Co-management of communication and care in adolescent and young adult oncology.

BACKGROUND: Clinicians have an ethical and practical imperative to engage adolescents and young adults (AYAs) with cancer in communication and care. Many young AYAs have involved parents, but guidelines for co-management of care with AYAs and their parents are lacking. METHODS: We performed 37 semistructured interviews with AYAs aged 12-24 years at diagnosis, recruiting them from two pediatric cancer centers. We performed thematic analysis, aiming to understand how AYAs and their parents navigate their roles in communication and care. RESULTS: We identified six roles that AYAs co-managed with their parents: (1) managing information, (2) managing social and emotional needs, (3) managing health, (4) advocating and empowering, (5) making decisions, and (6) managing logistics. AYAs tended to take more active roles in managing information and more passive roles in managing logistics, managing health, and making decisions. AYAs described how they and their parents had mutual responsibilities to be strong and to protect other's emotions. Additionally, we identified five factors that influenced AYAs' roles in communication and care: (1) AYA agency, (2) clinician encouragement, (3) emotional and physical well-being, (4) personality, preferences, and values, and (5) insights and skills. CONCLUSIONS: AYAs have nuanced preferences for how they are involved in communication and care roles. Clinicians can help families to clarify their preferences and values around these roles in a way that meets each family's unique needs. Future studies should aim to develop tools that support the fulfillment of these engagement goals.

Interdependent functions of communication with adolescents and young adults in oncology.

BACKGROUND: Communication is central to patient-centered care in adolescent and young adult (AYA) cancer. Previously, we developed a functional communication model from perspectives of parents whose children had cancer. No prior studies have established a framework for the breadth of communication functions in AYA oncology. We aimed to identify these communication functions from AYAs' perspectives. METHODS: Semistructured interviews with 37 AYAs with cancer aged 12-24 years at diagnosis from two pediatric centers during treatment or survivorship. We performed thematic analysis, using a functional communication model as an a priori framework, but remaining open to novel themes. RESULTS: We identified eight interdependent functions of communication in AYA oncology that were consistent with those previously identified among parents: building relationships, exchanging information, enabling family self-management, making decisions, managing uncertainty, responding to emotions, providing validation, and supporting hope. AYAs held varying preferences for engagement in different communication functions. While some AYAs preferred very passive or active roles, most AYAs described an interdependent process of communication involving them, their parents, and their clinicians. Parents often served as a conduit and buffer of communication between the AYA and clinician. CONCLUSIONS: Interviews with AYAs provided evidence for eight interdependent communication functions in AYA oncology. Many AYAs described the integral role of parents in communication regardless of their age. Clinicians can use this framework to better understand and fulfill the communication needs of AYA patients. Future work should aim to measure and intervene upon these functions to improve communication experiences for AYAs with cancer.

"Don't be afraid to speak up": Communication advice from parents and clinicians of children with cancer.

BACKGROUND: Parents and clinicians of children with cancer can provide advice to improve communication that reflects lessons learned through experience. We aimed to identify categories of communication advice offered to parents of children with cancer from clinicians and other parents. PROCEDURE: (1) Semi-structured interviews with 80 parents of children with cancer at three sites; (2) single-item, open-ended survey administered following 10 focus groups with 58 pediatric oncology clinicians at two sites. We asked participants for communication advice to parents, and analyzed responses using semantic content analysis. RESULTS: Parents provided five categories of communication advice to other parents. Advocacy involved asking questions, communicating concerns, and speaking up for the child. Support involved pursuing self-care, seeking and accepting help, and identifying supportive communities. Managing information involved taking and organizing notes, remaining open to difficult truths, and avoiding inaccurate information. Partnership involved establishing open lines of communication with clinicians, making the family's values and priorities known, and trusting the clinical team. Engaging and supporting the child involved, understanding and incorporating the child's preferences and values, and creating a loving environment. Clinicians' advice addressed similar categories, although only one clinician described engaging and supporting the child. Furthermore, parental advice expanded beyond interactions with the clinical team, whereas clinician advice focused more on the role of clinicians. CONCLUSIONS: Parents and clinicians of children with cancer provided five categories of communication advice. With these data, clinicians, health care organizations, support groups, and patient advocates could offer experience-informed advice to parents who are seeking information and support.

