- Research Article
- 10.1016/j.pcl.2025.11.001
Shared Decision-Making for Children with Medical Complexity and Their Caregivers in the Perioperative Time.
- Apr 01, 2026
- Pediatric clinics of North America
- Jody L Lin + 3 more +3
Publications from 2021 to 2026
Showing 10 of 1,620 papers
Shared Decision-Making for Children with Medical Complexity and Their Caregivers in the Perioperative Time.
Experiences of registered nurses and nursing assistants during COVID-19: Work stress, stress appraisal, and workplace resources; A qualitative descriptive study.
The COVID-19 pandemic severely disrupted healthcare systems, placing immense physical, emotional, and organizational strain onfront linenursing staff, including registered nurses and nursing assistants. These professionals faced heightened stress due to increased virus exposure, global personal protective equipment (PPE) shortages, and rapidly changing protocols. This study sought to explore the experiences of registered nurses and nursing assistants working in inpatient care during the COVID-19 pandemic, focusing on workplace stressors and available or recommended resources to mitigate these challenges. Despite extensive documentation of elevated stress and burnout among nurses during COVID-19, little is known about how registered nurses and nursing assistants appraised specific workplace stressors and evaluated the adequacy of available organizational resources during the pandemic. Using a qualitative descriptive design, semi-structured interviews were conducted with 14 registered nurses and six nursing assistants from COVID-19 and non COVIDunits at a large academic medical center. Guided by Lazarus and Folkman's Stress and Coping Model, the analysis identified a range of personal, interpersonal, organizational, and societal stressors. Personal stressors included long work hours, loss of loved ones to COVID-19, and feelings of isolation. Interpersonal stressors involved exposure risk, emotional strain from coworkers' stress, and shifts in bedside roles. Organizational stressors encompassed staffing shortages, changes in protocols, and being called off shifts. Societal stressors included inconsistent public health messaging and concerns about protecting vulnerable family members. Participants emphasized the importance of authentic leadership and nursing-centered delivery of resources in addressing these stressors. Six key resource categories emerged: emotional support, staffing, safety, compensation, communication, and stress management. Findings highlight the critical role of nurse managers, effective communication, and staffing policies in mitigating workplace challenges. While rooted in a U.S. context, these insights may inform strategies to support nursing staff globally in future crises, reinforcing the need for tailored, sustainable approaches tofront linecaregiver well-being.
Read moreFactors Influencing Choice of Laboratory-Developed Tests and US Food and Drug Administration (FDA)-Approved or FDA-Cleared In Vitro Diagnostics for Molecular Analytes.
Clinical laboratory tests in the United States have been subject to dichotomous regulatory oversight, encompassing both laboratory-developed tests (LDTs) and US Food and Drug Administration (FDA)-approved or FDA-cleared in vitro diagnostic products (IVDs). To assess the factors and preferences that are important for the selection of tests by clinical laboratories. A questionnaire was sent to laboratories participating in College of American Pathologists proficiency testing programs for 5 molecular analytes across molecular oncology, infectious disease, and germline genetics. The questionnaire asked about the factors that influenced the decision to implement an LDT or an FDA IVD. For all laboratories providing analyte responses, including those using LDTs and FDA IVDs, the factors most rated as very important were assay coverage of specific variants and/or positions of interest (95.1%; 656 of 690) and assay performance (eg, analytical sensitivity and specificity) (92.8%; 666 of 718). Laboratories using LDTs preferentially rated flexibility to modify the assay and already possessing the testing platform/equipment as very important. Laboratories using FDA IVDs preferentially rated the reputation of the assay manufacturer and support and customer service as very important. This study highlights the primacy of performance for laboratories' selection of assays. The variability of laboratory preferences for LDTs and FDA IVDs illustrates the need for a regulatory approach that minimizes burdens and is flexible, so that laboratories can best adapt to their unique clinical environments. These preferences should be considered to reduce impact on laboratories and on patient care as the FDA and other agencies assess regulatory oversight.
