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Objectives There is a paucity of research on the impact of cancer treatment on the health-related quality of life (HRQOL) of adolescent and young adult (AYA) patients with cancer. Patient-reported outcomes (PROs) are self-report measures used to assess HRQOL and symptom burden. The extent to which PROs have been included in trials that include common AYA cancer types has not been previously assessed. Methods Therapeutic phase 3 trials among common AYA cancer types (Hodgkin lymphoma, non-Hodgkin lymphoma, acute lymphoblastic leukemia, sarcomas, and germ cell tumors) initiated between 2007 and 2020 were identified on ClinicalTrials.gov . The proportions and characteristics of trials including a PRO endpoint were assessed. For comparison with an older population, the proportion of breast and colorectal therapeutic phase 3 trials including PRO endpoints were assessed. Results Eighty-seven studies met the inclusion criteria. Overall, 20.7% of therapeutic phase 3 AYA trials included a PRO endpoint, and only one trial published PRO data. Germ cell tumors (42.9%) and non-Hodgkin lymphoma (40%) trials had the highest proportions of PRO inclusion. The European Organization for Research and Treatment of Cancer generic, cancer-specific quality of life questionnaire was the most commonly used PRO measure; nevertheless, the measures used varied within and between cancer types. The proportion of trials including a PRO endpoint did not change significantly between 2007 to 2013 and 2014 to 2020 (18.6% vs 22.7%, P=.79). Conclusions Few therapeutic phase 3 AYA cancer trials include PRO endpoints, fewer publish PRO data, and there is no homogeneity in the measures administered. Therapeutic trials represent an underused opportunity to capture PRO data in the AYA population with the goal of improving HRQOL outcomes.

Purpose: Although targeted psychosocial programming for adolescents and young adults (AYAs) with advanced cancer is a well-described priority, how best to engage AYAs in that programming is less clear. We aimed to examine AYA perspectives on facilitators and barriers to utilization of psychosocial programs and preferred mode of delivery. Methods: In this nested cohort study, AYAs participated in semistructured 1:1 interviews on communication needs. The present analysis focused on questions regarding psychosocial program delivery. Data were analyzed using directed content analysis followed by thematic content analysis to further organize and refine identified global themes and organizational themes. Results: We interviewed 32 patients (M(age) = 18, range 14–25, 41% female). Key facilitators to utilization of psychosocial services by AYAs were to (1) align in importance of coping skills, (2) emphasize AYA self-motivation and agency in approach and introduction to services, and (3) offer services to everyone and at multiple timepoints. Key AYA barriers included (1) considering themselves an exception to the rule when discussing the psychosocial needs of AYAs with cancer, (2) the challenge of starting something new, and (3) reluctance to share emotional problems with psychosocial clinicians. Regarding the mode of delivery, some preferred in-person delivery due to opportunities for developing a close relationship and therapeutic rapport-building. Mobile app-based delivery was universally appealing. Conclusion: We provide a potential framework to increase uptake of psychosocial services in the high needs population of AYAs with advanced cancer. Future research will explore implementation strategies for increasing AYA engagement in psychosocial intervention programs.

OBJECTIVE: In Adolescents and Young Adults (AYAs) with cancer, we examined (1) the distribution and type of traumatic events (TEs) experienced prior to baseline assessment and (2) how a resilience intervention, Promoting Resilience in Stress Management (PRISM), impacted changes in patient-reported outcomes (PROs) for AYAs with and without TEs. METHODS: AYAs (12–25 years) within 1–10 weeks of diagnosis of new malignancy or ever diagnosed with advanced cancer were enrolled and randomly assigned to Usual Care (UC) with or without PRISM. To assess TEs, we screened medical records for traditionally-defined Adverse Childhood Experiences (ACEs) and medical traumatic events. Age-validated PROs assessed resilience, benefit-finding, hope, generic health-related quality of life (QoL), cancer-specific QoL, depression, and anxiety at enrollment and 6-months later. We calculated effect sizes (Cohen’s d) for PRISM vs UC effect on PRO-score change at 6-months for 1+ TEs and 0 TE groups. RESULTS: Ninety-two AYAs enrolled and completed baseline surveys (44-UC, 48-PRISM; N=74 at 6-months, 38-UC, 36-PRISM); 60% experienced 1+ TEs. PROs at baseline were similar across groups. PRISM’s effect on score-change was greater (Cohen’s d ≥ 0.5) for the 1+ TE group on domains of benefit-finding and hope; and similar (d < 0.5) on domains of resilience, depression, anxiety, and both generic and cancer-specific QoL. CONCLUSIONS: In AYAs with cancer, TEs occurred at similar rates as the general population. PRISM may be particularly helpful for improving benefit-finding and hope for those who have experienced TEs.

