Laura Allen

Unmet Support Service Needs and Health-Related Quality of Life among Adolescents and Young Adults with Cancer: The AYA HOPE Study.

Introduction: Cancer for adolescents and young adults (AYA) differs from younger and older patients; AYA face medical challenges while navigating social and developmental transitions. Research suggests that these patients are under or inadequately served by current support services, which may affect health-related quality of life (HRQOL). Methods: We examined unmet service needs and HRQOL in the National Cancer Institute’s Adolescent and Young Adult Health Outcomes and Patient Experience (AYA HOPE) study, a population-based cohort (n = 484), age 15–39, diagnosed with cancer 6–14 months prior, in 2007–2009. Unmet service needs were psychosocial, physical, spiritual, and financial services where respondents endorsed that they needed, but did not receive, a listed service. Linear regression models tested associations between any or specific unmet service needs and HRQOL, adjusting for demographic, medical, and health insurance variables. Results: Over one-third of respondents reported at least one unmet service need. The most common were financial (16%), mental health (15%), and support group (14%) services. Adjusted models showed that having any unmet service need was associated with worse overall HRQOL, fatigue, physical, emotional, social, and school/work functioning, and mental health (p’s < 0.0001). Specific unmet services were related to particular outcomes [e.g., needing pain management was associated with worse overall HRQOL, physical and social functioning (p’s < 0.001)]. Needing mental health services had the strongest associations with worse HRQOL outcomes; needing physical/occupational therapy was most consistently associated with poorer functioning across domains. Discussion: Unmet service needs in AYAs recently diagnosed with cancer are associated with worse HRQOL. Research should examine developmentally appropriate, relevant practices to improve access to services demonstrated to adversely impact HRQOL, particularly physical therapy and mental health services.

Why do Asian-American women have lower rates of breast conserving surgery: results of a survey regarding physician perceptions.

BackgroundUS Asian women with early-stage breast cancer are more likely to receive a modified radical mastectomy (MRM) than White women, contrary to clinical recommendations regarding breast conserving treatment (BCT).MethodsWe surveyed physicians regarding treatment decision-making for early-stage breast cancer, particularly as it applies to Asian patients. Physicians were identified through the population-based Greater Bay Area Cancer Registry. Eighty (of 147) physicians completed a questionnaire on sociodemographics, professional training, clinical practices, and perspectives on the treatment decision-making processes.ResultsThe most important factors identified by physicians in the BCT/MRM decision were clinical in nature, including presence of multifocal disease (86% identified this as being an important factor for selecting MRM), tumor size (71% for MRM, 78% for BCT), cosmetic result (74% for BCT), and breast size (50% for MRM, 55% for BCT). The most important reasons cited for the Asian treatment patterns were patient attitudes toward not needing to preserve the breast (53%), smaller breast sizes (25%), and fear and cultural beliefs (12%).ConclusionThese survey results suggest that physicians perceive major roles of both clinical and cultural factors in the BCT/MRM decision, but cultural factors may be more relevant in explaining surgical treatment patterns among Asians.

Strategies for recruiting representative samples of Asian Americans for a population-based case–control study

Background Data are limited on effective methods for recruiting persons, especially from ethnically diverse populations, into population-based studies. The goal of this study was to evaluate the variation among and representativeness of controls identified using multiple methods for a population-based case–control study of breast cancer among Asian Americans, Native Hawaiians and Pacific Islanders (AANHPIs) in the San Francisco Bay Area. Methods We used a unique combination of targeted recruitment strategies, including address-based sampling, community-based methods, and internet-based and media-based approaches for recruiting controls, frequency matched on age and ethnicity to a population-based sample of cases. To characterise the participating controls, we compared the distribution of sociodemographic characteristics and cancer risk factors between recruitment sources using χ2 tests. To ensure that the controls we recruited were representative of the underlying at-risk population, we compared characteristics of the controls, by ethnicity and in aggregate, to data from the California Health Interview Survey (CHIS), and adjusted the relative mix of recruitment strategies throughout the study as needed to achieve representativeness. Results As expected, controls (n=483) recruited by any single method were not representative. However, when aggregated across methods, controls were largely representative of the underlying source population, as characterised by CHIS, with regard to the characteristics under study, including nativity, education, marital status and body mass index. Conclusions A multimode approach using targeted recruitment strategies is an effective and feasible alternative to using a single recruitment method in identifying a representative, diverse control sample for population-based studies.

