Performance of Tumor Surveillance for Children With Cancer Predisposition.

Importance: Pediatric oncology patients are increasingly recognized as having an underlying cancer predisposition syndrome (CPS). Surveillance is often recommended to detect new tumors at their earliest and most curable stages. Data on the effectiveness and outcomes of surveillance for children with CPS are limited. Objective: To evaluate the performance of surveillance across a wide spectrum of CPSs. Design, Setting, and Participants: This cohort study reviewed surveillance outcomes for children and young adults from birth to age 23 years with a clinical and/or molecular CPS diagnosis from January 1, 2009, through September 31, 2021. Patients were monitored using standard surveillance regimens for their corresponding CPS at a specialty pediatric oncology center. Patients with hereditary retinoblastoma and bone marrow failure syndromes were excluded. Data were analyzed between August 1, 2021, and December 6, 2023. Exposure: Cancer predisposition syndrome. Main Outcomes and Measures: Outcomes of surveillance were reviewed to evaluate the incidence, spectrum, and clinical course of newly detected tumors. Surveillance modalities were classified for accuracy and assessed for common strengths and weaknesses. Results: A total of 274 children and young adults (mean age, 8 years [range, birth to 23 years]; 144 female [52.6%]) with 35 different CPSs were included, with a median follow-up of 3 years (range, 1 month to 12 years). During the study period, 35 asymptomatic tumors were detected in 27 patients through surveillance (9.9% of the cohort), while 5 symptomatic tumors were detected in 5 patients (1.8% of the cohort) outside of surveillance, 2 of whom also had tumors detected through surveillance. Ten of the 35 tumors (28.6%) were identified on first surveillance imaging. Malignant solid and brain tumors identified through surveillance were more often localized (20 of 24 [83.3%]) than similar tumors detected before CPS diagnosis (71 of 125 [56.8%]; P < .001). Of the 24 tumors identified through surveillance and surgically resected, 17 (70.8%) had completely negative margins. When analyzed across all imaging modalities, the sensitivity (96.4%), specificity (99.6%), positive predictive value (94.3%), and negative predictive value (99.6%) of surveillance were high, with few false-positive (6 [0.4%]) or false-negative (5 [0.3%]) findings. Conclusions and Relevance: These findings suggest that standardized surveillance enables early detection of new tumors across a wide spectrum of CPSs, allowing for complete surgical resection and successful treatment in the majority of patients.

Genomes for Nurses: Understanding and Overcoming Barriers to Nurses Utilizing Genomics.

Background: Genomic testing is an increasingly important technology within pediatric oncology that aids in cancer diagnosis, provides prognostic information, identifies therapeutic targets, and reveals underlying cancer predisposition. However, nurses lack basic knowledge of genomics and have limited self-assurance in using genomic information in their daily practice. This single-institution project was carried out at an academic pediatric cancer hospital in the United States with the aim to explore the barriers to achieving genomics literacy for pediatric oncology nurses. Method: This project assessed barriers to genomic education and preferences for receiving genomics education among pediatric oncology nurses, nurse practitioners, and physician assistants. An electronic survey with demographic questions and 15 genetics-focused questions was developed. The final survey instrument consisted of nine sections and was pilot-tested prior to administration. Data were analyzed using a ranking strategy, and five focus groups were conducted to capture more-nuanced information. The focus group sessions lasted 40 min to 1 hour and were recorded and transcribed. Results: Over 50% of respondents were uncomfortable with or felt unprepared to answer questions from patients and/or family members about genomics. This unease ranked as the top barrier to using genomic information in clinical practice. Discussion: These results reveal that most nurses require additional education to facilitate an understanding of genomics. This project lays the foundation to guide the development of a pediatric cancer genomics curriculum, which will enable the incorporation of genomics into nursing practice.

Parent Quality of Life After Disclosure of Pediatric Oncology Germline Sequencing Results.

