 employed German bladder cancer patients.

To evaluate return to work (RTW), health-related quality of life (HRQoL) and psychosocial distress (PD) after radical cystectomy (RC) and creation of an ileal conduit (IC) or an orthotopic ileal neobladder (NB) for bladder cancer. The study relied on prospectively collected data for 842 patients, who underwent 3weeks of inpatient rehabilitation (IR) after surgery between April 2018 and December 2019. HRQoL (EORTC QLQ-C30) and PD (Questionnaire on Stress in Cancer Patients [QSC-R10]) were evaluated at the beginning (T1) and end (T2) of IR as well as both 6 (T3) and 12months after surgery (T4). Regression analyses were performed to identify predictors of HRQoL and RTW, respectively. Two hundred thirty patients (IC n = 51, NB n = 179) were employed before surgery (27.3%). HRQoL improved steadily, while high PD was present in 51.0% of patients at T4. RTW rate was 86.8 and 80.6% at T3 and T4, respectively. Linear regression analysis identified RTW as the only predictor for better HRQoL at T4 (OR [odds ratio] 12.823, 95% CI [confidence interval] 2.927-22.720, p = 0.012). Multivariate regression analysis identified age ≤ 59years (OR 7.842; 95% CI 2.495-24.645; p < 0.001) as an independent positive predictor and lymph node metastasis (OR 0.220; 95% CI 0.054-0.893; p = 0.034) as an independent negative predictor of RTW at T4. Global HRQoL improved steadily during the follow-up and RTW rates are high. However, patients often reported high PD, reflecting a need for additional psychosocial support within aftercare.

Long-term social and professional outcomes in adults after pediatric kidney failure

BackgroundLittle is known about the long-term social and professional outcomes in adults after pediatric kidney replacement therapy (KRT). In this study, we described social and professional outcomes of adults after kidney failure during childhood and compared these outcomes with the general population.MethodsWe sent a questionnaire to 143 individuals registered in the Swiss Pediatric Renal Registry (SPRR) with KRT starting before the age of 18 years. In the questionnaire, we assessed social (partner relationship, living situation, having children) and professional (education, employment) outcomes. Logistic regression models adjusted for age at study and sex were used to compare outcomes with a representative sample of the Swiss general population and to identify socio-demographic and clinical characteristics associated with adverse outcomes.ResultsOur study included 80 patients (response rate 56%) with a mean age of 39 years (range 19–63). Compared to the general population, study participants were more likely to not have a partner (OR = 3.7, 95%CI 2.3–5.9), live alone (OR = 2.5, 95%CI 1.5–4.1), not have children (OR = 6.8, 95%CI 3.3–14.0), and be unemployed (OR = 3.9, 95%CI 1.8–8.6). No differences were found for educational achievement (p = 0.876). Participants on dialysis at time of study were more often unemployed compared to transplanted participants (OR = 5.0, 95%CI 1.2–21.4) and participants with > 1 kidney transplantation more often had a lower education (OR = 3.2, 95%CI 1.0–10.2).ConclusionsAdults after pediatric kidney failure are at risk to experience adverse social and professional outcomes. Increased awareness among healthcare professionals and additional psycho-social support could contribute to mitigate those risks.Graphical abstractA higher resolution version of the Graphical abstract is available as Supplementary information

Abstract 5524: Persistent patient barriers to genomic testing in ambulatory oncology

