Cancer patient perspectives on survivorship goals from the Smart Patients online community.

BACKGROUND: Cancer impacts individuals' life goals. Recent cancer care guidelines recommend discussing life goals as part of patient-provider communication. The goal of this study was to understand patients' attitudes toward goal sharing with their cancer care providers. PATIENTS AND METHODS: Semi-structured questionnaires were conducted via email with cancer patients and survivors (n = 39) on an online social network called Smart Patients. Participants answered open-ended questions about their life goals. They then completed a survey regarding their attitudes toward goal sharing with healthcare providers. The study team used an integrated inductive-deductive qualitative analysis to identify conceptual themes. RESULTS: Participants listed goals related to improving physical activity, control, enjoyment/leisure, and inner strength while reducing pain, anxiety, fear of recurrence, and uncertainty. Most of these goals were life goals rather than goals specifically related to medical care. Across all goals, there was a focus on returning to normality. Our findings show that 87% of participants expect their cancer specialist to discuss their treatment preferences and goals regularly with them. However, participants were reluctant to share their goals with their providers. Respondents felt that their providers did not have an interest in their life goals or time to address them in addition to their medical treatment. CONCLUSION: Even though cancer patient-provider communication guidelines advocate for discussions around life goals, participants in this study expressed reluctance to share life goals with providers. Further efforts to align expectations of patients and providers may facilitate adherence to cancer communication guidelines about life goals. IMPLICATIONS FOR CANCER SURVIVORS: Cancer survivors should be aware that discussing life goals is part of recommended communication with their cancer care teams.

Factors associated with biomedical research participation within community-based samples across 3 National Cancer Institute-designated cancer centers.

BACKGROUND: Engaging diverse populations in biomedical research, including biospecimen donation, remains a national challenge. This study examined factors associated with an invitation to participate in biomedical research, intent to participate in biomedical research in the future, and participation in biomedical research and biospecimen donation among a diverse, multilingual, community-based sample across 3 distinct geographic areas. METHODS: Three National Cancer Institute-designated cancer centers engaged in community partnerships to develop and implement population health assessments, reaching a convenience sample of 4343 participants spanning their respective catchment areas. Data harmonization, multiple imputation, and multivariable logistic modeling were used. RESULTS: African Americans, Hispanic/Latinos, and other racial minority groups were more likely to be offered opportunities to participate in biomedical research compared to whites. Access to care, history of cancer, educational level, survey language, nativity, and rural residence also influenced opportunity, intent, and actual participation in biomedical research. CONCLUSIONS: Traditionally underserved racial and ethnic groups reported heightened opportunity and interest in participating in biomedical research. Well-established community partnerships and long-standing community engagement around biomedical research led to a diverse sample being reached at each site and may in part explain the current study findings. However, this study illustrates an ongoing need to establish trust and diversify biomedical research participation through innovative and tailored approaches. National Cancer Institute-designated cancer centers have the potential to increase opportunities for diverse participation in biomedical research through community partnerships and engagement. Additional work remains to identify and address system-level and individual-level barriers to participation in both clinical trials and biospecimen donation for research.

Health Information-seeking Behaviors and Preferences of a Diverse, Multilingual Urban Cohort.

INTRODUCTION: In order to address health disparities, it is important to understand how vulnerable individuals seek information. This study used an adapted version of the Health Information National Trends Survey (HINTS) administered in English, Spanish, and Chinese to describe the behaviors and preferences of a diverse group of vulnerable urban residents. METHODS: We administered a modified HINTS survey in English, Spanish, and Chinese and used purposive sampling to ensure 50% were non-English speakers evenly divided between Spanish and Chinese speakers, and 50% of English-speakers identified as Black. We used multivariable logistic regression to determine characteristics associated with sources used for health information and preferences for delivery of health information. RESULTS: Among 1027survey respondents (514 English, 256 Spanish, 260 Chinese), 55% had adequate health literacy, and 50% reported household income <$20,000, but 77% reported owning a smartphone. A plurality sought health information on the Internet (39%) or from a health care provider (36%). In multivariable analyses, smartphone ownership predicted higher odds of seeking health information on the Internet [odds ratio, (OR) 2.98; 95% confidence interval (CI), 1.81-4.91]. Participants most preferred email (41%) and brochures (40%) for delivery of health information, but non-English survey respondents were less likely to prefer email: Spanish (OR, 0.30; 95% CI, 0.11-0.83) and Chinese (OR, 0.25; 95% CI, 0.09-0.71). Smartphone ownership predicted an email preference (OR, 2.19; 95% CI, 1.43-3.36). CONCLUSIONS: Among vulnerable populations, smartphone ownership and language preferences impact preferences for seeking and receiving health information. These preferences need to be considered in designing health messages.