PURPOSE: To characterize parents' quality of life (QoL) after germline genomic sequencing for their children with cancer. METHODS: Participants were n = 104 parents of children with cancer enrolled in a prospective study of clinical tumor and germline genomic sequencing. Parents completed surveys at study consent (T0), before disclosure of their child's germline results (T1), and again ≥5 weeks after results disclosure (T2). Bivariate associations with QoL were examined, followed by a multivariable regression model predicting parents' psychological distress. RESULTS: At T2, parental distress significantly differed by their children's germline result type (positive, uncertain, negative; P = .038), parent relationship status (P = .04), predisclosure genetics knowledge (P = .006), and predisclosure worry about sequencing (P < .001). Specifically, parents of children with positive (ie, pathogenic or likely pathogenic) results experienced greater distress than those of children with negative results (P = .029), as did parents who were single, more knowledgeable about genetics, and with greater worry. In the adjusted regression model, a positive germline result remained significantly associated with parents' lower QoL at T2 follow-up (F [4,92] = 9.95; P < .001; R2 = .30; ß = .19; P = .031). CONCLUSION: Germline genomic sequencing for children with cancer is associated with distress among parents when revealing an underlying cancer predisposition among their affected children. Genetic education and counseling before and after germline sequencing may help attenuate this impact on QoL by addressing parents' concerns about test results and their health implications. Assessing parents' worry early in the testing process may also aid in identifying those most likely in need of psychosocial support.

Pathogenic Variants in Adult-Onset Cancer Predisposition Genes in Pediatric Cancer: Prevalence and Impact on Tumor Molecular Features and Clinical Management.

PURPOSE: Clinical genomic sequencing of pediatric tumors is increasingly uncovering pathogenic variants in adult-onset cancer predisposition genes (aoCPG). Nevertheless, it remains poorly understood how often aoCPG variants are of germline origin and whether they influence tumor molecular profiles and/or clinical care. In this study, we examined the prevalence, spectrum, and impacts of aoCPG variants on tumor genomic features and patient management at our institution. EXPERIMENTAL DESIGN: This is a retrospective study of 1,018 children with cancer who underwent clinical genomic sequencing of their tumors. Tumor genomic data were queried for pathogenic variants affecting 24 preselected aoCPGs. Available tumor whole-genome sequencing (WGS) data were evaluated for second hit mutations, loss of heterozygosity (LOH), DNA mutational signatures, and homologous recombination deficiency (HRD). Patients whose tumors harbored one or more pathogenic aoCPG variants underwent subsequent germline testing based on hereditary cancer evaluation and family or provider preference. RESULTS: Thirty-three patients (3%) had tumors harboring pathogenic variants affecting one or more aoCPGs. Among 21 tumors with sufficient WGS sequencing data, six (29%) harbored a second hit or LOH affecting the remaining aoCPG allele with four of these six tumors (67%) also exhibiting a DNA mutational signature consistent with the altered aoCPG. Two additional tumors demonstrated HRD, of uncertain relation to the identified aoCPG variant. Twenty-one of 26 patients (81%) completing germline testing were positive for the aoCPG variant in the germline. All germline-positive patients were counseled regarding future cancer risks, surveillance, and risk-reducing measures. No patients had immediate cancer therapy changed due to aoCPG data. CONCLUSIONS: AoCPG variants are rare in pediatric tumors; however, many originate in the germline. Almost one third of tumor aoCPG variants examined exhibited a second hit and/or conferred an abnormal DNA mutational profile suggesting a role in tumor formation. aoCPG information aids in cancer risk prediction but is not commonly used to alter the treatment of pediatric cancers.

Improvements in physical activity and some dietary behaviors in a community health worker-led diabetes self-management intervention for adults with low incomes: results from a randomized controlled trial.