Abstract Purpose: Tumor genomic testing and cancer clinical trial enrollment provide key access to precision cancer therapeutics and supportive care options to enhance the patient experience. However, physician and patient barriers limit participation of patients who are historically underrepresented in genomic studies and clinical trials [historically underrepresented patients (HUP)], thereby decreasing generalizability for those most negatively affected by cancer diagnosis. We interviewed patients to identify factors impacting genomic testing uptake and clinical trial enrollment. Methods: From 09/2021 - 12/2021 we interviewed 16 patients diagnosed with cancer seen at an ambulatory oncology center. Patients were HUP (Black, American Indian or Alaska Native, Native Hawaiian or other Pacific Islander, Hispanic/Latinx, or older adult [70 years or older], or from a low-income zip code). From non-inclusive groups, patients identified as: 3 primarily spoke a language other than English, 9 Black, 3 other race, 6 Hispanic, and 3 aged 70 years or older. One-on-one interviews utilized a structured interview guide and lasted approximately 45 minutes. Participants were recruited until thematic saturation was reached then transcripts coded for major patterns and themes. Results: Regarding tumor genomic testing, many patients were unsure if they received testing or if testing was recommended (citing possible confusion with medical terminology or overwhelm with information). Cited barriers included education (not understanding the benefit of participating, investigational drug/device identity, the procedures and processes involved), mistrust of research (specifically concerns over data privacy); and logistical accessibility (cost, time away from work, transportation). Those tested found it to be an easy process. Several cited that a patient advocate or social worker would be beneficial to navigate the process. Barriers around clinical trial enrollment included education (the risks of participating/side effects, size of the study, investigational drug/device identity), mistrust of research (data privacy, inclusion of HUP in trial, loss of autonomy in decision making), and logistical accessibility (time commitment). HUP who participated in a clinical trial appreciated the additional psychosocial support and clinical monitoring. Patients were emphatically interested in participating in genomic testing and cancer clinical trials when presented as the best course of care, though concerns about side effects from clinical trials persisted. Conclusion: Patient barriers to tumor genomic testing and cancer clinical trials center around education, mistrust in research, and logistical accessibility. Patients who participated in genomic testing and clinical trials did have a positive experience. Barriers may be addressed with personalized education and coaching, including supportive resources referral. Citation Format: Ellana K. Haakenstad, Jane Roberts, Anna C. Revette, Wendy Loeser, Joseph Grider, Andrea Kruse, Alissa Gentile, Rachel Freedman, Neal I. Lindeman, Olga Kozyreva, Pedro Sanz-Altamira, Christopher S. Lathan, Michael Hassett, Ethan Cerami, Annette S. Kim, Danielle K. Manning, Jonathan Nowak, Marios Giannakis, R Coleman Lindsley, William C. Hahn, Barrett J. Rollins, Levi Garraway, Bruce E. Johnson, Nadine Jackson McCleary. Persistent patient barriers to genomic testing in ambulatory oncology. [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2023; Part 1 (Regular and Invited Abstracts); 2023 Apr 14-19; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2023;83(7_Suppl):Abstract nr 5524.

Exploring the impact of the reclassification of a hereditary cancer syndrome gene variant: emerging themes from a qualitative study

The complexity of genetic variant interpretation means that a proportion of individuals who undergo genetic testing for a hereditary cancer syndrome will have their test result reclassified over time. Such a reclassification may involve a clinically significant upgrade or downgrade in pathogenicity, which may have significant implications for medical management. To date, few studies have examined the psychosocial impact of a reclassification in a hereditary cancer syndrome context. To address this gap, semi-structured telephone interviews were performed with eighteen individuals who had a BRCA1, BRCA2 or Lynch syndrome-related (MLH1, MSH2, MSH6 or PMS2) gene variant reclassified. The interviews were analysed utilising an inductive, qualitative approach and emergent themes were identified by thematic analysis. Variable levels of recall amongst participants were found. Common motivations for initial testing included a significant personal and/or family history of cancer and a desire to “find an answer”. No individual whose uncertain result was upgraded reported negative psychosocial outcomes; most reported adapting to their reclassified result and appraised their genetic testing experience positively. However, individuals whose likely pathogenic/pathogenic results were downgraded reported feelings of anger, shock and sadness post reclassification, highlighting that additional psychosocial support may be required for some. Genetic counselling issues and recommendations for clinical practice are outlined.