Facts or stories? How to use social media for cervical cancer prevention: A multi-method study of the effects of sender type and content type on increased message sharing.

Social media has become a valuable tool for disseminating cancer prevention information. However, the design of messages for achieving wide dissemination remains poorly understood. We conducted a multi-method study to identify the effects of sender type (individuals or organizations) and content type (personal experiences or factual information) on promoting the spread of cervical cancer prevention messages over social media. First, we used observational Twitter data to examine correlations between sender type and content type with retweet activity. Then, to confirm the causal impact of message properties, we constructed 900 experimental tweets according to a 2 (sender type) by 2 (content type) factorial design and tested their probabilities of being shared in an online platform. A total of 782 female participants were randomly assigned to 87 independent 9-person online groups and each received a unique message feed of 100 tweets drawn from the 4 experimental cells over 5 days. We conducted both tweet-level and group-level analyses to examine the causal effects of tweet properties on influencing sharing behaviors. Personal experience tweets and organizational senders were associated with more retweets. However, the experimental study revealed that informational tweets were shared significantly more (19%, 95% CI: 11 to 27) than personal experience tweets; and organizational senders were shared significantly more (10%, 95% CI: 3 to 18) than individual senders. While rare personal experience messages can achieve large success, they are generally unsuccessful; however, there is a reproducible causal effect of messages that use organizational senders and factual information for achieving greater peer-to-peer dissemination.

Social Media as a Tool to Promote Health Awareness: Results from an Online Cervical Cancer Prevention Study.

Online social media platforms represent a promising opportunity for public health promotion. Research is limited, however, on the effectiveness of social media at improving knowledge and awareness of health topics and motivating healthy behavior change. Therefore, we investigated whether participation in an online social media platform and receipt of brief, tailored messages is effective at increasing knowledge, awareness, and prevention behaviors related to human papillomavirus (HPV) and cervical cancer. We conducted an online study in which 782 recruited participants were consecutively assigned to nine-person groups on a social media platform. Participants were shown a unique random set of 20 tailored messages per day over five days. Participants completed a baseline and post survey to assess their knowledge, awareness, and prevention behaviors related to HPV and cervical cancer. There were no statistically significant changes in knowledge and prevention behaviors from the baseline to the post survey among study participants. There was a modest, statistically significant change in response to whether participants had ever heard of HPV, increasing from 90 to 94% (p = 0.003). Our findings suggest that most study participants had substantial knowledge, awareness, and engagement in positive behaviors related to cervical cancer prevention at the start of the study. Nevertheless, we found that HPV awareness can be increased through brief participation in an online social media platform and receipt of tailored health messages. Further investigation that explores how social media can be used to improve knowledge and adoption of healthy behaviors related to cervical cancer is warranted.

Using Social Media to Target Cancer Prevention in Young Adults: Viewpoint.

Focusing on primary cancer prevention can reduce its incidence. Changing health behaviors is critical to cancer prevention. Modifiable cancer risk factors include lifestyle behaviors related to vaccination, physical activity, weight control and maintenance, alcohol consumption, and tobacco use. These health habits are often formed in young adulthood, a life stage which currently intersects with the growing population of digital natives whose childhood occurred in the internet era. Social media is a critical communication medium to reach this population of digital natives. Using a life course perspective, the purpose of this viewpoint paper is to describe the current landscape of nascent research using social media to target cancer prevention efforts in young adults and propose future directions to strengthen the scientific knowledge supporting social media strategies to promote cancer prevention behaviors. Leveraging social media as a health promotion tool is a promising strategy to impact modifiable behavioral risk factors for cancer and warrants further research on developing effective communication strategies in young adults to prevent cancer in the future generations.