People with low incomes have a disproportionate prevalence of diabetes and its complications and experience many barriers to self-management, which community health workers (CHWs) may help address. We sought to examine the effects of an in-home CHW-led intervention for adults with diabetes and incomes <250% of the federal poverty line on self-management behaviors and test mediators and moderators. From 2010 to 2013, we randomized participants from three Washington State health systems with type 2 diabetes and hemoglobin A1c (HbA1c) ≥ 8% to the CHW intervention (N = 145) or usual care control (N = 142) arms. We examined effects on 12-month self-management: physical activity, dietary behaviors, medication taking, blood glucose monitoring, foot care, and tobacco use. For behaviors with significant intervention-control group differences, we tested mediation by self-efficacy and social support. We also investigated whether intervention-associated changes in behaviors varied by race/ethnicity, gender, and baseline values of HbA1c, diabetes distress, depression, and food insecurity (moderators). Compared to controls, intervention participants engaged in more physical activity and reported better dietary behaviors for some measures (general diet, frequency of skipping meals, and frequency of eating out) at 12-months, but there was no evidence of mediation by self-efficacy or social support. Evidence of moderation was limited: improvements in the frequency of skipping meals were restricted to participants with baseline HbA1c < 10%. Study findings suggest CHWs could be integrated into diabetes care to effectively support lifestyle changes around physical activity and some eating behaviors among adults with low incomes. More research is needed to understand mechanisms of change.

Genomes for Kids: The Scope of Pathogenic Mutations in Pediatric Cancer Revealed by Comprehensive DNA and RNA Sequencing.

Genomic studies of pediatric cancer have primarily focused on specific tumor types or high-risk disease. Here, we used a three-platform sequencing approach, including whole-genome sequencing (WGS), whole-exome sequencing (WES), and RNA sequencing (RNA-seq), to examine tumor and germline genomes from 309 prospectively identified children with newly diagnosed (85%) or relapsed/refractory (15%) cancers, unselected for tumor type. Eighty-six percent of patients harbored diagnostic (53%), prognostic (57%), therapeutically relevant (25%), and/or cancer-predisposing (18%) variants. Inclusion of WGS enabled detection of activating gene fusions and enhancer hijacks (36% and 8% of tumors, respectively), small intragenic deletions (15% of tumors), and mutational signatures revealing of pathogenic variant effects. Evaluation of paired tumor-normal data revealed relevance to tumor development for 55% of pathogenic germline variants. This study demonstrates the power of a three-platform approach that incorporates WGS to interrogate and interpret the full range of genomic variants across newly diagnosed as well as relapsed/refractory pediatric cancers. SIGNIFICANCE: Pediatric cancers are driven by diverse genomic lesions, and sequencing has proven useful in evaluating high-risk and relapsed/refractory cases. We show that combined WGS, WES, and RNA-seq of tumor and paired normal tissues enables identification and characterization of genetic drivers across the full spectrum of pediatric cancers. This article is highlighted in the In This Issue feature, p. 2945.

Proton Therapy for Breast Cancer: A Consensus Statement From the Particle Therapy Cooperative Group Breast Cancer Subcommittee.

Radiation therapy plays an important role in the multidisciplinary management of breast cancer. Recent years have seen improvements in breast cancer survival and a greater appreciation of potential long-term morbidity associated with the dose and volume of irradiated organs. Proton therapy reduces the dose to nontarget structures while optimizing target coverage. However, there remain additional financial costs associated with proton therapy, despite reductions over time, and studies have yet to demonstrate that protons improve upon the treatment outcomes achieved with photon radiation therapy. There remains considerable heterogeneity in proton patient selection and techniques, and the rapid technological advances in the field have the potential to affect evidence evaluation, given the long latency period for breast cancer radiation therapy recurrence and late effects. In this consensus statement, we assess the data available to the radiation oncology community of proton therapy for breast cancer, provide expert consensus recommendations on indications and technique, and highlight ongoing trials' cost-effectiveness analyses and key areas for future research.

Factors Associated with Declining to Participate in a Pediatric Oncology Next Generation Sequencing Study.