Psychosocial impact of COVID-19 on caregivers and adolescents and young adult survivors of childhood cancer.

Caregivers and adolescents and young adult (AYA) cancer survivors may be at greater psychosocial risk from the COVID-19 pandemic than healthy peers due to complex and traumatic medical histories. This study describes COVID-19-related event exposures, impact, and distress among a large sample of caregivers and AYA cancer survivors and the relationship of these variables to demographic and cancer characteristics. From May 2020 to December 2021, 422 caregivers and 531 AYA survivors completed the COVID-19 Exposures and Family Impact Survey (CEFIS) and CEFIS-AYA, respectively. Total COVID-19-related exposures, average COVID-19-related impact, and COVID-19-related distress were calculated. Conventional content analysis was used to analyze free-text responses about the negative and positive effects of COVID-19. Caregivers and AYA reported an average of 7.4-7.8 COVID-19 exposures to pandemic-related events and a slightly negative impact of COVID-19 across psychosocial domains, with some positive impacts reported. COVID-19-related distress was moderate and clinically meaningful (4.9-5.2/10) for AYA and caregivers. Racial and ethnically minoritized AYA and caregivers reported higher COVID-19-related distress than non-Hispanic white caregivers. For AYA, distress was also higher among female, college-age (18-22 years), and long-term survivors compared with males, younger AYA, White and those recently off treatment. CEFIS outcomes remained relatively stable over time. COVID-19 had a significant and consistent negative impact on caregivers and AYA survivors. Racial and ethnically minoritized families and female, college-age, and long-term AYA survivors may require additional psychosocial support. Assessing for COVID-19 impact and distress is important in pediatric oncology to evaluate adjustment and plan targeted interventions.

"There's no playbook for when your kid has cancer": Desired elements of an electronic resource to support pediatric cancer communication.

Acute lymphoblastic leukemia (ALL), the most common childhood malignancy, has a relatively favorable long-term prognosis. Yet the complexity of treatment and the emotionality of the diagnosis leave families feeling unprepared for many aspects of therapy. This qualitative study aimed to identify desired elements and format of a communication resource to support patients and families facing a diagnosis of ALL. Semi-structured interviews of 12 parents of children receiving ALL treatment, 10 parents of survivors of ALL, and eight adolescent and young adult (AYA) survivors of ALL were conducted between February and June 2021. The interviews focused on communication experiences throughout treatment and identified domains to be addressed in a resource in development. All participants supported the development of an interactive, electronic health (eHealth) resource to help navigate ALL treatment. They felt a website would be helpful in addressing information gaps and mitigating pervasive feelings of overwhelm. Participants specifically sought: (a) information resources to address feelings of cognitive overload; (b) practical tips to help navigate logistical challenges; (c) clear depictions of treatment choices and trajectories to facilitate decision-making; and (d) additional psychosocial resources and support. Two overarching themes that families felt should be interwoven throughout the eHealth resource were connections with other patients/families and extra support at transitions between phases of treatment. A new diagnosis of ALL and its treatment are extremely overwhelming. Patients and families unanimously supported an eHealth resource to provide additional information and connect them with emotional support, starting at diagnosis and extending throughout treatment.

Impact of Demographic Characteristics on Self-Reported Psychological Distress of Cancer Patients during the COVID-19 Pandemic