Educational Interventions to Promote Healthy Nutrition and Physical Activity Among Older Chinese Americans: A Cluster-Randomized Trial.

OBJECTIVES: To evaluate the efficacy of an in-language intervention of 2 lectures plus printed materials versus printed materials alone on knowledge and adherence to nutrition and physical activity guidelines among older Chinese Americans in San Francisco, California. METHODS: From August 2010 to September 2013, we randomized 756 Chinese Americans aged 50 to 75 years to either lectures plus print (n = 361) or print (n = 357). Clusters were the participants recruited by each lay health worker. Intervention outcomes were changes in knowledge of recommended vegetable intake, fruit intake, and physical activity level and adherence to those recommendations from pre- to 6 months postintervention. RESULTS: The retention rate was 99%. At baseline, knowledge and adherence to recommendations were low. Print yielded increases in knowledge of recommended vegetable intake and physical activity level and adherence to fruit intake and physical activity recommendations. Lectures plus print had significant increases in all 6 outcomes. In multivariable models, lectures plus print was superior to print for knowledge of vegetable (adjusted odds ratio [AOR] = 12.61; 95% confidence interval [CI] = 6.50, 24.45) and fruit (AOR = 16.16; 95% CI = 5.61, 46.51) intake recommendations and adherence to vegetable intake recommendations (AOR = 5.53; 95% CI = 1.96, 15.58). CONCLUSIONS: In-language print materials, alone and combined with lectures, increased nutrition and physical activity knowledge and behaviors among older Chinese Americans.

Healthcare Communication Barriers and Self-Rated Health in Older Chinese American Immigrants.

Older Chinese immigrants are a growing population in the United States who experience multiple healthcare communication barriers such as limited English proficiency and low health literacy. Each of these obstacles has been associated with poor health outcomes but less is known about their effects in combination. This study examined the association between healthcare communication barriers and self-rated health among older Chinese immigrants. Cross-sectional survey data were obtained from 705 Chinese American immigrants ages 50-75 living in San Francisco, California. Communication barriers examined included spoken English proficiency, medical interpreter needs, and health literacy in written health information. The study sample (81 % females, mean age = 62) included 67 % who spoke English poorly or not at all, 34 % who reported needing a medical interpreter, and 37 % who reported "often" or "always" needing assistance to read health information. Two-thirds reported poor self-rated health; many reported having access to racial-concordant (74 %) and language-concordant (86 %) healthcare services. Both poor spoken English proficiency and low health literacy were associated with poor self-rated health, independent of other significant correlates (unemployment, chronic health conditions, and having a primary doctor who was ethnic Chinese). Results revealed that spoken English proficiency and print health literacy are independent communication barriers that are directly associated with health status among elderly Chinese American immigrants. Access to racial- or language-concordant health care services did not appear to resolve these barriers. These findings underscore the importance of addressing both spoken and written healthcare communication needs among older Chinese American immigrants.

Engaging traditional medicine providers in colorectal cancer screening education in a chinese american community: a pilot study.

INTRODUCTION: Although colorectal cancer (CRC) screening is effective in preventing colon cancer, it remains underused by Asian Americans. Because Chinese Americans often use traditional Chinese medicine (TCM), we conducted a pilot study to explore the feasibility and acceptability of having TCM providers deliver education about CRC screening. METHODS: Four TCM providers (2 herbalists and 2 acupuncturists) were trained to deliver small-group educational sessions to promote CRC screening. Each provider recruited 15 participants aged 50 to 75. Participants completed a baseline survey on CRC-related knowledge, attitudes, and behaviors and then attended one 2-hour educational session delivered by the providers in Cantonese or Mandarin. Three months later, participants completed a postintervention survey. RESULTS: Sixty participants were recruited from the San Francisco Chinatown neighborhood. The average age was 62.4 years. Most participants had limited English proficiency (96.7%), annual household income less than $20,000 per year (60%), and low educational attainment (65.1% < high school education). At postintervention (n = 57), significant increases were found in having heard of CRC (from 52.6% to 79.0%, P < .001) and colon polyps (from 64.9% to 84.2%, P < .001). Knowledge regarding screening frequency recommendations also increased significantly. The rate of ever having received any CRC screening test increased from 71.9% to 82.5% (P <.001). The rate of up-to-date screening increased from 70.2% to 79.0% (P = .04). CONCLUSION: The findings suggest that TCM providers can be trained to deliver culturally and linguistically appropriate outreach on CRC screening within their community. Participants reached by TCM providers increased CRC knowledge and self-reported CRC screening.