PURPOSE: For the advances of pediatric oncology next generation sequencing (NGS) research to equitably benefit all children, a diverse and representative sample of participants is needed. However, little is known about demographic and clinical characteristics that differentiate families who decline enrollment in pediatric oncology NGS research. METHODS: Demographic and clinical data were retrospectively extracted for 363 pediatric oncology patients (0-21 years) approached for enrollment on Genomes for Kids (G4K), a study examining the feasibility of comprehensive clinical genomic analysis of tumors and paired normal samples. Demographic and clinical factors that significantly differentiated which families declined were subsequently compared to enrollment in Clinical Implementation of Pharmacogenetics (PG4KDS) for 348 families, a pharmacogenomics study with more explicit therapeutic benefit examining genes affecting drug responses and metabolism. RESULTS: Fifty-three (14.6%) families declined enrollment in G4K. Race/ethnicity was the only variable that significantly differentiated study refusal using multivariate logistic regression, with families of black children more likely to decline enrollment compared to families of non-Hispanic or Hispanic white children. Reasons for declining G4K were generally consistent with other pediatric genomics research, with feeling overwhelmed and insurance discrimination fears most frequently cited. Families of black children were also more likely to decline enrollment in PG4KDS. Thirteen (3.7%) of the 348 families approached for both studies declined PG4KDS. CONCLUSION: Race/ethnicity differentiated study declination across two different pediatric oncology genomics studies, suggesting enrollment disparities in the context of pediatric oncology genomics research. Genomics research participant samples that do not fully represent racial and ethnic minorities risk further exacerbating health disparities. Additional work is needed to understand the nuances of parental decision making in genomic research and facilitate enrollment of diverse patient populations.

Enrichment of heterozygous germline RECQL4 loss-of-function variants in pediatric osteosarcoma.

Patients harboring germline pathogenic biallelic variants in genes involved in the recognition and repair of DNA damage are known to have a substantially increased cancer risk. Emerging evidence suggests that individuals harboring heterozygous variants in these same genes may also be at heightened, albeit lesser, risk for cancer. Herein, we sought to determine whether heterozygous variants in RECQL4, the gene encoding an essential DNA helicase that is defective in children with the autosomal recessive cancer-predisposing condition Rothmund-Thomson syndrome (RTS), are associated with increased risk for childhood cancer. To address this question, we interrogated germline sequence data from 4435 pediatric cancer patients at St. Jude Children's Research Hospital and 1127 from the National Cancer Institute Therapeutically Applicable Research to Generate Effective Treatment (TARGET) database and identified 24 (0.43%) who harbored loss-of-function (LOF) RECQL4 variants, including five of 249 (2.0%) with osteosarcoma (OS). These RECQL4 variants were significantly overrepresented in children with OS, the cancer most frequently observed in patients with RTS, as compared to 134,187 noncancer controls in the Genome Aggregation Database (gnomAD v2.1; P = 0.00087, odds ratio [OR] = 7.1, 95% CI, 2.9-17). Nine of the 24 (38%) individuals possessed the same c.1573delT (p.Cys525Alafs) variant located in the highly conserved DNA helicase domain, suggesting that disruption of this domain is central to oncogenesis. Altogether these data expand our understanding of the genetic factors predisposing to childhood cancer and reveal a novel association between heterozygous RECQL4 LOF variants and development of pediatric OS.

Family Perceptions of Quality of End-of-Life Care for Veterans with Advanced CKD.