Abstract IA30: Modeling of socioeconomic wellbeing, follow-up care communication, stress appraisal, coping, and physical functioning among Chinese and non-Hispanic white breast cancer survivors

Background: Minority and immigrant cancer survivors have poorer physical functioning than non-Hispanic Whites (NHWs) and US-born survivors. However, little research has taken a cultural perspective to understand whether there are different stress and coping processes among different cultural groups, which lead to different physical functioning outcomes. Chinese culture is oriented by collectivism, emphasizing interdependence, which induces different cancer concerns from NHWs9 concerns. First, Chinese survivors are more likely to express worry about the burden of their disease on their families due to cancer-associated threats (e.g., losing productivity and negating family wellbeing and economic security), whereas NHWs more often express concerns about the loss of independence. These concerns (perceived severity) about family and independence are likely heightened when survivors lack medical and social capital to obtain care in terms of socioeconomic wellbeing, consequently lowering their sense of control of the illness. Emotional stress is negatively related to physical health. This negative relationship is likely to be stronger among Chinese than NHWs because the former has poorer socioeconomic wellbeing plus feels guilty for burdening their families. Second, Chinese culture places value on physician authority over patient autonomy. Chinese survivors usually manifest their respect to physicians through compliance--less expression of their medical needs and requests of resolving their symptoms--consequently making their physical problems unresolved and becoming less satisfied with communication with physicians. Hence, it is likely that communication with physicians is particularly likely to affect health of Chinese cancer survivors. Very little research has examined whether socioeconomic wellbeing and follow-up care communication influence cancer survivors9 stress appraisals (i.e. perceived severity and control), coping, and physical functioning, and whether these relationships vary by cultural groups. Objectives: Guided by the transactional model of stress-coping and vulnerability model, we tested the hypothesis that the impact of socioeconomic wellbeing and follow-up care communication on physical functioning is mediated by stress appraisal and coping variables in both groups, and that this pathway is more robust for Chinese survivors compared with NHWs. Methods: We enrolled Chinese and NHW breast cancer survivors from California9s 2008-2011 cancer registry data. They were aged 21 and older, diagnosed with primary breast cancer at stage 0-III, had completed primary treatment for 1-5 years, and had no recurrence. A total of 436 survivors (220 Chinese and 216 NHWs) completed an hour-long cross-sectional survey assessment via telephone. We interviewed Chinese survivors in their preferred languages; 77% of them were interviewed in Mandarin or Cantonese. Self-reported physical functioning was measured by the short form of patient reported outcomes measurement information system (PROMIS). Independent variables including socioeconomic well-being, communication with follow-up care physicians, stress appraisal, and engagement and disengagement coping were assessed. Counts of patients9 self-reported side effects from breast cancer treatment and comorbid conditions were also assessed. Descriptive analysis was conducted to examine factors explaining the physical functioning outcome. Path analysis was run to test the hypothesis of mediation for each ethnic group. Standardized path coefficients were reported. Higher comparative fit index (CFI ≥.95) and lower root mean-square error of approximation (RMSEA Results: Chinese survivors, mainly low-acculturated, have lower physical functioning than NHW survivors after controlling for comorbidity, cancer stage, and time since diagnosis (p=.01). Chinese survivors also had poorer socioeconomic wellbeing, follow-up care communication, higher perceived severity, and lower perceived control over breast cancer care than NHWs (all p Conclusion: Our study provided evidence that socioeconomic wellbeing affects physical functioning across ethnic groups. The ability to afford care and having access to quality care is essential to physical wellbeing. The results also supported our hypothesis that the quality of communication with follow-up care physicians is more salient to Chinese survivors9 perceived control over breast cancer care, which directly explains their physical functioning. These findings are consistent with our prior qualitative findings that Chinese immigrants felt more insecure about their financial stability to afford care, perceived greater negative impact on their families9 wellbeing, and were less assertive to ask physicians to treat their symptoms than NHWs. These emotional and communication vulnerabilities, taken together with their lack of cultural and linguistic resources for accessing care, significantly weaken Chinese9s evaluation of control. Poor socioeconomic wellbeing and communication are likely to contribute to higher numbers of self-reported side effects and comorbidity, all of which explain individual variation in physical wellbeing. In short, the pathways we identified have gone beyond a conventional stress-coping model to explain ethnic differences in physical functioning. Indeed, they have advanced our understanding of survivorship care needs and issues among cancer survivors from different cultural backgrounds. Asian Americans are the fastest growing population in the US and their breast cancer incidence rates are steadily increasing. A culturally comprehensive mechanism to guide intervention approaches will be essential to effectively reduce health disparities experienced by this growing survivor population. Citation Format: Judy Huei-yu Wang, Rena J. Pasick, Scarlett Lin Gomez, Jeanne S. Mandelblatt, Roger L. Brown, Laura Allen, Yulia Chentsova, Ellen Huang, Marc D. Schwartz. Modeling of socioeconomic wellbeing, follow-up care communication, stress appraisal, coping, and physical functioning among Chinese and non-Hispanic white breast cancer survivors. [abstract]. In: Proceedings of the Seventh AACR Conference on The Science of Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; Nov 9-12, 2014; San Antonio, TX. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2015;24(10 Suppl):Abstract nr IA30.