Read moreEconomic Evaluation of GARDE: A Digital Health Platform for Population-Level Hereditary Cancer Risk Assessment.
Over 90% of people with hereditary cancer syndromes in the United States remain unidentified. The Genetic Cancer Risk Detector (GARDE) is an open-source, electronic health record (EHR)-integrated, digital health platform that can facilitate genetic cancer risk assessment and genetic testing. This study evaluates its budget impact on health care institutions. A budget impact analysis was performed from the perspective of a US health care provider system over a 3-year horizon. Data from the BRIDGE randomized controlled trial data from the University of Utah Health (UHealth) were used, where eligible primary care patients were screened for genetic cancer risk via GARDE. Costs of GARDE were categorized across planning, implementation, and operational phases. Revenue projections were based on Centers for Medicare & Medicaid Services reimbursement rates. Scenario analyses varied uptake of interventions, surveillance intervals, reimbursement rates, and implementation scale. Of 1,444 patients identified by GARDE at UHealth and enrolled in the BRIDGE trial, 205 completed genetic testing, with 15 found to carry pathogenic variants. The total 3-year implementation cost was $29,217 US dollars (USD). Revenue from guideline-recommended procedures totaled $86,563 USD, yielding a net positive budget impact of $57,347 USD. Most revenue (76.4%) was generated by surgical risk-reduction procedures. Scenario analyses revealed high sensitivity to cancer risk-reducing surgery uptake and implementation scale. Modeling 100% uptake of risk-reducing surgeries increased revenue to $128,102 USD, while 20-fold scaling of the implementation population increased revenue to $1.7 million USD. Commercial insurance reimbursement assumptions further amplified revenue. GARDE enables scalable hereditary cancer risk assessment within a health care provider system. Even with modest uptake, it yields a positive financial return, and significantly greater revenue is achievable with broader implementation. These findings support adoption of EHR-integrated tools to enhance clinical outcomes in precision cancer prevention and risk management, in an economically viable manner.
Read moreStated Preferences for Systemic Treatments for Prostate Cancer: A Targeted Review of the Discrete-Choice Experiment Literature.
Advances in prostate cancer (PC) therapy have improved survival and expanded systemic treatment options. To support treatment decision-making, it is important to understand tradeoffs patients are willing to make between survival and other factors such as side effects. This targeted literature review evaluated the results of discrete-choice experiment (DCE) studies assessing patients' and healthcare professionals' (HCPs') preferences for systemic therapies for PC. PubMed was searched for PC DCE studies evaluating patient or HCP preferences for systemic treatment published through April 2025. Attribute importance rankings were summarized descriptively and stratified by respondent type and by PC stage corresponding to the treatments assessed. Studies primarily assessing preferences for androgen deprivation therapy, which is used in patients with biochemically recurrent non-metastatic castration-sensitive PC, were categorized as "earlier stage"; those assessing systemic combination therapies for metastatic or castration-resistant PC were categorized as "late stage." Seventeen eligible studies were included (late-stage PC treatments, n = 10 patient studies and n = 3 HCP studies; earlier-stage PC treatments, n = 4 patient studies, with one reporting an HCP subgroup). Overall, patients and HCPs showed the strongest preferences for attributes related to efficacy outcomes (e.g.,extending overall survival, clinical progression). Preferences for avoidance of long-term safety attributes, such cardiovascular side effects, were generally ranked higher in late-stage studies than in earlier-stage studies. Meanwhile, avoidance of short-term tolerability attributes, such as injection-site reaction and sexual function, were prioritized and measured only in earlier-stage studies. Preferences differed between respondent types for late-stage treatments, with HCPs placing greater importance on tolerability attributes (fatigue, central nervous system side effects) and patients prioritizing safety (avoiding falls, cardiovascular side effects). Despite differences in safety and tolerability attribute rankings among respondents across earlier-stage and late-stage PC treatments, efficacy outcomes were most important to patients and HCPs.