BACKGROUND AND OBJECTIVES: Little is known about the quality of end-of-life care for patients with advanced CKD. We describe the relationship between patterns of end-of-life care and dialysis treatment with family-reported quality of end-of-life care in this population. DESIGN, SETTING, PARTICIPANTS, & MEASUREMENTS: We designed a retrospective observational study among a national cohort of 9993 veterans with advanced CKD who died in Department of Veterans Affairs facilities between 2009 and 2015. We used logistic regression to evaluate associations between patterns of end-of-life care and receipt of dialysis (no dialysis, acute dialysis, maintenance dialysis) with family-reported quality of end-of-life care. RESULTS: Overall, 52% of cohort members spent ≥2 weeks in the hospital in the last 90 days of life, 34% received an intensive procedure, and 47% were admitted to the intensive care unit, in the last 30 days, 31% died in the intensive care unit, 38% received a palliative care consultation in the last 90 days, and 36% were receiving hospice services at the time of death. Most (55%) did not receive dialysis, 12% received acute dialysis, and 34% received maintenance dialysis. Patients treated with acute or maintenance dialysis had more intensive patterns of end-of-life care than those not treated with dialysis. After adjustment for patient and facility characteristics, receipt of maintenance (but not acute) dialysis and more intensive patterns of end-of-life care were associated with lower overall family ratings of end-of-life care, whereas receipt of palliative care and hospice services were associated with higher overall ratings. The association between maintenance dialysis and overall quality of care was attenuated after additional adjustment for end-of-life treatment patterns. CONCLUSIONS: Among patients with advanced CKD, care focused on life extension rather than comfort was associated with lower family ratings of end-of-life care regardless of whether patients had received dialysis.

Veteran peer Coaches Optimizing and Advancing Cardiac Health (Vet-COACH); design and rationale for a randomized controlled trial of peer support among Veterans with poorly controlled hypertension and other CVD risks.

BACKGROUND: Peer support can improve health for patients with chronic conditions; however, evidence for disease prevention is less clear and peer recruitment strategies are not well described. This paper describes a study protocol to evaluate a peer support intervention to improve hypertension control and reduce cardiovascular disease (CVD) risk. METHODS & RESEARCH DESIGN: Target enrollment for this two-site study is n = 400. Eligibility criteria include Veterans enrolled in Veterans Health Administration (VHA) primary care with poorly controlled hypertension and one other cardiovascular disease risk (smoking, overweight/obesity, or hyperlipidemia) who live in census tracts with high rates of hypertension. Enrolled participants are randomized to a home-based peer delivered self-management intervention (5 home visits and 5 phone calls with a peer health coach) versus usual care. The primary outcome is a change in systolic blood pressure (SBP) and secondary outcomes include change in CVD risk and health care use. RESULTS: Trial results are pending and participant enrollment is ongoing. We recruited peer coaches from Veterans who lived in census tracks with the highest rates of hypertension. To recruit Veteran peer coaches, we asked primary care providers (n = 41) and team nurses (n = 35) to nominate patients who they thought would be a good fit for the peer coach position (based on successful self-management and health care navigation) (n = 73 nominated from 964 patients). We interviewed 12 Veterans and trained 5 peer coaches. CONCLUSIONS: Results of this trial will inform peer support programs targeted to provide community-based delivery of prevention services to patients in high-risk areas. TRIAL REGISTRATION: Clinicaltrial.gov identifier NCT02697422 TRIAL STATUS: Enrollment for the randomized trial phase began in September 2017 and will be complete September 2019.

Predictors of Antiestrogen Recommendation in Women With Estrogen Receptor-Positive Ductal Carcinoma In Situ.

BACKGROUND: Antiestrogen (anti-e) use in estrogen receptor-positive (ER+) ductal carcinoma in situ (DCIS) has been shown to reduce the incidence of noninvasive and invasive breast cancer. Few studies have evaluated factors associated with anti-e recommendation in ER+ DCIS. METHODS: The California Cancer Registry was queried for female patients diagnosed with ER+ DCIS and treated with lumpectomy or unilateral mastectomy from 2004 to 2011. Patient demographics, comorbidities, and clinical characteristics were analyzed for association with anti-e recommendation. RESULTS: Of 5,527 patients identified, 76.4% patients underwent lumpectomy and 23.6% underwent unilateral mastectomy. Of the total cohort, 31.6% patients were recommended anti-e therapy, 60.4% were not, and the remaining 8.0% were recommended anti-e, but administration was not documented. Performance of lumpectomy predicted anti-e use compared with mastectomy (odds ratio [OR], 2.08; 95% CI, 1.77-2.43). Asian/Pacific Islanders were more often recommended anti-e therapy when compared with whites (OR, 1.28; 95% CI, 1.10-1.49). Patients younger than 70 years were more often recommended anti-e (age, 18-49 years: OR, 1.38; CI, 1.12-1.71; and age, 50-69 years: OR, 1.43; CI, 1.20-1.71). CONCLUSIONS: Despite current guidelines to consider the use of anti-e therapy, recommendation of anti-e after surgical treatment of DCIS is low, having been recommended to 40% of patients, and used by fewer than one-third. Significant predictors include lumpectomy compared with unilateral mastectomy, Asian/Pacific Islander race, younger age, and number of comorbidities. Further work is merited to understand patterns of anti-e therapy recommendation by providers in patients with DCIS.

