In Their Own Words: Adults' Lived Experiences With Intermittent Catheterization.

PURPOSE: The aim of this study was to identify themes related to barriers and facilitators to the integration of intermittent catheterization (IC) in the daily lives or persons using the form of bladder evacuation. DESIGN: Descriptive, qualitative study. SUBJECTS AND SETTING: A purposive sample of 25 adults from 5 countries (United States, United Kingdom, Germany, France, and the Netherlands) was assembled. All participants had used IC as their primary method of bladder emptying for at least 1 year and, in that time, had used as least 2 different IC products. METHODS: Guided telephone interviews with each participant were conducted by professional staff fluent in each participant's local language as well as trained in qualitative data collection. Interviews were digitally recorded and subsequently transcribed verbatim into English for analysis. We used ATLAS.ti qualitative analysis software (version 7.5.11) to assist with data organization and identification of major themes. Descriptive statistics (eg, mean, standard deviation, or frequency) were used to characterize the sample in terms of sociodemographic and clinical characteristics as collected during the interview. RESULTS: Analysis revealed 9 main themes around individuals' lived experiences of IC: initial fear, urinary tract infection, pain/discomfort, independence, choice, community, life quality, resilience, and acceptance. DISCUSSION: Our results indicate that IC is perceived as a burden by some, but not all, users. The challenge, and opportunity, is to learn more about what has gone right for those who have adapted and to leverage the clinical, practical, psychological, and social factors that enable individuals to integrate IC into the rhythm of their daily lives.

Partnership for defining the impact of 12 selected rare CNS tumors: a report from the CBTRUS and the NCI-CONNECT.

PURPOSE: Population-based cancer statistics, including histology-specific incidence, prevalence, and survival are essential to evaluating the total burden due to disease in a population. The National Cancer Institute's (NCI) Comprehensive Oncology Network Evaluating Rare CNS Tumors (NCI-CONNECT) was developed to better understand tumor biology and patient outcomes for 12 selected brain and other central nervous system (CNS) tumor histologies that are rare in adults to improve approaches to care and treatment. The aim of this study was to determine the incidence, prevalence, and survival of these selected rare histologies. METHODS: Data from the Central Brain Tumor Registry of the United States (CBTRUS) from 2000 to 2014 were used to calculate average annual age-adjusted incidence rates (AAIR) per 100,000 population overall and by sex, race, ethnicity, and age. NCI's Surveillance, Epidemiology and End Results (SEER) data were used to calculate relative survival (RS) estimates. Point prevalence for 2014 was estimated using annual age-specific incidence and survival from CBTRUS and SEER, respectively. RESULTS: Overall AAIR was 1.47 per 100,000 for all 12 rare histologies combined, with the highest histology-specific incidence in oligodendrogliomas (AAIR = 0.40/100,000). Overall, most histologies were more common in males, adults (age 40 + ), Whites, and non-Hispanics. Ependymomas were the most prevalent histology at 4.11 per 100,000; followed by oligodendrogliomas at 3.68 per 100,000. Relative survival at 1-, 5-, and 10-years was 82.3%, 64.0%, and 55.4%, respectively for all 12 selected brain and other CNS tumor types combined. Ependymomas had the highest RS (1-year = 94.2%, 5-year = 83.9%, 10-year = 78.6%) and gliosarcomas had the lowest relative survival rate (1-year = 42.5%, 5-year = 5.6%, 10-year = 2.9%) at all three time points. CONCLUSIONS: Incidence and prevalence of these rare brain and other CNS tumor histologies have not been previously reported. Along with survival, these data provide a statistical foundation to understand the impact of these cancers and provide important disease-specific data for the design of prospective clinical trials.

Global incidence of malignant brain and other central nervous system tumors by histology, 2003-2007.

BACKGROUND: Previous reports have shown that overall incidence of malignant brain and other central nervous system (CNS) tumors varied significantly by country. The aim of this study was to estimate histology-specific incidence rates by global region and assess incidence variation by histology and age. METHODS: Using data from the Central Brain Tumor Registry of the United States (CBTRUS) and the International Agency for Research on Cancer's (IARC) Cancer Incidence in Five Continents X (including over 300 cancer registries), we calculated the age-adjusted incidence rates (AAIR) per 100000 person-years and 95% CIs for brain and other CNS tumors overall and by age groups and histology. RESULTS: There were significant differences in incidence by region. Overall incidence of malignant brain tumors per 100000 person-years in the US was 5.74 (95% CI = 5.71-5.78). Incidence was lowest in Southeast Asia (AAIR = 2.55, 95% CI = 2.44-2.66), India (AAIR = 2.85, 95% CI = 2.78-2.93), and East Asia (AAIR = 3.07, 95% CI = 3.02-3.12). Incidence was highest in Northern Europe (AAIR = 6.59, 95% CI = 6.52-6.66) and Canada (AAIR = 6.53, 95% CI = 6.41-6.66). Astrocytic tumors showed the broadest variation in incidence regionally across the globe. CONCLUSION: Brain and other CNS tumors are a significant source of cancer-related morbidity and mortality worldwide. Regional differences in incidence may provide clues toward genetic or environmental causes as well as a foundation for broadening knowledge of their epidemiology. Gaining a comprehensive understanding of the epidemiology of malignant brain tumors globally is critical to researchers, public health officials, disease interest groups, and clinicians and contributes to collaborative efforts in future research.