An ICU Expansion of a Novel Chaplain Intervention, "This is My Story," to Support Interdisciplinary Medical Teams Delivering Care to Non-Communicative Patients in an Academic Medical Center.

The intervention "This is My Story" (TIMS) was previously developed and presented as a case study involving chaplains and support to non-communicative patients (Tracey et al in J Religion Health, 60(5):3282-3290, 2021). This further investigation aims to determine feasibility by looking at eight criteria: acceptability, demand, implementation, practicality, adaptation, integration, expansion, and limited-efficacy testing (Bowen et al in Am J Prev Med 36(5):452-457, 2009). Chaplains conducted recorded conversation with a patient's loved one, then it was edited for brevity and succinctness, and uploaded to the patient's medical chart and can be listened to at any time by medical providers. A completed interview, posted to the patient's electronic medical record (EMR), and able to be listened to by the medical team, was found to be contingent upon two factors: proximity to time between referral to call completion and amount of clinical experience of the chaplain.

TIMS: A Mixed Methods Evaluation of the Impact of a Novel Chaplain Facilitated Recorded Interview Placed in the Medical Chart for the Medical Staff in an ICU During the COVID-19 Pandemic.

The purpose of this study is to examine how a novel intervention known as TIMS, "This is My Story," impacted clinicians caring for patients during the COVID-19 pandemic in the medical intensive care unit (MICU) at the Johns Hopkins Hospital. An eight-question survey was administered to MICU staff on their experience with TIMS files for pre- and post-listening reflections. Qualitative interviews were conducted with 17 staff members who prospectively agreed to participate. A total of 97 pre-listening and 88 post-listening questionnaires were completed. Responses indicated that the audio recording was appropriate to discover more about the patient beyond the immediately observable and useful (98%), "considerably" increased staff empathy for the patient (74%), and thought it would "some" or "considerably" improve subsequent interactions with the patient's loved ones (99%). The qualitative analysis revealed that medical staff found the audio format easy to use and helpful in humanizing patients in their clinical practice. The study demonstrates that TIMS audio files are an important addition to the electronic medical record, enabling clinicians to practice with greater awareness of the patient's context and increased empathy for patients and families.

Regional and rural allied health professionals in Australia need better information services training and support for evidence-based practice.

BACKGROUND: Evidence-based practice requires health professionals to recognise situations of uncertainty in their practice, translate that uncertainty into answerable questions, and find and appraise information relevant to those questions. No research to date has explored the research-based information needs of allied health professionals (AHPs) in regional and rural Australia. OBJECTIVE: To examine the information-seeking experiences and needs of AHPs in regional and rural Australia. METHODS: A total of 80 AHPs, predominantly occupational therapists and physiotherapists, practising in regional and rural areas of Australia completed an online survey. RESULTS: Almost all respondents reported having questions requiring research evidence, but most of their questions were worded non-specifically. Respondents practising in rural areas had greater perceived difficulty in obtaining relevant evidence than their regional counterparts. Many respondents reported wanting additional support to find relevant research evidence. DISCUSSION: The findings offer insights regarding information-seeking challenges AHPs face and potential solutions, including improved training and increased health librarian support. However, due to sampling limitations, the results cannot be generalised to all allied health professions. CONCLUSION: Allied health professionals may require more training and support to engage in efficient and effective information-seeking behaviours. Health librarians have a valuable role to play in providing this training and support.

An Introduction to a Novel Intervention, "This is My Story", to Support Interdisciplinary Medical Teams Delivering Care to Non-Communicative Patients.

This set of three case studies portrays a unique intervention undertaken at The Johns Hopkins Hospital in response to the COVID-19 pandemic with a goal to reduce the impact of absentee visitors during patient care on physicians, nurses, and the patient's loved ones. The intervention, known by the acronym TIMS, "This is My Story", involves a chaplain-initiated telephone call to a loved one, someone who has been identified by the patient as part of their care discussions, of hospitalized patients who have difficulty with communicating to the medical team. The call is recorded then edited for conciseness, and attached to the electronic health record for the entire medical care team to hear. The focus of the chaplain lead conversation with a loved one centers around gathering and presenting information about the patient as a person. Medical team members listen to the edited audio file either on rounds or by utilizing a hyperlink in the electronic health record (EHR). The audio file is two minutes or less in length, as this is the optimal size for comprehension without overburdening the care provider. While conducting the interview, there is an opportunity for chaplains to provide spiritual and emotional support to loved ones and medical staff, contributing substantively to patient care, as is illustrated in the case studies.