Purpose/Objective(s)To investigate how at-risk demographic features correlate with the perceived level of psychological distress in cancer patients actively receiving care during the COVID-19 pandemic.Materials/MethodsPatients treated with radiotherapy at a single academic cancer center were reviewed 3 months before (11/01/2019-03/16/2020) and during (03/17/2020- 2/01/2021) the COVID-19 pandemic. Patients who reported an NCCN distress score (range 0=no distress to 10=extreme distress) as a part of their radiation care were reviewed for inclusion. Variables of interest were extracted from the medical record including age, gender, ethnicity, and Karnofsky Performance Scale (KPS) score. Distress scores were recorded around the time of simulation or treatment start. The relationship between these variables and NCCN distress scores were assessed using univariate and multivariate linear regression.ResultsOf all the patients receiving active treatment during the study interval (n=3,129), a total of 2,012 patients reported distress scores and thus were included. Median pre-pandemic distress was 3 (Interquartile Range 0-5) compared to median score of 2 (IQR 0-4) during the pandemic. There was no change in pre- and during pandemic distress on subgroup analysis by age, gender, ethnicity, or KPS score. The following variables were significantly correlated with increased distress on univariate analysis: older age (beta-age = -0.0163 [95% CI: -0.0262 to -0.0063], female gender (OR = 2.43 [95% CI 1.88 to 3.03], race (“black” race OR = 2.77 [95% CI: 1.68 to 4.57] and “other” race OR 1.96 [95% CI: 1.34-2.83]) and lower KPS score (beta-KPS = -0.403 [95% CI: -0.509 to -0.298]. Multivariate analysis was used to test if these demographic features were correlated with psychological distress among all patients. The overall regression was statistically significant albeit with a small effect size (R2=0.0605, p < .0001). On multivariate analysis, the following variables remained significant: age (beta-age = -0.0145 [95% CI: -0.0266 to -0.00241]), KPS score (beta-KPS = -0.429 [95% CI: -0.561 to -0.297]), and female gender (OR = 1.88 [95% CI: 1.28-2.75]).ConclusionThe ongoing COVID-19 pandemic did not significantly affect patient-reported distress levels at the time of receiving cancer-directed therapy. Older age, female gender, and low KPS score were associated with higher psychological distress in cancer patients receiving radiotherapy. Current analysis reveals vulnerable populations of cancer patients may have higher risk of distress during radiotherapy. These populations would warrant additional surveillance during treatment and may benefit from additional psychosocial support.

The Legacy of Mental Distress Following Physical Illness in Childhood: Findings From the Australian Temperament Project.

Childhood physical illnesses have been associated with heightened risk for mental health problems in adolescence and young adulthood; however, little is known about the natural history of this relationship. Here, we examine the nature of mental health adjustment to illness from diagnosis in childhood into adolescence and young adult life. Data were drawn from a large population-based cohort. Parents reported whether their child had a physical illness at 5-6 and 7-8 years and whether they believed their child was so sick it was thought they might die. Depression and anxiety symptoms were reported by parents (for children 7-10 years) and self-reports (11-28 years). A total of 1,001 (56%) parents reported their child had a physical illness. Of these parents, 143 (8%) believed their child might die. Findings indicated there was some evidence of higher levels of depressive and anxious symptoms across late childhood and into early adolescence for those reporting a physical illness in childhood. A similar pattern was observed for those who were so sick it was thought they might die, although symptoms were elevated to a greater extent. Although physical illness in middle childhood is associated with higher levels of depressive and anxious symptoms, by early adolescence, these differences diminish, indicating a process of adaptation that persists into young adulthood. This suggests a potentially sensitive period of adjustment to illness for some, especially for children who it was feared might die. Additional psychosocial assessment and support may be warranted across the "acute" illness period.

Impact of Marital Status on Prognosis of Patients With Invasive Breast Cancer: A Population-Based Study Using SEER Database.