Experiences and perceptions of medical discrimination among a multiethnic sample of breast cancer patients in the Greater San Francisco Bay Area, California.

OBJECTIVES: We conducted qualitative interviews with breast cancer survivors to identify themes related to institutional, personally mediated, and internalized discrimination in the medical setting. METHODS: We conducted 7 focus groups and 23 one-on-one interviews with a multiethnic sample of breast cancer survivors randomly selected from a population-based registry covering the Greater San Francisco Bay Area, California. RESULTS: Participants reported experiencing different forms of medical discrimination related to class, race, and language. Among African Americans, participants reported experiencing internalized discrimination and personal or group discrimination discrepancy-perceiving discrimination against them as a racial/ethnic group, yet not perceiving or discussing personal experiences of discrimination. Among Asian immigrants, participants reported experiencing institutional and personally mediated overt types of discrimination, including lack of access to quality and readily available translation services. Our results also indicated well-established coping mechanisms in response to discrimination experiences in both groups. CONCLUSIONS: Participants reported experiencing medical discrimination at all 3 levels, which may have deleterious health effects through the biopsychosocial stress pathway and through active coping mechanisms that could lead to delayed- or underutilization of the health care system to avoid discrimination.

Switching away from Cigarette Smoking with JUUL: Populations of Special Interest.

Objectives: In this study, we examined complete switching away from cigarettes across various medico-socio-demographic subpopulations of adult smokers who purchased a JUUL Starter Kit (JSK) electronic nicotine delivery system. Methods: We analyzed trajectories of smoking over 12 months in 17,986 adult smokers who purchased a JSK. Populations of special interest were characterized by race/ethnicity, income, diagnoses of potentially smoking-related illness (SRI), depression, and anxiety. Results: Across all 16 subgroups examined, a consistent pattern of trends was observed where complete switching increased, and dual-use decreased over time. Non-Hispanic Asian race/ethnicity, low income, diagnoses of potential SRI, depression, and anxiety were associated with significantly lower switching rates; however, complete switching rates at month 12 were near 50% for all groups, and surpassed the dual-use rates in all subgroups except for those with potential SRI. Conclusions: Substantial rates of complete switching were consistently achieved across all medico-socio-demographic subgroups 12 months following the purchase of the JSK. The potential benefits of switching with JUUL on smokers are likely to be experienced by a wide range of adult smokers.

Improving Patient Safety in Public Hospitals: Developing Standard Measures to Track Medical Errors and Process Breakdowns.

OBJECTIVE: The aim of the study was to develop standards for tracking patient safety gaps in ambulatory care in safety net health systems. METHODS: Leaders from five California safety net health systems were invited to participate in a modified Delphi process sponsored by the Safety Promotion Action Research and Knowledge Network (SPARKNet) and the California Safety Net Institute in 2016. During each of the three Delphi rounds, the feasibility and validity of 13 proposed patient safety measures were discussed and prioritized. Surveys and transcripts from the meetings were analyzed to understand the decision-making process. RESULTS: The Delphi process included eight panelists. Consensus was reached to adopt 9 of 13 proposed measures. All 9 measures were unanimously considered valid, but concern was expressed about the feasibility of implementing several of the measures. CONCLUSIONS: Although safety net health systems face high barriers to standardized measurement, our study demonstrates that consensus can be reached on acceptable and feasible methods for tracking patient safety gaps in safety net health systems. If accompanied by the active participation key stakeholder groups, including patients, clinicians, staff, data system professionals, and health system leaders, the consensus measures reported here represent one step toward improving ambulatory patient safety in safety net health systems.