Agent-Based Modeling and Simulation of Nosocomial Infection among Healthcare Workers during Ebola Virus Disease Outbreak in Sierra Leone.

Healthcare workers (HCWs) are often exposed to nosocomial infection when caring for patients with Ebola Virus Disease (EVD). During the 2014-2016 EVD outbreak in West Africa, more than 200 HCWs died of EVD in Sierra Leone. To determine the factors that are important for preventing infection among HCWs during EVD outbreak, we used agent-based modeling and simulation (ABMS) by focusing on education, training and performance of HCWs. Here, we assumed 1, 000 HCWs as "agents" to analyze their behavior within a given condition and selected four parameters (P1-P4) that are important in the prevention of infection: "initially educated HCWs (P1)", "initially educated trained (P2)", "probability of seeking training (P3)" and "probability of appropriate care procedure (P4)." After varying each parameter from 0% to 100%, P3 and P4 showed a greater effect on reducing the number of HCWs infected during EVD outbreak, compared with the other two parameters. The numbers of infected HCWs were decreased from 897 to 26 and from 1,000 to 59, respectively, when P3 or P4 was increased from 0% to 100%. When P2 was increased from 0% to 100%, the number of HCWs infected was decreased from 166 to 44. Paradoxically, the number of HCWs infected was increased from 56 to 109, when P1 was increased, indicating that initial education alone cannot prevent nosocomial infection. Our results indicate that effective training and appropriate care procedure play an important role in preventing infection. The present model is useful to manage nosocomial infection among HCWs during EVD outbreak.

Intensive Education of Health Care Workers Improves the Outcome of Ebola Virus Disease: Lessons Learned from the 2014 Outbreak in Sierra Leone.

The rare and deadly Ebola virus disease (EVD) is caused by Ebola virus (EBOV) infection. The 2014-2015 EVD outbreak in West Africa was unprecedented. Person-to-person transmission of EBOV by direct contact with the body or bodily fluids of an infected person through broken skin or unprotected mucous membrane caused rapid outbreak in communities. Nosocomial infection was the cause of death of many health care workers (HCWs). This paper aims to reveal the importance and effect of intensive education of HCWs when combating an outbreak such as EVD. We compared the curricula of two educational programs and analyzed their effects by the trend of weekly new patients. In September 2014, a three-day training program on infection, prevention and control (IPC) was organized for nurses, but it was not sufficient to achieve good outcome. In December 2014, a newly established National Ebola Training Academy was set up to offer a platform of clinical training modules for frontline Ebola response workers. This academy addressed the training needs of clinicians and hygienists who were working or will work at Ebola treatment centers that were established after the onset of the 2014 outbreak. Increased intensive contents and simulated training at the academy improved HCWs' understanding of EVD, IPC and patient care, which subsequently contributed to the survival of patients. The rapid settlement of the outbreak after introducing the Academy indicates that appropriate intensive education of HCWs is the key activity carried out to control the outbreak of EVD in Sierra Leone.

Nation-Wide Implementation of Disaster Medical Coordinators in Japan.

In the 2011 Great East Japan Earthquake (GEJE), successful medical and public health coordination by pre-assigned disaster medical coordinators saved many affected people, though the coordination itself had difficulties. This study aims to clarify the implementation and the challenges of disaster medical coordinators in Japan. We performed questionnaire surveillance in 2012 and 2014 to all prefectural government on assignment of disaster medical coordinators, their expected roles and supporting system. Out of all 47 prefectures, assignment or planning of disaster medical coordinators jumped up from four (8.5%) to 43 (91.5%) by the end of 2015. The most expected role is the coordination with Japan Disaster Medical Assistant Team (DMAT) and with other early responders. The evacuation center management, public health coordination and preparedness before disaster are less frequently expected. The supporting materials, human resource, and tools for communication vary according to the prefecture. Successful implementation requires the effort of health and governmental stakeholders. The coordination between prefectural and local coordinators and the coordination between medical and public health authorities still need to be improved. The roles of disaster medical coordinators depend on the local context and types of hazards. Education and training to build fundamental capacity is necessary. In conclusion, Japanese disaster medical system rapidly implemented disaster medical coordinator after GEJE. Their roles and standardization are challenging, but education, training and systematic support by the local government will enhance the effective preparedness and response of the health sector in disasters.