Development and Validation of an Administrative Claims-based Measure for All-cause 30-day Risk-standardized Readmissions After Discharge From Inpatient Psychiatric Facilities.

OBJECTIVE: The objective of this study was to develop and test a measure that estimates unplanned, 30-day, all-cause risk-standardized readmission rates (RSRRs) after inpatient psychiatric facility (IPF) discharge. PARTICIPANTS: We established a retrospective cohort of adults with a principal diagnosis of psychiatric illness or dementia discharged from IPFs to nonacute care settings, using 2012-2013 Medicare fee-for-service claims data. MEASURES: All-cause unplanned readmissions within 3-30 days post-IPF discharge were assessed by constructing then validating a parsimonious logistic regression model of 56 risk factors (selected via empirical data, systematic literature review, clinical expert opinion) for readmission using bootstrapping. RSRRs were calculated from the ratio of predicted versus expected readmission rates for each IPF using hierarchical regression. Measure reliability and validity were assessed via multiple strategies. RESULTS: The measure development cohort included 716,174 admissions to 1679 IPFs and 149,475 (20.9%) readmissions. Most readmissions (>80%) had principal diagnoses of mood, schizoaffective or substance use disorders, delirium/dementia, infections or drug/substance poisoning. Facility RSRRs ranged from 11.0% to 35.4%. The risk adjustment model showed good calibration and moderate discrimination similar to other readmission risk models (c statistic 0.66). Sensitivity analyses solidified the risk modeling approach. The intraclass correlation coefficient of estimated IPF RSRRs was 0.78, indicating good reliability. The measure identified 8.3% of hospitals as having better and 13.4% as having worse RSRRs than the national readmission rate. CONCLUSIONS: The measure provides an assessment of facility-level quality and insight into risk factors useful for informing preventive interventions. The measure will be included in the Centers for Medicare and Medicaid Services (CMS) Inpatient Psychiatric Quality Reporting program in 2019.

The incidence and fate of endoleaks vary between ruptured and elective endovascular abdominal aortic aneurysm repair.

BACKGROUND: The number of ruptured abdominal aortic aneurysm (r-AAA) patients who are treated by endovascular means is increasing as ruptured endovascular aneurysm repair (r-EVAR) enters the mainstream. However, even today, data on the incidence and behavior of endoleaks after r-EVAR are scarce. This study analyzed whether endoleaks behave differently after EVAR for rupture vs elective AAA repair. METHODS: From 2002 to 2013, there were 2052 patients who underwent EVAR for treatment of rupture (n = 166 [8.1%]) and elective repair (n = 1886 [91.9%]) of infrarenal AAA. Follow-up included computed tomography angiography at 1 month, at 6 months, and yearly thereafter. All type I and type III endoleaks were treated at the time of or shortly after the diagnosis. Persistent type II endoleaks at >6 months after EVAR without a decrease in AAA sac underwent translumbar or transfemoral embolization procedures. Data were prospectively collected in a vascular database. RESULTS: During a mean follow-up of 30 months, patients had a significantly lower incidence of type II endoleaks after r-EVAR compared with elective endovascular aneurysm repair (e-EVAR; n = 15 [9.0%] vs n = 380 [20.2%]; P < .01). Although the incidence of type I endoleaks is similar after r-EVAR (n = 9 [5.4%] and e-EVAR (n = 83 [4.4%]; P = .68), the r-EVAR patients required stent graft explantation more frequently (n = 9 [5.4%] vs n = 20 [1.1%]; P < .01). Whereas the need for secondary intervention was comparable in both r-EVAR (n = 33 [19.9%]) and e-EVAR (n = 439 [23.3%]; P = .37) groups, patients undergoing percutaneous embolization procedures trended toward significance between the two groups (n = 11 [6.6%] vs n = 216 [11.5%]; P = .06) with endoleaks. CONCLUSIONS: Compared with e-EVAR, patients who undergo r-EVAR experience a similar incidence of type I endoleaks and a significantly lower incidence of type II endoleaks. The endoleaks in both e-EVAR and r-EVAR patients can frequently be managed by endovascular means. However, r-EVAR patients with type I and type II endoleaks are at a significantly higher risk for stent graft explantation.