Read moreInfluence of social determinants of health on post-acute use and outcome: a scoping review
IntroductionSocial determinants of health (SDoH) account for more than half of the variation in health outcomes. However, their role in post-acute care for neurologic conditions remains poorly understood. Clarifying how SDoH influences post-acute utilization and outcomes is critical for improving equity and informing rehabilitation policy.MethodsWe conducted a scoping review of U.S.-based studies published between 2005 and 2025 examining associations between SDoH and length of stay, functional improvement, community discharge, and 30-day readmission in inpatient rehabilitation facilities and skilled nursing facilities among adults with stroke and traumatic brain injury.ResultsAmong 32 studies, social and community context was the most frequently examined SDoH domain, and functional improvement was the commonly studied outcome. Insurance type, race and ethnicity, and marital status were consistently associated with all outcomes. Medicaid and dual-eligible beneficiaries had shorter hospital stays and smaller functional gains compared with those with commercial insurance. Caregivers support increased community discharge. Lower education and Black or Hispanic race/ethnicity increased readmission risk. Despite consistent associations, SDoH were inconsistently measured.ConclusionIntegrating SDoH into post-acute care assessment may improve equity in discharge planning and recovery.
Read moreCOVID-19 outcomes among individuals with substance use disorders.
Adult embryonal rhabdomyosarcoma (botryoid subtype) of the ureter: A case report
Embryonal rhabdomyosarcoma arising from the ureter is exceedingly rare. We report the case of a 20-year-old female who presented with flank pain and hematuria, initially attributed to ureteral stones. Subsequent evaluation revealed an embryonal rhabdomyosarcoma (botryoid subtype) of the ureter. Following surgical resection and chemotherapy, the patient achieved remission and experienced minor complications including neuropathy and bladder irritation. This case highlights the classification and management of ureteral rhabdomyosarcoma. While the prognosis for ureteral rhabdomyosarcoma appears favorable based on limited literature, long-term surveillance is crucial for monitoring recurrence and managing potential complications.
Read moreInterim safety analysis of a randomized phase II trial comparing pembrolizumab with radiation versus pembrolizumab, olaparib, and radiation in localized high risk prostate cancer.
362 Background: Preclinical data suggest synergy between immune checkpoint blockade, PARP inhibition, and radiation. This randomized trial evaluates the safety of pembrolizumab (pembro) with standard-of-care (SOC) radiation and androgen deprivation therapy (ADT), with or without olaparib, in high-risk localized prostate cancer. Methods: Patients with NCCN-defined high- or very high-risk localized prostate cancer were randomized to Arm 1 (1 yr pembro + olaparib 200 mg BID + SOC RT/ADT) or Arm 2 (1 yr pembro + SOC RT/ADT). SOC included ADT (18–24 mo) and IMRT to 70 Gy/28 fractions to prostate/seminal vesicles and 47.6 Gy/28 fractions to pelvic nodes. Safety was assessed per CTCAE v5.0. The primary endpoint is PSA nadir ≤0.06 ng/mL within six months after RT; planned sample size is 64. Results: Eighteen patients were enrolled; one withdrew before treatment, leaving 17 who received ≥1 cycle of pembro. Median age was 68 (range, 53–84) and PSA 9.0 ng/mL (range, 1.5–118). Twelve (67%) had Gleason 4–5, 13 (72%) had PSMA PET–positive nodes, and 15 (83%) met very high-risk criteria. Median pembro exposure was 11 cycles (range, 2–17). Fatigue and GI upset occurred in all patients. Renal/urinary AEs were slightly more common in Arm 1 (86% vs 60%), nearly all grade 1–2. Grade ≥3 events were more frequent in Arm 1, mainly labs (71%), cardiac (29%), infections (29%), and respiratory (29%) while labs (60%), and vascular disorders (50%) in Arm 2. Immune-related AEs included rash, fatigue, nausea, anorexia, musculoskeletal pain, and dry mouth; serious events were myositis (G2), colitis (G3), optic neuropathy (G4), and pneumonitis (G5). Two withdrew and two deaths occurred (immune pneumonitis, unrelated sepsis/MI). Steroids were required in 24%, with 12% also needing additional immunosuppression. Conclusions: Pembro with RT/ADT was feasible and generally tolerable. Adding olaparib did not increase high-grade toxicity, though low-grade urinary AEs were more frequent. All serious immune-mediated AEs, including one treatment-related death, were linked to pembro. Due to slow accrual, the trial was amended to a single-arm study of pembro + olaparib + RT (NCT05568550). Clinical trial information: NCT05568550 .