Teledermatology in the diagnosis of melanoma.

We conducted a retrospective chart review of US Veterans in the Pacific Northwest area to compute melanoma incidence and Breslow depth at diagnosis. We compared Veterans with access to teledermatology (TD) and those without (non-TD). We identified pathology-confirmed primary melanomas in Veterans who had had at least one encounter at a VA facility during a 3-year study period. The age-adjusted melanoma incidence for all, TD and non-TD Veterans was 36, 15 and 57 per 100,000, respectively. The mean Breslow depth was significantly greater in the TD group (P = 0.03). Although a higher proportion of thin (Breslow depth ≤1 mm) TD melanomas were mitotically active, this difference was not significant. We also found that 180 (40%) of the non-TD (face-to-face) diagnosed melanomas were from Veterans living in areas where TD was available. This suggests that the higher melanoma incidence in the non-TD group was mainly due to under-utilization of TD services. The study demonstrated that the TD service was not fully utilized in the VISN20 region, although the reasons for this are not clear. Where TD was utilized it tended to diagnose more advanced melanomas with worse initial prognosis.

Neighborhood environment and health status and mortality among veterans.

BACKGROUND: The VHA is the largest integrated US health system and is increasingly moving care into the communities where veterans reside. Veterans who utilize the VA for their care have worse health status than the general population. However, there is limited evidence about the association of neighborhood environment and health outcomes among veterans. OBJECTIVES: The primary aim of this study is to assess the relative contribution of neighborhood environment, health system, and individual characteristics to health status and mortality of veterans. METHODS: Information on personal socio-economic indicators, existing medical conditions and health status were obtained from baseline data from a multi-site, randomized trial of primary care patients (n = 15,889). The physical component scale (PCS) and mental component scale (MCS) summarized health status. Census tracts were used as proxies for neighborhoods. A summary score based on census tract data characterized the neighborhood socio-economic environment and walkability. Data were analyzed with multilevel hierarchical models. Analyses of health status were cross-sectional. Mortality analyses were longitudinal as participants were followed for an average of 722.5 days to ascertain vital status. RESULTS: Neighborhood SES was associated with PCS and MCS scores, controlling for individual socio-economic status, self-reported co-morbid disease, smoking status, and health care access. In the lowest versus highest quartiles of neighborhood SES, adjusted PCS scores were 34.4 vs. 35.4 (p < 0.05) and adjusted MCS scores were 46.2 versus 47.0 (p < 0.05). PCS score was also significantly associated with neighborhood walkability (p < 0.05). Mortality was lower for veterans living in neighborhoods with the highest decile neighborhood SES (HR 0.78, highest vs. lowest decile 95% CI 0.63, 0.97). CONCLUSIONS: Veterans living in lower SES neighborhoods have poorer health status and a higher risk of mortality, independent of individual characteristics and health care access. Neighborhood walkability was associated with higher PCS scores.

Risk of selected subsequent carcinomas in survivors of childhood cancer: a report from the Childhood Cancer Survivor Study.