Survival of Australian lung cancer patients and the impact of distance from and attendance at a thoracic specialist centre: a data linkage study.

BACKGROUND: Lung cancer patients have better survival when treated in thoracic surgical (specialist) centres. AIMS: To determine whether outcome of non-small cell lung cancer (NSCLC) patients is poorer with increasing distance to the nearest accessible specialist hospital (NASH). METHODS: We linked cancer registry, hospital and death records of 23,871 NSCLC patients; 3240 localised, 2435 regional and 3540 distant stage patients hospitalised within 12 months of diagnosis were analysed. Distance from patients' residences to the NASH was measured using geographical coordinates. Cox proportional hazards models examined predictors of NSCLC death. RESULTS: Having a resection of the cancer, which admission to a specialist hospital made more likely, substantially reduced hazard of NSCLC death. Distance influenced hazard of death through both these variables; a patient was less likely to be admitted to a specialist hospital than a general hospital and less likely to have a resection the further they lived from the NASH. However, patients who lived distant from the NASH and were admitted to a specialist hospital were more likely to have a resection and less likely to die from NSCLC than patients admitted to a specialist hospital and living closer to the NASH. These patterns varied little with lung cancer stage. CONCLUSIONS: NSCLC outcome is best when patients are treated in a specialist hospital. Greater distance to the NASH can affect its outcome by reducing the likelihood of being treated in a specialist hospital. Research is needed into patient and health service barriers to referral of NSCLC patients for specialist care.

Prevalence and correlates of current smoking among medical oncology outpatients.

BACKGROUND: Continued smoking following a cancer diagnosis has adverse impacts on cancer treatment and puts individuals at risk of secondary cancers. Data on the prevalence and correlates of smoking among cancer patients are critical for successfully targeting smoking cessation interventions. AIMS: To explore among a sample of medical oncology outpatients (a) the prevalence of self-reported current smoking and (b) the demographic and psychosocial factors associated with self-reported smoking. METHODS: A heterogeneous sample of cancer patients aged 18 years or over was recruited from 1 of 11 medical oncology treatment centres across Australia. Patients completed a survey assessing the following: smoking status; socio-demographic, disease and treatment characteristics; time since diagnosis; anxiety; and depression. Factors associated with self-reported smoking were examined using a univariate and multivariate mixed-effects logistic regression. RESULTS: A total of 1379 patients returned surveys and 1338 were included in the analysis. The prevalence of current smoking was 10.9% (n = 146). After adjusting for treatment centre, patients aged 65 years and older and those without health concession cards were significantly less likely to smoke. Patients diagnosed with lung cancer and those without private health insurance were more likely to smoke. DISCUSSION: A minority of cancer patients reported continued smoking at an average time of 13 months post-diagnosis. Patients, who are younger, have been diagnosed with lung cancer and have lower socioeconomic status are at-risk groups and represent important targets for smoking cessation advice and intervention. Copyright © 2015 John Wiley & Sons, Ltd.

Investigation of poorer bladder cancer survival in women in NSW, Australia: a data linkage study.

OBJECTIVE: To investigate the associations of a range of personal and clinical variables with bladder cancer survival in men and women in NSW to see if we could explain why bladder cancer survival is consistently poorer in women than in men. PATIENTS AND METHODS: All 6880 cases of bladder cancers diagnosed in NSW between 2000 and 2008 were linked to hospital separation data and to deaths. Separate Cox proportional hazards regression models of hazard of bladder cancer death were constructed for those who did or did not undergo cystectomy. RESULTS: A total of 16% of patients with bladder cancer underwent cystectomy (16% of men and 15% of women). Women who underwent cystectomy were 26% more likely to die than men (hazard ratio [HR] 1.26, 95% confidence interval [CI] 1.00-1.59) after adjustment for age, stage, time from diagnosis to cystectomy, distance from treatment facility and country of birth. None of the above covariates had a material effect on the difference in hazard between women and men; however, when stratified by a history of cystitis, the adjusted hazard was 55% higher in women (HR 1.55, 95% CI 1.15-2.10) than in men with a history of cystitis while, in the absence of this history, there was no difference in the hazard between men and women (HR 0.99, 95% CI 0.57-1.70). This apparent modification of the effect of sex on bladder cancer outcome was not seen in patients treated only by resection: the adjusted HRs in women relative to men were 1.10 (95% CI 0.92-1.31) in those with a history of cystitis and 1.21 (95% CI 0.98-1.50) in those without. A history of haematuria did not modify appreciably the association of sex with bladder cancer outcome. CONCLUSION: Women's poorer survival from bladder cancer compared with that of men remains unexplained; however, the possibility that some factor associated with a history of cystitis may contribute to or explain the poorer outcome in women merits further investigation.