Abstract B21: Associations of physical activity with physical functioning and emotional distress among non-Hispanic white and Chinese-American breast cancer survivors

Breast cancer is the most commonly diagnosed cancer and one of the leading causes of cancer deaths for Asian-American women. Asian-American breast cancer survivors often report higher rates of poor quality of life than Non-Hispanic White (NHW) survivors. While physical activities were found to improve breast cancer survivors9 health related quality of life (HRQOL), knowledge regarding their quality of life and physical activity behaviors among Asian women is limited. This study examined the association of self-reported physical activity levels with HRQOL outcomes (i.e., physical function and emotional distress) among a sample of Non-Hispanic White (NHW) and Chinese-American breast cancer survivors. We also examined whether the association was modified by high-acculturated Chinese-American (HCA) versus low-acculturated Chinese-American (LCA). We obtained breast cancer cases from California Cancer Registries and recruited women who were over age 21, diagnosed with breast cancer at stage 0-III, and had completed primary treatment within 1-5 years with no recurrence. Acculturation was defined by Chinese-American women9s English ability (high vs. low) and years of US residency (median=25 years). Cross-sectional survey data were collected from 381 breast cancer survivors (184 NHW, 68 HCA, and 129 LCA) via telephone. Physical activity was measured using the International Physical Activity Questionnaire (IPAQ) and physical functioning and emotional distress were measured using Patient Reported Outcomes Measurement Information System (PROMIS) items. GLM and multivariate logistic regression analysis was used to model relationships between physical activity levels and patient reported outcomes, controlling for covariates (e.g., body mass index and comorbidity). Results showed that NHW and acculturated Chinese survivors had higher physical functioning than low-acculturated Chinese survivors, although the three groups had no difference in emotional distress. For reported physical activity levels, 42% of NHWs reported high physical activity levels (>150 minutes/week of moderate intensity) compared to the two Chinese-American groups (25% HCA and 13% LCA). Regardless of race, those who reported high physical activity levels were more likely to have higher physical functioning (OR: 3.07, CI: 1.53, 6.17) and lower depression (OR: 0.48, CI: 0.25, 0.91) and anxiety (OR: 0.47, CI: 0.25, 0.90). Specifically, higher levels of physical activity were strongly associated with higher levels physical functioning among NHW and HCA survivors, but this association was less evident for LCA survivors. Moreover, Chinese breast cancer survivors, regardless of acculturation level, those who reported higher levels of physical activities were less likely to report emotional stress compared to NHW women. Overall, results extend upon the importance of promoting physical activity to improve HRQOL outcomes in breast cancer survivors. Differences by race and acculturation status also warrants further investigation in future studies designed to improve HRQOL outcomes in breast cancer survivors, especially in immigrant populations with different acculturation status. Citation Format: Bang Hyun Kim, Chiranjeev Dash, Scarlett Lin Gomez, Vanessa B. Sheppard, Laura Allen, Yiru Wang, Judy Huei-yu Wang. Associations of physical activity with physical functioning and emotional distress among non-Hispanic white and Chinese-American breast cancer survivors. [abstract]. In: Proceedings of the Twelfth Annual AACR International Conference on Frontiers in Cancer Prevention Research; 2013 Oct 27-30; National Harbor, MD. Philadelphia (PA): AACR; Can Prev Res 2013;6(11 Suppl): Abstract nr B21.

Overcoming Challenges in Recruitment of South Asians for Health Disparities Research in the USA

South Asians—individuals with origins in the countries of Bangladesh, Bhutan, India, Maldives, Nepal, Pakistan, Sri Lanka, and other regions of the subcontinent—are an understudied and at-risk racial/ethnic minority population for disproportionate burden of preventable diseases in the USA. Notwithstanding lack of research disaggregating Asian American subgroups, a key factor in this paucity of data is the lack of participation and engagement of community members in studies which examine distribution and determinants of adverse health outcomes. The purpose of this case study series is to elucidate distinct barriers in recruitment of South Asians in health disparities research within four diverse study designs. These illustrations are followed by a discussion of effective strategies and promising practices to increase and enhance the participation of community members in health-related studies in order to ultimately understand and address disparities among this rapidly growing cultural group in the US systematic collection of data which not only is representative of this understudied population but also elucidates contextual influences on community health and well-being and is pivotal to the reduction and elimination of preventable disparities among South Asians in the USA.