Kailo: a systemic approach to addressing the social determinants of young people's mental health and wellbeing at the local level.

The mental health and wellbeing of children and young people is deteriorating. It is increasingly recognised that mental health is a systemic issue, with a wide range of contributing and interacting factors. However, the vast majority of attention and resources are focused on the identification and treatment of mental health disorders, with relatively scant attention on the social determinants of mental health and wellbeing and investment in preventative approaches. Furthermore, there is little attention on how the social determinants manifest or may be influenced at the local level, impeding the design of contextually nuanced preventative approaches. This paper describes a major research and design initiative called Kailo that aims to support the design and implementation of local and contextually nuanced preventative strategies to improve children's and young people's mental health and wellbeing. The Kailo Framework involves structured engagement with a wide range of local partners and stakeholders - including young people, community partners, practitioners and local system leaders - to better understand local systemic influences and support programmes of youth-centred and evidence-informed co-design, prototyping and testing. It is hypothesised that integrating different sources of knowledge, experience, insight and evidence will result in better embedded, more sustainable and more impactful strategies that address the social determinants of young people's mental health and wellbeing at the local level.

P75 nerve growth factor receptor as a useful marker to distinguish spindle cell melanoma from other spindle cell neoplasms of sun-damaged skin.

P75 nerve growth factor receptor (p75 NGF-R) is a low-affinity receptor expressed on the surface of neural crest-derived cells and in a variety of neural tumors. Strong p75 NGF-R expression has been found in spindle cell melanoma (SCM). We studied spindle cell neoplasms of sun-damaged skin to determine whether this marker can reliably distinguish between SCM and other spindle cell malignancies. We evaluated the staining of p75 NGF-R, S100, and HMB-45 in 11 cases of SCM, 16 cases of spindle cell squamous cell carcinoma (SCSCC), 19 cases of spindle cell atypical fibroxanthoma, 6 cases of cutaneous leiomyosarcoma, and 20 scars. Staining with p75 NGF-R was positive in all 11 of 11 (100%) cases of SCM, whereas S100 stained 10 of 11 (91%) cases, and HMB-45 was negative in all SCMs. In addition, there was superior intensity of the staining for p75 NGF-R in comparison to S100. P75-NGF-R showed focal positivity in 3 of 16 (19%) cases of SCSCC. None of the rest of the cases of SCSCC, and none of the cases of spindle cell atypical fibroxanthoma, cutaneous leiomyosarcoma, and scars expressed p75 NGF-R, S100, or HMB-45. P75 NGF-R is a useful marker to distinguish SCM from other spindle cell neoplasms of sun-damaged skin. This marker exhibits greater sensitivity than S100 in identifying SCM and may be a useful diagnostic and ancillary stain especially in the setting of an S100 negative spindle cell neoplasm.

Imaging mass spectrometry--a new and promising method to differentiate Spitz nevi from Spitzoid malignant melanomas.

BACKGROUND: Differentiating Spitz nevus (SN) from Spitzoid malignant melanoma (SMM) is one the most difficult problems in dermatopathology. SPECIFIC AIM: To identify differences on proteomic level between SN and SMM. METHODS: We performed Imaging Mass Spectrometry analysis on formalin-fixed, paraffin-embedded tissue samples to identify differences on proteomic level between SN and SMM. The diagnosis of SN and SMM was based on histopathologic criteria, clinical features, and follow-up data, which confirmed that none of the lesions diagnosed as SN recurred or metastasized. The melanocytic component (tumor) and tumor microenvironment (dermis) from 114 cases of SN and SMM from the Yale Spitzoid Neoplasm Repository were analyzed. After obtaining mass spectra from each sample, classification models were built using a training set of biopsies from 26 SN and 25 SMM separately for tumor and for dermis. The classification algorithms developed on the training data set were validated on another set of 30 samples from SN and 33 from SMM. RESULTS: We found proteomic differences between the melanocytic components of SN and SMM and identified 5 peptides that were differentially expressed in the 2 groups. From these data, 29 of 30 SN and 26 of 29 SMM were recognized correctly based on tumor analysis in the validation set. This method correctly classified SN with 97% sensitivity and 90% specificity in the validation cohort. CONCLUSIONS: Imaging Mass Spectrometry analysis can reliably differentiate SN from SMM in formalin-fixed, paraffin-embedded tissue based on proteomic differences.