Effects of access to and treatment in specialist facilities on survival from epithelial ovarian cancer in Australian women: a data linkage study.

OBJECTIVE: The aim of this study was to determine whether the distance of residence from a Gynecological Oncology Service (GOS) was associated with a better survival from ovarian cancer. METHODS: We linked cancer registry records to hospital records for 3749 women with ovarian cancer diagnosed between 2000 and 2008 in New South Wales, Australia. Access to a GOS was measured in kilometers from a woman's geocoded address to the geocoded address of the closest public GOS hospital. Flexible parametric survival, Cox proportional hazards, and logistic regression models were fitted to examine whether better access to a GOS was associated with a better survival and whether extensive surgery was received for ovarian cancer after adjustment for patient, tumor, and treatment factors. RESULTS: Hazard of death from ovarian cancer was greater in women who were treated in a public general hospital than in women treated in a GOS hospital (hazards ratio, 0.77; 95% confidence interval [CI], 0.64-0.95), and greater in those who did not have extensive surgery than in those who did (hazards ratio, 0.47; 95% CI, 0.38-0.58). The further women with ovarian cancer lived from a public GOS hospital, the more likely they were to be treated in a public general hospital. Women were 19 times more likely (odds ratio, 19.40; 95% CI, 13.92-27.04) to be treated only in a general hospital when they lived 187 km or more from a public GOS hospital than women who lived within 5 km of one. CONCLUSIONS: Distance of residence from GOS hospitals in Australia is an important determinant of access to GOS hospitals. Treatment in a public or private GOS hospital and having surgery were the strongest predictors of survival from epithelial ovarian cancer. Research is required into the barriers to referral of patients with ovarian cancer for care in GOS hospitals; low population density limits options for supply of GOS in rural areas.

Lung cancer survival and stage at diagnosis in Australia, Canada, Denmark, Norway, Sweden and the UK: a population-based study, 2004-2007.

BACKGROUND: The authors consider whether differences in stage at diagnosis could explain the variation in lung cancer survival between six developed countries in 2004-2007. METHODS: Routinely collected population-based data were obtained on all adults (15-99 years) diagnosed with lung cancer in 2004-2007 and registered in regional and national cancer registries in Australia, Canada, Denmark, Norway, Sweden and the UK. Stage data for 57 352 patients were consolidated from various classification systems. Flexible parametric hazard models on the log cumulative scale were used to estimate net survival at 1 year and the excess hazard up to 18 months after diagnosis. RESULTS: Age-standardised 1-year net survival from non-small cell lung cancer ranged from 30% (UK) to 46% (Sweden). Patients in the UK and Denmark had lower survival than elsewhere, partly because of a more adverse stage distribution. However, there were also wide international differences in stage-specific survival. Net survival from TNM stage I non-small cell lung cancer was 16% lower in the UK than in Sweden, and for TNM stage IV disease survival was 10% lower. Similar patterns were found for small cell lung cancer. CONCLUSIONS: There are comparability issues when using population-based data but, even given these constraints, this study shows that, while differences in stage at diagnosis explain some of the international variation in overall lung cancer survival, wide disparities in stage-specific survival exist, suggesting that other factors are also important such as differences in treatment. Stage should be included in international cancer survival studies and the comparability of population-based data should be improved.

Stage at diagnosis and colorectal cancer survival in six high-income countries: a population-based study of patients diagnosed during 2000-2007.