Objective Adolescents and young adults (AYAs) with cancer are at high risk of negative psychosocial outcomes. Promoting Resilience in Stress Management (PRISM), a novel, brief, skill-based intervention, has demonstrated efficacy in improving psychosocial well-being for AYAs. We utilized data from a recent randomized trial of PRISM versus usual care (UC) to categorize and explore group differences in change trajectories of patient reported outcomes (PROs) over time. Methods One hundred English-speaking AYAs (aged 12-25 years old) with cancer were randomized to PRISM versus UC. At enrollment and 6 months later, AYAs completed validated PROs measuring resilience (Connor-Davidson Resilience Scale [CDRISC-10]), hope (Hope Scale), benefit finding (Benefit and Burden Scale for Children), cancer-specific quality of life (Pediatric Quality of Life [PedsQL] Cancer Module), and distress (Kessler-6). Patient response trajectories were categorized as "improved," "consistently well," "consistently at risk," or "deteriorated" using minimal clinically important differences (MCIDs) or established measure cutoffs for all PROs. Positive response trajectories consisted of the first two categories ("improved" and "consistently well"), and negative response trajectories consisted of the latter two categories ("consistently at risk" and "deteriorated"). Results Across all PROs, more patients in the PRISM arm "improved" in psychosocial well-being over time, and fewer PRISM recipients "deteriorated" over time. Across all PROs, a greater proportion of PRISM participants (vs UC) experienced positive response trajectories. Across all PROs, a greater proportion of UC participants experienced negative response trajectories. Conclusions PRISM shows evidence of both a prevention effect and an intervention effect. Thus, PRISM may serve as a viable prevention and early intervention model for psychosocial care.

Context Supporting patients' spiritual needs is central to palliative care. Adolescents and young adults (AYAs) may be developing their spiritual identities; it is unclear how to navigate conversations concerning their spiritual needs. Objectives To 1) describe spiritual narratives among AYAs based on their self-identification as religious, spiritual, both, or neither and 2) identify language to support AYAs' spiritual needs in keeping with their self-identities. Methods In this mixed-methods, prospective, longitudinal cohort study, AYAs (14–25 years old) with newly diagnosed cancer self-reported their "religiousness" and "spirituality." One-on-one, semistructured interviews were conducted at three time points (within 60 days of diagnosis, six to 12 months, and 12–18 months later) and included queries about spirituality, God/prayer, meaning from illness, and evolving self-identity. Post hoc directed content analysis informed a framework for approaching religious/spiritual discussions. Results Seventeen AYAs (mean age 17.1 years, SD = 2.7, 47% male) participated in 44 interviews. Of n = 16 with concurrent survey responses, five (31%) self-identified as both "religious and spiritual," five (31%) as "spiritual, not religious," one (6%) as "religious, not spiritual," and five (31%) as neither. Those who endorsed religiousness tended to cite faith as a source of strength, whereas many who declined this self-identity explicitly questioned their preexisting beliefs. Regardless of self-identified "religiousness" or "spirituality," most participants endorsed quests for meaning, purpose, and/or legacy, and all included constructs of hope in their narratives. Conclusion AYA self-identities evolve during the illness experience. When words such as "religion" and "spirituality" do not fit, explicitly exploring hopes, worries, meaning, and changing life perspectives may be a promising alternative.