ObjectiveThis study aimed to investigate the prognostic roles of marital status in patients with invasive breast cancer. Method: We extracted the data of patients with invasive breast cancer who were diagnosed during 2010–2015 and had complete staging and molecular typing from the Surveillance, Epidemiology, and End Results (SEER)-18 database. Kaplan–Meier curve method and Cox regression analysis were performed to investigate the differences in breast cancer–specific survival (BCSS) and overall survival (OS) in the total population and various subgroups with different marital statuses.ResultsAmong the 324,062 patients with breast cancer in this study, 55.0%, 40.0%, and 5.0% were married, unmarried, and unknown, respectively; 51.8%, 32.2%, 10.5%, and 5.5% were patients with Stages I, II, III, and IV breast cancer, respectively. The 5-year BCSS and OS of married patients were 92.6% and 88.1%, respectively, higher than those of unmarried patients (88.3% and 78.1%, P < 0.001). After adjustment for sex, age, T and N stages, histological grade, insurance status, race, year of diagnosis, and molecular subtypes, married status was an independent predictor of better BCSS [hazard ratio (HR) = 0.775, 95% confidence interval (CI) = 0.753–0.797, P < 0.001) and OS (HR = 0.667, 95% CI = 0.653–0.681, P < 0.001). After multivariate analysis of various subgroups of sex, age, stage, histological grade, insurance status, race, and molecular subtype, married status was an independent predictor of better BCSS in all subgroups except for Grade IV, age < 35 years, and uninsured subgroups. Marital status was an independent predictor of better OS in all subgroups except the subgroup with age <35 years.ConclusionsIn conclusion, marital status was an independent prognostic factor for breast cancer. The unmarried patients with breast cancer had a worse prognosis, except for the subgroup with age <35 years. Hence, unmarried patients with breast cancer and age ≥35 years may need additional psychosocial and emotional support to achieve more prolonged survival, besides active treatment of primary disease.

Self-reported well-being of cancer survivor (CS)-caregivers: An analysis of the Behavioral Risk Factor Surveillance System (BRFSS).

e22022 Background: With the advancement in cancer therapies and supportive care, the 5-year survival rate for all cancers combined has surpassed 67%, indicating an increased proportion of CS are going back to their life roles, including providing care to others. Being a caregiver is associated with an increased risk of physical and mental distress, depression, and sleep disturbance. Nevertheless, the well-being of “dual role” CS-caregivers remains unknown. Methods: Data were extracted from the BRFSS survey from 2016, 2018, and 2020. Outcome variables included self-reported poor general health, physical health, mental health, depression, physical inactivity, and inadequate sleep. Weighted multivariable logistic regression models were used to calculate the odds of self-reported well-being comparing CS-caregivers to non-CS caregivers. Results: 20% of CSs were caregivers. Among a total of 18,590 caregivers, 18,124 (weighted N=12,311,109) were non-CSs and 466 (weighted N= 287,807) were CSs. CS-caregivers were significantly more likely to have poorer general and physical health and be physically inactive than non-CS caregivers (Table). Differential impacts on the well-being of CS-caregiver were also observed by the female sex and less than 5 years since cancer diagnosis. Conclusions: One in five CS is a caregiver, translating into 3.4 million CS in the US population. CS-caregivers experience diminished well-being across a variety of measures than non-CS caregivers. These data suggest CS-caregivers may need additional psychosocial support. Future prospective longitudinal studies are needed to investigate the outcomes in this growing and vulnerable population.[Table: see text]

Use of the Stanford Integrative Psychosocial Assessment for Transplant as a Pre-surgical Psychological Evaluation Tool for Bariatric Surgery.

How clinicians perform pre-surgical psychological evaluations (PSPE) for bariatric surgery remains variable across institutions. Bariatric PSPE guidelines state that self-report measures should be incorporated in the PSPE procedure, yet only 50-60% of PSPEs utilize patient self-report measures. Previous studies describing the presurgical psychological evaluation report a range of measures, however a gold standard in PSPE has yet to be agreed upon. Given this gap in how a presurgical psychological evaluation for bariatric patients is defined, incorporating more objective measures into this process may help clinicians identify specific areas in which a patient is struggling and benefit from additional psychosocial support. The present study proposes the use of the SIPAT, a semi-structured interview initially developed to assess organ transplant candidates, as part of this evaluation. A total of 292 adult patients underwent a pre-surgical psychological evaluation for bariatric surgery between November 2017 and February 2020 at a Midwest medical center. Patient average age was 45.2 (11.3) years and 83.3% were female. At time of analysis, 160 patients received bariatric surgery. Logistic regression and analyses of bivariate associations were conducted in R. The SIPAT exhibited good convergent validity via correlations with analogous scales on the PROMIS 43, and it yielded a small effect size predicting patients who ultimately received surgery. Accordingly, this semi-structured interview may be a useful tool to help differentiate patients for surgical candidacy.