BACKGROUND: Large international differences in colorectal cancer survival exist, even between countries with similar healthcare. We investigate the extent to which stage at diagnosis explains these differences. METHODS: Data from population-based cancer registries in Australia, Canada, Denmark, Norway, Sweden and the UK were analysed for 313 852 patients diagnosed with colon or rectal cancer during 2000-2007. We compared the distributions of stage at diagnosis. We estimated both stage-specific net survival and the excess hazard of death up to three years after diagnosis, using flexible parametric models on the log-cumulative excess hazard scale. RESULTS: International differences in colon and rectal cancer stage distributions were wide: Denmark showed a distribution skewed towards later-stage disease, while Australia, Norway and the UK showed high proportions of 'regional' disease. One-year colon cancer survival was 67% in the UK and ranged between 71% (Denmark) and 80% (Australia and Sweden) elsewhere. For rectal cancer, one-year survival was also low in the UK (75%), compared to 79% in Denmark and 82-84% elsewhere. International survival differences were also evident for each stage of disease, with the UK showing consistently lowest survival at one and three years. CONCLUSION: Differences in stage at diagnosis partly explain international differences in colorectal cancer survival, with a more adverse stage distribution contributing to comparatively low survival in Denmark. Differences in stage distribution could arise because of differences in diagnostic delay and awareness of symptoms, or in the thoroughness of staging procedures. Nevertheless, survival differences also exist for each stage of disease, suggesting unequal access to optimal treatment, particularly in the UK.

Impact of health systems reform on COVID-19 control in Sierra Leone: a case study.

BACKGROUND: There are various impacts of COVID-19 on health systems of the world. The health systems of low- and middle-income countries are less developed. Therefore, they have greater tendencies to experience challenges and vulnerabilities in COVID-19 control compared to high-income countries. It is important to contain the spread of the virus, and likewise strengthen the capacity of health systems in order for the response to be effective and swift. The experience from 2014 to 2016 Ebola outbreak in Sierra Leone served as preparation for COVID-19 outbreak. The aim of this study is to determine how control of COVID-19 outbreak in Sierra Leone was enhanced by the lessons learned from 2014 to 2016 Ebola outbreak, and health systems reform. METHODS: We used data from a qualitative case study conducted in four districts in Sierra Leone through key informant interviews, focus group discussions, document, and archive record reviews. A total of 32 key informant interviews and 14 focus group discussions were conducted. A thematic analysis was used to analyze the data, and all transcripts were coded and analyzed with the aid of ATLAS.ti 9 software program. RESULTS: The six themes obtained were composed of categories that connect with each other and with codes to form networks. The analysis of the responses demonstrated that "Multisectoral Leadership and Cooperation", "Government Collaboration among International Partners", and "Awareness in the Community" were among the key interventions used during the control of 2014-2016 Ebola virus disease outbreak, which were applied in the control of COVID-19. An infectious disease outbreak control model was proposed based on the results obtained from the analysis of the lessons learned during the Ebola virus disease outbreak, and health systems reform. CONCLUSIONS: "Multisectoral Leadership and Cooperation", "Government Collaboration among International Partners" and "Awareness in the Community" are key strategies that enhanced the control of the COVID-19 outbreak in Sierra Leone. It is recommended that they are implemented in controlling COVID-19 pandemic or any other infectious disease outbreak. The proposed model can be used in controlling infectious disease outbreaks, especially in low- and middle-income countries. Further research is needed to validate the usefulness of these interventions in overcoming an infectious disease outbreak.

The process of overcoming conflicts among teachers in the implementation of comprehensive sexuality education at ordinary public senior high schools in Mataram City, Indonesia: a qualitative study.

BACKGROUND: Comprehensive sexuality education (CSE), which aims to help young people make responsible choices and acquire scientific knowledge and skills, has been promoted by UNESCO. Teachers experience conflicts in implementing CSE when teaching sexual topics in the local context, especially as the delivery of sexual knowledge and contraceptive methods is often prohibited by religious and traditional cultural norms. It was reported that there were multiple challenges in the implementation of sex education due to the religious and cultural background of societies and communities in Islamic countries. This study aimed to clarify the process of overcoming the conflicts, explore teachers' recognition and perception related to the implementation of CSE, and to suggest recommendations for promoting CSE in Islamic areas. METHODS: This qualitative study combined the methods of focus group discussions (FGDs) and in-depth interviews (IDIs) to explore the conflict among teachers. Ten ordinary public senior high schools in Mataram City, Indonesia, agreed to participate, and in total, 59 participants were involved in this study. FGDs were conducted with teachers (n = 49), and IDIs were focused on school principals (n = 10) in each school. The collected interview data were analyzed using a deductive thematic analysis and the findings triangulated for both the FGDs and IDIs. RESULTS: Overall, the teachers experienced conflicts in relation to religion, cultural background, and gender inequality in implementing CSE. The present study revealed the mutual recognition among teachers and acceptance of diverse backgrounds in the implementation of CSE at ordinary public senior high schools in Mataram City. Despite teachers reporting multiple conflicts, they made efforts to overcome these conflicts through mutual recognition and provided comprehensive guidance. The present findings indicated that teachers adapted CSE to follow multiple religions and cultural backgrounds. CONCLUSIONS: The teachers accepted diverse backgrounds and provided CSE by collaborating with related educational subjects and external institutions to overcome conflicts. To provide more specialized education, it would be necessary to advocate a formal policy that might be accepted by diverse societies. Further research is necessary to apply the findings and recommendations for CSE implementation globally in the contexts of different countries.