We aimed to explore the predictive value of screening for distress alone, hope alone, or a combination of both. In a multi-center prospective study, 37 English-speaking Adolescents and Young Adults (AYAs) with cancer and 40 parents completed validated instruments at diagnosis (“baseline”) and 3–6 months later (“follow-up”). Correlated regression models described associations. Within each instrument, baseline and follow-up scores were associated. However, only a composite hope/distress score predicted all three patient-centered outcomes. Multi-dimensional screens incorporating positive and negative psychosocial constructs may predict patient-centered outcomes better than isolated, single-construct instruments.

Background: The “Promoting Resilience in Stress Management” intervention is a skills-based, early palliative care intervention with demonstrated efficacy in adolescents and young adults with cancer. Aim: Utilizing data from a randomized clinical trial of Promoting Resilience in Stress Management versus Usual Care, we examined whether response to Promoting Resilience in Stress Management differed across key sociodemographic characteristics. Design: Adolescents and young adults with cancer completed patient-reported outcome measures of resilience, hope, benefit-finding, quality of life, and distress at enrollment and 6 months. Participants were stratified by sex, age, race, and neighborhood socioeconomic disadvantage based on home address (Area Deprivation Index scores with 8–10 = most disadvantaged). Differences in the magnitude of effect sizes between stratification subgroups were noted using a conservative cutoff of d > 0.5. Setting/participants: Participants were 12 to 25 years old, English-speaking, and receiving cancer care at Seattle Children’s Hospital. Results: In total, 92 adolescents and young adults (48 Promoting Resilience in Stress Management, 44 Usual Care) completed baseline measures. They were 43% female, 73% 12 to 17 years old, 64% White, and 24% most disadvantaged. Effect sizes stratified by sex, age, and race were in an expected positive direction and of similar magnitude for the majority of outcomes with some exceptions in magnitude of treatment effect. Those who lived in less disadvantaged neighborhoods benefited more from Promoting Resilience in Stress Management, and those living in most disadvantaged neighborhoods benefited less. Conclusion: The “Promoting Resilience in Stress Management” intervention demonstrated a positive effect for the majority of outcomes regardless of sex, age, and race. It may not be as helpful for adolescents and young adults living in disadvantaged neighborhoods. Future studies must confirm its generalizability and integrate opportunities for improvement by targeting individual needs.

The aim of this analysis was to explore intra-family longitudinal relationships in psychosocial well-being among Adolescent and Young Adults (AYAs, Mage=17, SD=2.1) with cancer and their mothers using data from a multi-site, prospective, survey-based study. AYA-mother dyads (n=14 dyads) completed validated Patient Reported Outcomes (PROs) measures of self-perceived resilience [Connor-Davidson Resilience Scale (CD-RISC-10)] and distress [Kessler-6 psychological distress scale (K6)] at baseline (14–60 days following diagnosis) and follow-up (3–6 months later). Higher AYA distress predicted better maternal resilience, whereas higher maternal distress predicted worse AYA resilience. Thus, processes of resilience between AYAs and their mothers may differ.

OBJECTIVE. An emerging trend in youth psychotherapy is measurement-based care (MBC): treatment guided by frequent measurement of client response, with ongoing feedback to the treating clinician. MBC is especially needed for treatment that addresses internalizing and externalizing problems, which are common among treatment-seeking youths. A very brief measure is needed, for frequent administration, generating both youth- and caregiver-reports, meeting psychometric standards, and available at no cost. We developed such a measure to monitor youth response during psychotherapy for internalizing and externalizing problems. METHOD. Across 4 studies, we used ethnically diverse, clinically relevant samples of caregivers and youths aged 7–15 to develop and test the Behavior and Feelings Survey (BFS). In Study 1, candidate items identified by outpatient youths and their caregivers were examined via an MTurk survey, with item response theory methods used to eliminate misfitting items. Studies 2–4 used separate clinical samples of youths and their caregivers to finalize the 12-item BFS (6 internalizing and 6 externalizing items), examine its psychometric properties, and assess its performance in monitoring progress during psychotherapy. RESULTS. The BFS showed robust factor structure, internal consistency, test-retest reliability, convergent and discriminant validity in relation to three well-established symptom measures, and slopes of change indicating efficacy in monitoring treatment progress during therapy. CONCLUSIONS. The BFS is a brief, free, youth- and caregiver-report measure of internalizing and externalizing problems, with psychometric evidence supporting its use for MBC in clinical and research contexts.