Self-harm and suicide during and after opioid agonist treatment among primary care patients in England: a cohort study

The first 4 weeks after initiation and cessation of opioid agonist treatment for opioid dependence are associated with an increased risk of all-cause mortality and overdose. We aimed to investigate whether the rate of self-harm and suicide among people who were prescribed opioid agonist treatment differs during initiation, cessation, and the remainder of time on and off treatment. We did a retrospective cohort study and used health-care records from UK Clinical Practice Research Datalink, linked to mortality and hospital admission data, for adults (age 18-75 years at cohort entry) who were prescribed opioid agonist treatment at least once in primary care in England between Jan 2, 1998, and Nov 30, 2018. We estimated rates and adjusted risk ratios (aRRs) of hospital admissions for self-harm and death by suicide, comparing time during and after treatment, as well as comparing stable periods of time on treatment with treatment initiation, cessation, and the remaining time off treatment. Between Jan 2, 1998, and Nov 30, 2018, 8070 patients (5594 [69·3%] men and 2476 [30·7%] women) received 17 004 episodes of opioid agonist treatment over 40 599 person-years. Patients were mostly of White ethnicity (7006 [86·8%] patients). 807 episodes of self-harm (1·99 per 100 person-years) and 46 suicides (0·11 per 100 person-years) occurred during the study period. The overall age-standardised and sex-standardised mortality ratio for suicide was 7·5 times (95% CI 5·5-10·0) higher in the study cohort than in the general population. Opioid agonist treatment was associated with a reduced risk of self-harm (aRR in periods off treatment 1·50 [95% CI 1·21-1·88]), but was not significantly associated with suicide risk (aRR in periods off treatment 1·21 [0·64-2·28]). Risk of self-harm (aRR 2·60 [95% CI 1·83-3·70]) and suicide (4·68 [1·63-13·42]) were both elevated in the first 4 weeks after stopping opioid agonist treatment compared with stable periods on treatment. Stable periods of opioid agonist treatment are associated with reduced risk of self-harm, emphasising the importance of improving retention of patients in treatment. The first month following cessation of opioid agonist treatment is a period of increased risk of suicide and self-harm, during which additional psychosocial support is required. Medical Research Council.

"It Has Added Another Layer of Stress": COVID-19's Impact in the PICU.

The novel coronavirus disease 2019 (COVID-19) pandemic has dramatically changed health care delivery and impacted health care providers. However, little is known about the impact of the pandemic in PICUs. In this qualitative study, we aimed to assess pediatric critical care providers' perspectives on the impact of the COVID-19 pandemic on the experiences of patients and families in the PICU and on their personal and professional lives. Nineteen pediatric critical care and complex care attending physicians and nurse practitioners from a PICU in a tertiary, freestanding children's hospital in the Midwest completed a semistructured, qualitative interview. Transcripts were analyzed by using thematic analysis. For both PICU providers and patients and families, participants described a negative overall impact of the pandemic, especially relating to increased stress and fear of contracting the disease. Disease precautions such as visitor restrictions and restricting movement were reported to be particularly stressful for families because they limited coping strategies (eg, in-person social support). Providers described changes to the work environment, patient care, and their personal lives. Results elucidate the perceived impacts of COVID-19 and associated hospital precautions on the lives of PICU providers, patients, and families. Providers, patients, and families likely require additional psychosocial support during the pandemic. When possible, policies regarding disease management should maximize safety while minimizing additional stress. Further research is needed to explore patient and family perspectives regarding the impact of COVID-19 and to evaluate the continued impact of COVID-19 over time.