Switching away from Cigarettes across 12 Months among Adult Smokers Purchasing the JUUL System.

Objectives: In this study, we assessed complete switching away from cigarette smoking among adult smokers who purchased a JUUL Starter Kit (JSK). Methods: Adult (age ≥ 21) established smokers (smoked ≥ 100 lifetime cigarettes) who purchased a JSK in 2018 were invited to complete online surveys 1, 2, 3, 6, 9 and 12 months after initial JSK purchase. Point prevalence of switching (no past 30-day smoking) was assessed at each follow-up. Repeated measures logistic regression models evaluated associations of sociodemographic factors, baseline smoking characteristics and time-varying JUUL System ("JUUL") use characteristics and switching across the 12-month period. Results: Respondents (N = 17,986) were 55.0% male, 78.3% white, mean age = 32.65 years (SD = 10.81), mean baseline cigarettes/day = 11.10 (SD = 8.16). The proportion self-reporting switching increased over time: one-month (27.2%[3718/13,650]), 2-month (36.4%[4926/13,533]), 3-month (41.0%[5434/13,257]), 6-month (46.6%[5411/11,621]), 9-month (49.4%[6017/12,186]), and 12-month (51.2%[6106/11,919]); 33.1% reported switching at both 9-month and 12-month follow-ups. In prospective analyses, smokers with lower cigarette dependence, shorter smoking history, lower cigarette consumption, more frequent JUUL use, greater satisfaction from initial JUUL use, and higher JUUL dependence were significantly more likely to switch. Conclusions: Rates of switching with JUUL increased over time. Over 50% of respondents reported complete switching away from cigarettes 12 months following purchase. Greater use of and dependence on JUUL predicted switching.

Cigarette Smoking Trajectories in Adult Former Smokers Using the JUUL System.

Objective: In this study, we assessed cigarette smoking over 12 months among adult former smokers who newly purchased a JUUL Starter Kit (JSK). Methods: Prevalence of past 30-day smoking and factors associated with smoking were assessed among adult (age ≥ 21) former established smokers, stratified as recent (quitting ≤ 12 months) and long-term quitters (> 12 months), who purchased a JSK and completed ≥ 1 of 6 follow-up assessments (N = 4786). Results: Recent quitters had higher rates (16.6%-19.9%) of past 30-day smoking than long-term quitters (6.4%-9.2%) across the 12-month period; smoking prevalence did not significantly increase over time in either subgroup. Few participants (6.5% of recent quitters, 2.8% of long-term quitters) reported smoking at both 9 and 12 months, a pattern that might indicate persistent smoking. Past 30-day JUUL use remained high (≥ 87%) across the 12 months. Participants who used JUUL more frequently were less likely to smoke. Conclusions: Among former smokers who purchased JUUL, prevalence rates of smoking were low and stable across the 12-month period, suggesting there was not a growing cohort of former smokers resuming smoking. Smoking was more common in recent quitters than long-term quitters. Greater use of JUUL was associated with reduced odds of smoking resumption.

Content shared on social media for national cancer survivors day 2018.