PURPOSE: To determine the risk of subsequent carcinomas other than breast, thyroid, and skin, and to identify factors that influence the risk among survivors of childhood cancer. PATIENTS AND METHODS: Subsequent malignant neoplasm history was determined in 13,136 participants (surviving > or = 5 years postmalignancy, diagnosed from 1970 to 1986 at age < 21 years) of the Childhood Cancer Survivor Study to calculate standardized incidence ratios (SIRs), using Surveillance, Epidemiology, and End Results data. RESULTS: In 71 individuals, 71 carcinomas were diagnosed at a median age of 27 years and a median elapsed time of 15 years in the genitourinary system (35%), head and neck area (32%), gastrointestinal tract (23%), and other sites (10%). Fifty-nine patients (83%) had received radiotherapy, and 42 (59%) developed a second malignant neoplasm in a previous radiotherapy field. Risk was significantly elevated following all childhood diagnoses except CNS neoplasms, and was highest following neuroblastoma (SIR = 24.2) and soft tissue sarcoma (SIR = 6.2). Survivors of neuroblastoma had a 329-fold increased risk of renal cell carcinomas; survivors of Hodgkin's lymphoma had a 4.5-fold increased risk of gastrointestinal carcinomas. Significantly elevated risk of head and neck carcinoma occurred in survivors of soft tissue sarcoma (SIR = 22.6), neuroblastoma (SIR = 20.9), and leukemia (SIR = 20.9). CONCLUSION: Young survivors of childhood cancers are at increased risk of developing subsequent carcinomas typical of later adulthood, underscoring the importance of long-term follow-up and risk-based screening. Follow-up of the cohort is ongoing to determine lifetime risk and delineate individual characteristics that contribute to risk.

Patient perspectives of patient-provider communication after adverse events.

OBJECTIVE: To explore patient perceptions of patient-provider communication after an actual adverse medical event because prior patient error studies are rarely based on real situations. DESIGN: We conducted four patient focus groups using a semi-structured guide. We analyzed transcripts using an editing approach to identify themes. SETTING: Three sites in Colorado. STUDY PARTICIPANTS: participants were recruited from statewide post-injury program. Purposeful sampling began with patients in a geographic location; we contacted every other patient (up to 50). Twenty-two patients initially agreed to participate; 16 adults participated, representing 13 cases. RESULTS: Complex issues and processes were involved in resolution attempts. Effective communication was an important factor in whether professional relationships continued after an adverse event. The communication nature and quality influenced whether patients defined event as 'honest mistake' or 'error'. Two types of trauma (physical and emotional) were expected and found. A third (financial) uncovered and proved in some cases the most salient factor influencing patients' subsequent actions. Caring, honest, quick, personal, and repeated provider responses were linked to patient satisfaction. CONCLUSIONS: Provider communication timeliness and quality were important influences on patients' responses to adverse events. Confronting an adverse medical event collaboratively helped both patients and providers with patients' emotional, physical, and financial trauma and minimized the anger and frustration commonly experienced. Health organizations, providers, investigators, and policymakers should consider the patient experience when developing provider training or evaluating processes in patient resolution.

Characteristics of childhood cancer survivors predicted their successful tracing.

OBJECTIVE: The Childhood Cancer Survivor Study is a retrospective cohort study that was initiated to explore late effects of childhood cancer and its therapies. We evaluated the characteristics of those requiring tracing and factors that influenced tracing success. STUDY DESIGN AND SETTING: Medical record review identified 20,051 eligible individuals from 25 institutions in the United States and Canada. Of these, 13,021 had a current address in the medical record at the treating institution, and 7,030 had an incorrect address and required tracing by a commercial firm. RESULTS: Tracing was successful for 4,188 persons (60%). Younger age at contact, shorter length of time since last contact, having a middle initial available, an uncommon last name, and socioeconomic factors were found to predict successful tracing. Compared to those with a current address available in medical records, subjects successfully traced were less likely to have accessed health care during the previous 2 years; and more likely to be current smokers, obese, and to report moderate to severe impairments (pain, functional status, and activity). CONCLUSION: These findings provide an empirical basis concerning determinants and predictors of tracing success. If tracing had not been performed in this cohort, spurious associations may have been obtained for some health outcomes of interest.