Read moreSuccinate dehydrogenase B deficient renal cell carcinoma (RCC): A genomic landscape study.
551 Background: In addition to the association of SDHB genomic alterations (GA) with paraganglioma and pheochromocytoma, SDHB GA are also linked to a rare form of RCC with inactivation or homozygous deletion (complete loss) of the SDHB gene (SDHBdef-RCC) which carries a high risk for metastasis and adverse prognosis. We studied the GA landscape of SDHBdef-RCC and compared it to RCC lacking SDHB GA (SDHBwt-RCC) . Methods: 9,462 cases of clinically advanced RCC underwent hybrid capture based comprehensive genomic profiling (CGP) using the FoundationOneCDx assay to identify all classes GA. Microsatellite instability status (MSI) and tumor mutational burden (TMB) were determined from the sequencing data. PD-L1 expression was determined by IHC using the Dako TPS score (0% = negative; 1-49% = low positive and ≥50% = high positive). All cases had relapsed either loco-regionally or with metastatic disease at the time sequencing. Results: 17 (0.6%) of the sequenced advanced RCC were SDHBdef-RCC) and included 7 (41.2%) with germline short variant (SV) SDHB mutations, 6 (35.5%) with somatic SV SDHB mutations and 4 (23.5%) with homozygous SDHB deletions (complete loss of 8 of 8 exons). Their histologic RCC subtypes included 5 sarcomatoid, 5 high grade NOS, 4 oncocytic, 2 clear cell and 1 collecting duct RCC morphology; 10 RCC were sequenced using the primary kidney tumor and 7 from a metastatic site biopsy for CGP. Patients with SDHBdef-RCC were younger (mean age 45.9 yrs vs 62.5 yrs; p<.0001) and had a similar gender distribution (29.4% - 30.9% female). Biomarkers of checkpoint inhibitor efficacy including MSI-high status (0% - 0.6%), TMB level (mean 3.6 to 3.9 mutations/Mb) and any level of PD-L1 expression (40.0% vs 35.7%) were similar in both groups. Noteworthy GA summaries are shown in attached Table. Conclusions: SDHBdef-RCC is a rare form of clinically advanced RCC with predominantly oncocytic and sarcomatoid non-clear cell histology featuring either inactivating short variant SDHB germline or somatic mutations or homozygous deletion of SDHB gene. When compared with SDHDwt-RCC, SDHBdef-RCC occurs in younger patients, features non-clear cell histology, less frequent GA in tumor suppressor genes ( VHL , PBRM1 , SETD2 , BAP1 ), less frequent GA in cell cycle regulatory genes ( CDKN2A / B , T P53 ) and significant increased GA in NF2 . Further investigation of GA in this rare RCC type for clinical trial design and germline screening strategies is warranted. Limitations of this study include its retrospective nature, potential selection bias, and lack of clinically relevant data. Genomic alteration summaries of sequenced advanced RCC. SDHBmut RCC (N=17) SDHBwt RCC (N=9445) P value VHL 23.5% 43.7% NS PBRM1 0.0% 24.9% .011 SETD2 0.0% 17.0% NS BAP1 0.0% 11.3% NS CDKN2A 11.8% 25.6% NS CDKN2B 11.8% 20.1% NS MTAP 7.7% 15.0% NS TP53 5.9% 21.1% NS NF2 23.5% 6.7% .024
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