Racial and ethnic disparities in communication study enrollment for young people with cancer: A descriptive analysis of the literature.

OBJECTIVE: We aimed to evaluate the racial and ethnic diversity of study participants in recent pediatric cancer communication literature. METHODS: We systematically searched for communication studies in pediatric oncology published between January 2018 and September 2020, limiting analysis to US studies. We considered race and ethnicity as separate categories in our analysis. Two authors screened studies and abstracted characteristics of race and ethnicity reporting and enrollment. RESULTS: Of 98 articles included in this analysis, many studies failed to report participants' race (21/98) and ethnicity (40/98). Most studies ascertained race and ethnicity by self-report (51/98); 25 studies did not describe how they ascertained race and ethnicity. White participants were overrepresented in studies relative to the US population (median 80% in studies vs 72% in 2020 US census). Racial and ethnic minorities were underrepresented (Black: 7% vs 14%; Asian: 4% vs 7%; Pacific Islander: 0% vs 0.5%; Native American: 0.5% vs 3%; Hispanic 8% vs 19%). CONCLUSION: Communication literature in pediatric oncology underrepresents all racial and ethnic minority populations and is inconsistent in the reporting of race and ethnicity. PRACTICE IMPLICATIONS: Future work should follow best practices to ensure this literature adequately represents the experiences of all families in pediatric oncology.

Bereaved Caregivers Perspectives of Negative Communication Experiences Near the End of Life for Adolescents and Young Adults with Cancer.

Purpose: High-quality communication is a standard of palliative care for adolescents and young adults (AYAs) with cancer. Yet, few studies have characterized the negative communication experiences of AYAs near the end of life (EOL). Methods: We performed a secondary analysis of 27 qualitative interviews with bereaved caregivers of AYAs with cancer who died between 2013 and 2016 at 1 of 3 sites. Interviews focused on barriers to optimal EOL care for AYAs. We used thematic analysis using iterative consensus coding to analyze transcripts. Results: Participants were predominantly white (85%), non-Hispanic (93%), and female (74%). Half of the participants were bereaved parents, and 37% were bereaved partners or spouses. Overall, 23/27 (85%) caregivers described at least one negative communication experience related to one of three themes: (1) Insensitivity to patients' needs, preferences, and values; (2) Insufficient discussions of prognosis and/or EOL; and (3) Loss of support from the clinical team near EOL. Both clinician- and patient-related factors contributed to limited EOL discussions. Lack of care continuity related to both clinician factors and systems of care that required new or changing clinical care teams near the EOL. Conclusions: Caregivers report a desire for clinician sensitivity to their needs and values, information about the future, and longitudinal connections with individual clinicians. Clinicians might improve caregivers' EOL experiences by eliciting patient preferences, engaging in EOL discussions, adapting to the AYA's developmental and emotional needs, and demonstrating a commitment to AYAs and caregivers as they approach the EOL.

Incidence and risk factors for secondary pulmonary infections in patients hospitalized with coronavirus disease 2019 pneumonia.