Second primary malignancies among women with uterine sarcoma.

OBJECTIVE: Uterine sarcomas (US) are rare malignancies with unclear aetiology. Studies on uterine sarcomas in the setting of second primary malignant tumours can provide clues to aetiology and identify side effects of different treatments. METHODS: A cohort of 8606 cases of US was extracted from the data from 13 cancer registries and followed for second primary cancers within the period 1943-2000. Standardized incidence ratios (SIRs) were calculated, and Poisson regression analyses were performed. RESULTS: There were 499 cancer cases observed after a first diagnosis of US (SIR 1.26, 95%CI 1.16-1.38). SIRs were elevated for cancers of the mouth and pharynx (2.16, 95%CI 1.15-3.69), colorectum (1.60, 95%CI 1.28-1.98), lung (1.73, 95%CI 1.27-2.29), breast (1.25, 95%CI 1.05-1.49), urinary bladder (1.74, 95%CI 1.02-2.79), kidney (2.00, 95%CI 1. 24-3.06), thyroid gland (2.74, 95%CI 1.42-4.79), and soft tissue sarcoma (5.23, 95%CI 2.51-9.62). The risk of breast cancer increased along with increasing age of US diagnosis (p trend 0.040). The risk of kidney cancer increased along with decreasing age of US diagnosis (p trend 0.004) and short time since the US diagnosis (p trend 0.018). CONCLUSIONS: Our study demonstrated increased risk of certain cancers following a diagnosis of US. The elevated risk for breast cancer may indicate shared hormonal aetiology, while the increased risk of colorectal and bladder cancers after US may be caused by radiation therapy of US. The clustering of smoking-related cancers after US is worth exploring in the future.

Stage at diagnosis and ovarian cancer survival: evidence from the International Cancer Benchmarking Partnership.

OBJECTIVE: We investigate what role stage at diagnosis bears in international differences in ovarian cancer survival. METHODS: Data from population-based cancer registries in Australia, Canada, Denmark, Norway, and the UK were analysed for 20,073 women diagnosed with ovarian cancer during 2004-07. We compare the stage distribution between countries and estimate stage-specific one-year net survival and the excess hazard up to 18 months after diagnosis, using flexible parametric models on the log cumulative excess hazard scale. RESULTS: One-year survival was 69% in the UK, 72% in Denmark and 74-75% elsewhere. In Denmark, 74% of patients were diagnosed with FIGO stages III-IV disease, compared to 60-70% elsewhere. International differences in survival were evident at each stage of disease; women in the UK had lower survival than in the other four countries for patients with FIGO stages III-IV disease (61.4% vs. 65.8-74.4%). International differences were widest for older women and for those with advanced stage or with no stage data. CONCLUSION: Differences in stage at diagnosis partly explain international variation in ovarian cancer survival, and a more adverse stage distribution contributes to comparatively low survival in Denmark. This could arise because of differences in tumour biology, staging procedures or diagnostic delay. Differences in survival also exist within each stage, as illustrated by lower survival for advanced disease in the UK, suggesting unequal access to optimal treatment. Population-based data on cancer survival by stage are vital for cancer surveillance, and global consensus is needed to make stage data in cancer registries more consistent.

Second malignancies after childhood noncentral nervous system solid cancer: Results from 13 cancer registries.