Ethnopharmacological relevance Hepatitis C is a major public health problem internationally. Many patients cannot benefit from the current treatment regimen (interferon/ribavirin combinations) due to its side effects or ineffectiveness. Xiao-Chai-Hu-Tang or Sho-sai-ko-to (SST), a compound of seven botanical extracts used for liver diseases traditionally in East Asia, was shown to reduce transaminases and the incidence of hepatocellular carcinoma in hepatitis B patients. We conducted a phase II trial of SST in hepatitis C patients who were not candidates for interferon-based therapy to determine whether this agent is worthy of further study. Materials and Methods Twenty four chronic hepatitis C patients received SST at 2.5 g per os (p.o.) three times daily (t.i.d.) for 12 months. Liver function, hepatitis C virus (HCV) viral load and liver biopsy histology were assessed before and after the intervention. Results Improvement of aspartate aminotransferase (AST) was observed in 16 (67%) of study participants. Improvement of alanine aminotransferase (ALT) was seen in 18 (75%) patients. Viral load response was mixed, with 7 patients showing reductions, 10 increases and 7 indeterminate due to assay limitations. Among the 9 (38%) subjects who showed improvement per Knodell's histology activity index (HAI) scores in paired comparison of pre- and post-treatment liver biopsy (the primary endpoints of the study), 5 (21%) showed an improvement of 2 points or greater, meeting the pre-defined criteria for “response. Conclusions Sho-sai-ko-to (SST or Xiao Chai Hu Tang) may improve liver pathology in selected hepatitis C patients who are not candidates for interferon based treatment. Larger, controlled studies of this botanical formulation may be warranted.

Objective To complement standardized measurement of symptoms, we developed and tested an efficient strategy for identifying (before treatment) and repeatedly assessing (during treatment) the problems identified as most important by caregivers and youths in psychotherapy. Method A total of 178 outpatient-referred youths, 7-13 years of age, and their caregivers separately identified the 3 problems of greatest concern to them at pretreatment and then rated the severity of those problems weekly during treatment. The Top Problems measure thus formed was evaluated for (a) whether it added to the information obtained through empirically derived standardized measures (e.g., the Child Behavior Checklist [CBCL; Achenbach & Rescorla, 2001] and the Youth Self-Report [YSR; Achenbach & Rescorla, 2001]) and (b) whether it met conventional psychometric standards. Results The problems identified were significant and clinically relevant; most matched CBCL/YSR items while adding specificity. The top problems also complemented the information yield of the CBCL/YSR; for example, for 41% of caregivers and 79% of youths, the identified top problems did not correspond to any items of any narrowband scales in the clinical range. Evidence on test-retest reliability, convergent and discriminant validity, sensitivity to change, slope reliability, and the association of Top Problems slopes with standardized measure slopes supported the psychometric strength of the measure. Conclusions The Top Problems measure appears to be a psychometrically sound, client-guided approach that complements empirically derived standardized assessment; the approach can help focus attention and treatment planning on the problems that youths and caregivers consider most important and can generate evidence on trajectories of change in those problems during treatment.