BACKGROUND: Secondary pulmonary infections (SPI) have not been well described in COVID-19 patients. Our study aims to examine the incidence and risk factors of SPI in hospitalized COVID-19 patients with pneumonia. METHODS: This was a retrospective, single-center study of adult COVID-19 patients with radiographic evidence of pneumonia admitted to a regional tertiary care hospital. SPI was defined as microorganisms identified on the respiratory tract with or without concurrent positive blood culture results for the same microorganism obtained at least 48 h after admission. RESULTS: Thirteen out of 244 (5%) had developed SPI during hospitalization. The median of the nadir lymphocyte count during hospitalization was significantly lower in patients with SPI as compared to those without SPI [0.4 K/uL (IQR 0.3-0.5) versus 0.6 K/uL (IQR 0.3-0.9)]. Patients with lower nadir lymphocyte had an increased risk of developing SPI with odds ratio (OR) of 1.21 (95% CI: 1.00 to 1.47, p = 0.04) per 0.1 K/uL decrement in nadir lymphocyte. The baseline median inflammatory markers of CRP [166.4 mg/L vs. 100.0 mg/L, p = 0.01] and d-dimer (18.5 mg/L vs. 1.4 mg/L, p<0.01), and peak procalcitonin (1.4 ng/mL vs. 0.3 ng/mL, p<0.01) and CRP (273.5 mg/L vs. 153.7 mg/L, p<0.01) during hospitalization were significantly higher in SPI group. CONCLUSIONS: The incidence of SPI in hospitalized COVID-19 patients was 5%. Lower nadir median lymphocyte count during hospitalization was associated with an increased OR of developing SPI. The CRP and d-dimer levels on admission, and peak procalcitonin and CRP levels during hospitalization were higher in patients with SPI.

The Effect of an Enhanced Recovery Program on Elective Right Hemicolectomies for Crohn's Disease vs. Colon Cancer: A Retrospective Cohort Analysis.

BACKGROUND: Enhanced recovery after surgery (ERAS) protocols are widely employed in colorectal surgery, successful in reducing postoperative morbidities and hospital length of stay (LOS). However, ERAS effects on the inflammatory bowel disease population remain unclear. This study examines the postoperative course of both Crohn's disease (CD) and colon cancer (CC) patients after elective right hemicolectomies and compares the effectiveness of ERAS protocol. METHODS: A retrospective analysis was performed on patients with CD and CC undergoing elective right hemicolectomies and ileocecectomies from January 2014 through June 2016 (pre-ERAS) and January 2017 through April 2019 (post-ERAS) from a single tertiary care center. Patient demographics and perioperative variables were examined, including prolonged postoperative ileus (PPOI), hospital LOS, and 30-day readmission. RESULTS: 98 CC patients and 91 CD patients met the inclusion criteria. The pre-ERAS CC and post-ERAS CC cohorts were significantly different: post-ERAS had fewer patients with congestive heart failure and chronic obstructive pulmonary disease and had higher albumin levels. The pre-ERAS CC cohort had significantly longer operative durations and higher rates of concomitant procedures than the post-ERAS CC cohort. Both patients with CC and CD had a reduction in LOS with implementation of ERAS, decreasing by 2.24 days (P = .002) and 1.21 days (P = .038), respectively. There was a reduction in rates of organ space infections with CD (pre .132, post .00, P = .007). There was a trend towards an increased rate of PPOI with CD (Pre .079, Post .226, P = .062). DISCUSSION: The ERAS protocol significantly reduced LOS for both groups, without increasing 30-day readmission rates or other morbidities.

Assessing Burnout Among Advanced Practice Providers (APPs) Compared with APP Trainees.

BACKGROUND: This study explored the prevalence of burnout syndrome among advanced practice providers (APPs = physician assistants (PAs) and advanced practice nurses (APNs)) and physician assistant students in training to become APPs. While previous research has focused on understanding burnout in a myriad of health professions, burnout among APPs and APP trainees has been underexplored. As such, this work serves as a primer for establishing benchmark levels of burnout in these specific healthcare provider/trainee populations. METHODS: This study distributed a modified Maslach Burnout Inventory (MBI) to a sample of 297 APPs and 1200 PA students. Mean differences in burnout scores were compared against a national reference sample of healthcare professionals using one sample t tests and linear regression explored relationships among demographics and burnout dimension scores. RESULTS: APPs (n = 124) and APP trainees (n = 230) who responded to the survey displayed average levels of burnout, though both populations expressed significantly lower personal accomplishment scores than the national reference sample. No significant differences were detected between APNs and practicing PAs (p = 0.761). Increased age was negatively associated with depersonalization scores suggesting that APP trainees and younger APPs are at higher risk of developing severe burnout and may need additional support in their training and early careers. Furthermore, the prevalence of burnout between APPs and APP trainees was found to be comparable, suggesting that burnout from training may persist into practice. CONCLUSIONS: A small proportion of APPs and APP trainees may be at risk of developing severe burnout. Individuals in these "at risk" populations may need additional support during training and perhaps later on in practice.