BACKGROUND: Studies estimate that the number of cancer survivors will double by 2050 due to improvements in diagnostic accuracy and treatment efficacy. Despite the growing population of cancer survivors, there is a paucity of research regarding how these individuals experience the transition from active treatment to long-term surveillance. While research has explored this transition from more organized venues, such as support groups for cancer survivors, this paper explores the discourses surrounding cancer survivorship on social media, paying particular attention to how individuals who identify as cancer survivors represent their experience. METHODS: We identified social media posts relating to cancer survivorship on Twitter and Instagram in early June 2018, in order to coincide with National Cancer Survivorship Day on June 3, 2018. We used nine pre-selected hashtags to identify content. For each hashtag, we manually collected the 150 most recent posts from Twitter and the 100 most recent plus the top 9 posts from Instagram. Our preliminary sample included 1172 posts; after eliminating posts from one hashtag due to irrelevance, we were left with 1063 posts. We randomly sampled 200 of these to create a subset for analysis; after review for irrelevant posts, 193 posts remained for analysis (118 from Instagram and 75 from Twitter). We utilized a grounded theory approach to analyze the posts, first open-coding a subset to develop a codebook, then applying the codebook to the rest of the sample and finally memo writing to develop themes. RESULTS: Overall, there is substantial difference in the tone and thematic content between Instagram and Twitter posts, Instagram takes on a more narrative form that represents journeys through cancer treatment and subsequent survivorship, whereas Twitter is more factual, leaning towards advocacy, awareness and fundraising. In terms of content type, 120 posts (62%) of the sample were images, of which 42 (35%) were images of the individual posting and 28 (23%) were images of patients posted by family or friends. Of the remaining images, 14 (12%) were of support groups and 7 (6%) were of family or friends. We identified four salient themes through analysis of the social media posts from Twitter and Instagram: social support, celebrating milestones and honoring survivors, expressing identity, and renewal vs. rebirth. DISCUSSION: We observed a marked relationship between physical appearance, functional status and survivorship. Additionally, our findings suggest the importance of social support for cancer patients and survivors as well as the role social media can pay in identity formation. CONCLUSION: Our findings suggest that individuals who identify as survivors on social media define their identity fluidly, incorporating elements of physical, emotional and psychological health as well as autonomy.

Egocentric social networks, lifestyle behaviors, and body size in the Asian Community Health Initiative (CHI) cohort.

BACKGROUND: Social networks have been shown to influence lifestyle behaviors in non-Latinx white (NLW) populations. We examined their influence in Asian American, Native Hawaiian and Pacific Islander (AANHPI) women. METHODS: We included 477 AANHPI women from the Asian Community Health Initiative Study who provided egocentric (degree, density, composition) and epidemiologic (size, types of ties) social network data and data on alcohol intake, physical activity, smoking, diet, and body size. We used logistic regression to evaluate associations of social network measures and dichotomous outcomes, and linear regression for continuous outcomes. RESULTS: In multivariable-adjusted analyses, higher degree and/or proportion of friends were significantly related to higher Western diet, higher odds of any alcohol consumption, and lower odds of physical inactivity and body mass index (BMI)≥23 kg/m2. Additionally, a higher proportion of NLW in women's networks was related to lower Asian diet but also lower waist size. Community participation was related to higher Western diet and lower Asian diet. By contrast, degree and/or proportion of relatives were positively related to BMI, waist size and to a higher odds of BMI≥23 kg/m2 and of ever smoking 100 cigarettes. Being married was related to fewer alcoholic drinks per week and higher Asian diet. A higher density of relationships with frequent contact was also associated with higher Asian diet. CONCLUSIONS: AANHPI women with larger proportions of friends and NLWs in their networks had more Western health behaviors and smaller body size. Norms for health behaviors and body size may be influenced by the size, composition, and structure of social networks, relevant to chronic disease prevention.

Advancing Cancer Control in San Francisco: Cancer Screening in Under-Represented Populations.

INTRODUCTION: Cancer risk and screening data are limited in their ability to inform local interventions to reduce the burden of cancer in vulnerable populations. The San Francisco Health Information National Trends Survey was developed and administered to assess the use of cancer-related information among under-represented populations in San Francisco to provide baseline data for the San Francisco Cancer Initiative. METHODS: The survey instrument was developed through consultation with research and community partners and translated into 4 languages. Participants were recruited between May and September 2017 through community-based snowball sampling with quotas to ensure adequate numbers of under-represented populations. Chi-square tests and multivariate logistic regression were used between 2018 and 2019 to assess differences in screening rates across groups and factors associated with cancer screening. RESULTS: One thousand twenty-seven participants were recruited. Asians had lower rates of lifetime mammogram (p=0.02), Pap test (p<0.01), and prostate-specific antigen test (p=0.04) compared with non-Asians. Hispanics had higher rates of lifetime mammogram (p=0.02), lifetime Pap test (p=0.01), recent Pap test (p=0.03), and lifetime prostate-specific antigen test (p=0.04) compared with non-Hispanics. Being a female at birth was the only factor that was independently associated with cancer screening participation (AOR=3.17, 95% CI=1.40, 7.19). CONCLUSIONS: Screening adherence varied by race, ethnicity, and screening type. A collaborative, community-based approach led to a large, diverse sample and may serve as a model for recruiting diverse populations to add knowledge about cancer prevention preferences and behaviors. Results suggest targeted outreach efforts are needed to address disparate cancer screening behaviors within this diverse population.