Acute esophageal necrosis, which presents as a black esophagus on endoscopy, is a rare disorder that is poorly described in the medical literature. In this study, we analyze all cases reported to date to define risk factors, clinical presentation, endoscopic features, histologic appearance, treatment, complications, outcome and etiopathogenesis of the disease and to describe a distinct medical syndrome and propose a staging system. We searched Medline and PubMed from January 1965 to February 2006 for English-language articles using the key words “acute esophageal necrosis,” “necrotizing esophagitis,” and “black esophagus.” A total of 88 patients were reported in the literature during the 40 years, 70 men and 16 women with an average age of 67 years. Patients were generally admitted for gastrointestinal bleeding and cardiovascular event/shock. Patients presented with hematemesis and melena in more than 70% of the cases. Upper endoscopy showed black, diffusely necrotic esophageal mucosa predominantly affecting the distal third of the organ. Necrosis was confirmed histologically in most cases. Complications included strictures or stenoses, mediastinitis/abscesses, and perforations. Overall mortality was 31.8%. This study provides a structured approach to identifying risk factors, diagnosis, and pathogenesis of the acute esophageal necrosis. Risk factors include age, male sex, cardiovascular disease, hemodynamic compromise, gastric outlet obstruction, alcohol ingestion, malnutrition, diabetes, renal insufficiency, hypoxemia, hypercoagulable state, and trauma. Mechanism of damage is usually multifactorial secondary to ischemic compromise, acute gastric outlet obstruction, and malnutrition. Overall, acute esophageal necrosis should be viewed as a poor prognostic factor, associated with high mortality from the underlying clinical disease.

Summary Hepatic amyloid deposition in the form of globular inclusions is a rare occurrence. Only 24 such cases have been reported to date. Its clinical and pathological significance are undefined. Unawareness of such a pattern can cause diagnostic confusion. We herein describe a case of globular hepatic amyloid in a patient with a B-cell lymphoma and chronic hepatitis C. The findings in our case support the literature data in that (1) it is often an incidental finding during workup for other coexisting conditions and (2) its morphology is peculiar but can be recognized with ease if one is aware of its existence. Our case also provides new insights into this condition. First, it represents the first nonautopsy case to demonstrate that globular hepatic amyloid is an indication of systemic amyloidosis, thus emphasizing the clinical importance of the recognition of this condition. Second, in our case, there was a coexisting B-cell lymphoma, the constituent cells of which showed immunoglobulin λ light chain restriction, and patient's serum λ light chain was elevated. However, light chain restriction was not demonstrated in the globular inclusions, and there was no evidence of monoclonal gammopathy by serum electrophoresis. Whether immunoglobulin light-chain abnormality played a causal role in this condition is to be determined.

Cirrhosis resulting from hepatitis C virus is presently the most common indication for liver transplantation (OLT) in the United States. A number of U.S. transplant centers require cirrhotics who are using methadone to discontinue it before proceeding with OLT. We sought to examine the outcomes of those patients who had undergone OLT at the Mount Sinai Medical Center. A retrospective chart review of 36 subjects on methadone maintenance treatment (MMT), and off heroin, at the time of OLT was performed. The median daily methadone dose pre-OLT was 50 mg. Post-OLT, there was an increase in methadone dose in 15 subjects, a decrease in four subjects, and no dose change in 17 subjects. Four subjects had documented single episodes of intravenous drug use post-OLT; only one subject had a dose change after the event. Patient and graft survival rates were comparable to the national average. There was no significant difference in post-OLT outcome in patients on MMT when compared with the general population. The few episodes of drug relapse were not related to changes in the methadone dose. Efforts should be made to allow methadone-using cirrhotics better access to OLT without regard to methadone dosage.

A new model of subacute compression of the spinal cord is described. Using an expanding epidural mass, a gradual, progressive, and highly reproducible neurological deficit was induced in rats over a 7-day period, resulting in paraplegia. Studies of spinal cord edema, disruption of the blood-spinal cord barrier, and somatosensory evoked responses, as well as histopathological and microangiograpical studies, revealed a marked similarity to changes produced in other spinal compression models and in humans. The model may serve to answer some fundamental questions regarding the pathophysiology and efficacy of various treatment modalities of spinal cord compression.