The ACS National Surgical Quality Improvement Program-Inflammatory Bowel Disease Collaborative: Design, Implementation, and Validation of a Disease-specific Module.

BACKGROUND: Surgery for inflammatory bowel disease (IBD) involves a complex interplay between disease, surgery, and medications, exposing patients to increased risk of postoperative complications. Surgical best practices have been largely based on single-institution results and meta-analyses, with multicenter clinical data lacking. The American College of Surgeons National Surgical Quality Improvement Project (ACS-NSQIP) has revolutionized the way in which large-volume surgical outcomes data have been collected. Our aim was to employ the ACS-NSQIP to collect disease-specific variables relevant to surgical outcomes in IBD. STUDY DESIGN: A collaborative of 13 high-volume IBD surgery centers was convened to collect 5 IBD-specific variables in NSQIP. Variables included biologic and immunomodulator medications usage, ileostomy utilization, ileal pouch anastomotic technique, and colonic dysplasia/neoplasia. A sample of the Surgical Clinical Reviewer collected data was validated by a colorectal surgeon at each institution, and kappa's agreement statistics generated. RESULTS: Over 1 year, data were collected on a total of 956 cases. Overall, 41.4% of patients had taken a biologic agent in the 60 days before surgery. The 2 most commonly performed procedures were laparoscopic ileocolic resections (159 cases) and subtotal colectomies (151 cases). Overall, 56.8% of cases employed an ileostomy, and 134 ileal pouches were constructed, of which 92.4% used stapled technique. A sample of 214 (22.4%) consecutive cases was validated from 8 institutions. All 5 novel variables were shown to be reliably collected, with excellent agreement for 4 variables (kappa ≥ 0.70) and very good agreement for the presence of colonic dysplasia (kappa = 0.68). CONCLUSION: We report the results of the initial year of implementation of the first disease-specific collaborative within NSQIP. The selected variables were demonstrated to be reliably collected, and this collaborative will facilitate high-quality, large case-volume research specific to the IBD patient population.

Development and Validation of an Algorithm to Identify Planned Readmissions From Claims Data.

BACKGROUND: It is desirable not to include planned readmissions in readmission measures because they represent deliberate, scheduled care. OBJECTIVES: To develop an algorithm to identify planned readmissions, describe its performance characteristics, and identify improvements. DESIGN: Consensus-driven algorithm development and chart review validation study at 7 acute-care hospitals in 2 health systems. PATIENTS: For development, all discharges qualifying for the publicly reported hospital-wide readmission measure. For validation, all qualifying same-hospital readmissions that were characterized by the algorithm as planned, and a random sampling of same-hospital readmissions that were characterized as unplanned. MEASUREMENTS: We calculated weighted sensitivity and specificity, and positive and negative predictive values of the algorithm (version 2.1), compared to gold standard chart review. RESULTS: In consultation with 27 experts, we developed an algorithm that characterizes 7.8% of readmissions as planned. For validation we reviewed 634 readmissions. The weighted sensitivity of the algorithm was 45.1% overall, 50.9% in large teaching centers and 40.2% in smaller community hospitals. The weighted specificity was 95.9%, positive predictive value was 51.6%, and negative predictive value was 94.7%. We identified 4 minor changes to improve algorithm performance. The revised algorithm had a weighted sensitivity 49.8% (57.1% at large hospitals), weighted specificity 96.5%, positive predictive value 58.7%, and negative predictive value 94.5%. Positive predictive value was poor for the 2 most common potentially planned procedures: diagnostic cardiac catheterization (25%) and procedures involving cardiac devices (33%). CONCLUSIONS: An administrative claims-based algorithm to identify planned readmissions is feasible and can facilitate public reporting of primarily unplanned readmissions.