Do children and adults differ in survival from medulloblastoma? A study from the SEER registry.

Studies investigating whether adults have diminished survival from medulloblastoma (MB) compared with children have yielded conflicting results. We sought to determine in a population-based registry whether adults and children with MB differ in survival, and to examine whether dissimilar use of chemotherapy might contribute to any disparity. 1,226 MB subjects were identified using the Surveillance Epidemiology and End Results (SEER-9) registry (1973-2002) and survival analysis performed. MB was defined strictly to exclude non-cerebellar primitive neuro-ectodermal tumors. Patients were stratified by age at diagnosis: <3 years (infants), 3-17 years (children) and >or=18 years (adults). Because the SEER-9 registry lacks treatment data, a subset of 142 patients were identified using the San Francisco-Oakland SEER registry (1988-2003) and additional analyses performed. There was no significant difference in survival between children and adults with MB in either the SEER-9 (P = 0.17) or SFO (P = 0.89) cohorts but infants fared worse compared to both children (P < 0.01) and adults (P < 0.01). In the SFO sample, children and adults who received chemotherapy plus radiation therapy (XRT) did not differ in survival. Among patients treated with XRT alone, children showed increased survival (P = 0.04) compared with adults. Children and adults with MB do not differ with respect to overall survival, yet infants fare significantly worse. For children and adults with MB treated with both XRT and chemotherapy, we could not demonstrate a survival difference. Similar outcomes between adult and childhood MB may justify inclusion of adults in pediatric cooperative trials for MB.

Gender affects survival for medulloblastoma only in older children and adults: a study from the Surveillance Epidemiology and End Results Registry.

BACKGROUND: Males have a higher incidence of medulloblastoma (MB) than females, but the effect of gender on survival is unclear. Studies have yielded conflicting results, possibly due to small sample sizes or differences in how researchers defined MB. We aimed to determine the effect of gender on survival in MB using a large data set and strict criteria for defining MB. PROCEDURE: A sample of 1,226 subjects (763 males and 463 females) was identified from 1973 to 2002, using the Surveillance Epidemiology and End Results (SEER-9) registry. MB was strictly defined to exclude non-cerebellar embryonal tumors (primitive neuro-ectodermal tumors). Because children <3 years of age are known to have worse survival, patients were stratified by age <3 years at diagnosis (95 males, 82 females) and >3 years (668 males, 381 females). RESULTS: Overall, there was no significant difference in survival between males and females (log rank P = 0.22). However, among subjects >3 years, females had significantly greater survival than males (log rank P = 0.02). In children <3 years, there was a non-significant trend toward poorer survival in females (median survival: males 27 months, females 13 months; log rank P = 0.24). This interaction between age group and gender was statistically significant (P = 0.03). CONCLUSION: Females with MB have a survival advantage only in subjects >3 years. In children <3 years, females may even have poorer outcome. The effect of gender on survival and incidence in MB warrants additional biologic investigation, and may differ in very young children with MB.

Medulloblastoma incidence has not changed over time: a CBTRUS study.

Earlier studies have reported changes in the incidence of medulloblastoma (MB) but have conflicted, likely because of small sample size or misclassification of MB with primitive neuroectodermal tumor (PNET). The incidence of MB and PNET from 1985 to 2002 was determined from the Central Brain Tumor Registry of the United States, a large population-based cancer registry, using strict histologic and site codes. No statistically significant change in MB incidence was observed over the last 2 decades, but there was an increase in MB and PNET combined.