Children diagnosed with noncentral nervous system solid cancers (NCNSSC) experience several adverse late effects, including second malignant neoplasm. The aim of our study was to assess the risk of specific second malignancies after a childhood NCNSSC. Diagnosis and follow-up data on 10,988 cases of NCNSSC in children (0-14 years) were obtained from 13 registries. Standardized incidence ratios (SIRs) with 95% confidence intervals (CI) and cumulative incidence of second malignancies were computed. We observed 175 second malignant neoplasms, yielding a SIR of 4.6, 95% CI: 3.9-5.3. When considering second cancers with at least 10 occurrences, highest relative risks were found for second malignant bone tumors (SIR = 26.4, 16.6-40.0), soft tissue sarcomas (SIR = 14.1, 6.7-25.8) and myeloid leukemia (SIR = 12.7, 6.3-22.8). Significant increased risks for all malignancies combined were observed after sympathetic nervous system tumors (SIR = 11.4, 5.2-21.6), retinoblastomas (SIR = 7.3, 5.4-9.8), renal tumors (SIR = 5.7, 3.8-8.0), malignant bone tumors (SIR = 5.6, 3.7-8.2), soft tissue sarcomas (SIR = 4.7, 3.2-6.8), germ-cell, trophoblastic and other gonadal neoplasms (SIR = 2.5, 1.1-4.9), carcinomas and other malignant epithelial neoplasms (SIR = 2.2, 1.4-3.3). The highest risk of a second malignancy of any type occurred 5 to 9 years after NCNSSC (SIR = 9.9, 6.8-13.9). The cumulative incidence of second malignancies 10 years after the first neoplasm was eight times higher among NCNSSC survivors than in the general population, with the absolute difference between observed and expected cumulative incidence still increasing after 50 years of follow-up. Children who survived a NCNSSC experience a large increased risk of developing a new malignancy, even many years after their initial diagnosis.

High constant incidence rates of second primary cancers of the head and neck: a pooled analysis of 13 cancer registries.

Scanty data are available on the incidence (i.e., the absolute risk) of second cancers of the head and neck (HN) and its pattern with age. We investigated this issue using data from a multicentric study of 13 population-based cancer registries from Europe, Canada, Australia and Singapore for the years 1943-2000. A total of 99,257 patients had a first primary HN cancer (15,985 tongue, 22,378 mouth, 20,758 pharyngeal, and 40,190 laryngeal cancer), contributing to 489,855 person-years of follow-up. A total of 1,294 of the patients (1.3%) were diagnosed with second HN cancers (342 tongue, 345 mouth, 418 pharynx and 189 larynx). Male incidence rates of first HN cancer steeply increased from 0.68/100,000 at age 30-34 to 46.2/100,000 at age 70-74, and leveled off at older age; female incidence increased from 0.50/100,000 at age 30-34 to 16.5/100,000 at age 80-84. However, age-specific incidence of second HN cancers after a first HN cancer in men was around 200-300/100,000 between age 40-44 and age 70-74 and tended to decline at subsequent ages (150/100,000 at age 80-84); in women, incidence of second HN cancers was around 200-300/100,000 between age 45-49 and 80-84. The patterns of age-specific incidence were consistent for different subsites of second HN cancer and sexes; moreover, they were similar for age-specific incidence of first primary HN cancer in patients who subsequently developed a second HN cancer. The incidence of second HN cancers does not increase with age, but remains constant, or if anything, decreases with advancing age.

Recruitment of representative samples for low incidence cancer populations: do registries deliver?

BACKGROUND: Recruiting large and representative samples of adolescent and young adult (AYA) cancer survivors is important for gaining accurate data regarding the prevalence of unmet needs in this population. This study aimed to describe recruitment rates for AYAs recruited through a cancer registry with particular focus on: active clinician consent protocols, reasons for clinicians not providing consent and the representativeness of the final sample. METHODS: Adolescents and young adults aged 14 to 19 years inclusive and listed on the cancer registry from January 1 2002 to December 31 2007 were identified. An active clinician consent protocol was used whereby the registry sent a letter to AYAs primary treating clinicians requesting permission to contact the survivors. The registry then sent survivors who received their clinician's consent a letter seeking permission to forward their contact details to the research team. Consenting AYAs were sent a questionnaire which assessed their unmet needs. RESULTS: The overall consent rate for AYAs identified as eligible by the registry was 7.8%. Of the 411 potentially eligible survivors identified, just over half (n = 232, 56%) received their clinician's consent to be contacted. Of those 232 AYAs, 65% were unable to be contacted. Only 18 AYAs (7.8%) refused permission for their contact details to be passed on to the research team. Of the 64 young people who agreed to be contacted, 50% (n = 32) completed the questionnaire. CONCLUSIONS: Cancer registries which employ active clinician consent protocols may not be appropriate for recruiting large, representative samples of AYAs diagnosed with cancer. Given that AYA cancer survivors are highly mobile, alternative methods such as treatment centre and clinic based recruitment may need to be considered.