Marjorie Kagawa-Singer

Is there a menopausal syndrome? Menopausal status and symptoms across racial/ethnic groups.

In recent years, research on menopausal symptomalogy has focused on identifying symptom groupings experienced by women as they progress from premenopausal to postmenopausal status. However, most of these studies have been conducted among Caucasian women from western cultures. This leaves open the question of whether the findings from these studies can be extended to women of other racial/ethnic groups or cultures. Furthermore, many of the previous studies have been conducted on relatively small samples. This paper addresses the diversity of the menopause experience by comparing symptom reporting in a large cross-sectional survey of women aged 40-55 years among racial/ethnic groups of women in the United States (Caucasian, African-American, Chinese, Japanese, and Hispanic). Evaluation of the extent to which symptoms group together and consistently relate to menopausal status across these five samples provides evidence for or against a universal menopausal syndrome. The specific research questions addressed in this paper are: (1) How does the factor structure of symptoms among mid-aged women compare across racial/ethnic groups? (2) Is symptom reporting related to race/ethnicity or menopausal status? and (3) Does the relation between menopausal status and symptoms vary across racial/ethnic groups? Analyses are based on 14,906 women who participated in the multi-ethnic, multi-race, multi-site study of mid-aged women called the Study of Womens Health Across the Nation (SWAN). Study participants completed a 15-min telephone or in-person interview that contained questions on a variety of health-related topics. Items of interest for these analyses include symptoms, menstrual history (to assess menopausal status), health status, and sociodemographics. Factor analysis results showed that across all five racial/ethnic groups, two consistent factors emerged; one consisting of clearly menopausal symptoms -- hot flashes and night sweats -- and the other consisting of psychological and psychosomatic symptoms. Results of regression analyses showed racial/ethnic differences in symptom reporting, as well as differences by menopausal status. Controlling for age, education, health, and economic strain, Caucasian women reported significantly more psychosomatic symptoms than other racial/ethnic groups. African-American women reported significantly more vasomotor symptoms. Perimenopausal women, hormone users, and women who had a surgical menopause reported significantly more vasomotor symptoms. All of these groups, plus postmenopausal women, reported significantly more vasomotor symptoms than premenopausal women. The pattern of results argues against a universal menopausal syndrome consisting of a variety of vasomotor and psychological symptoms.

A strategy to reduce cross-cultural miscommunication and increase the likelihood of improving health outcomes.

Encounters between physicians and patients from different cultural backgrounds are becoming commonplace. Physicians strive to improve health outcomes and increase quality of life for every patient, yet these discordant encounters appear to be a significant factor, beyond socioeconomic barriers, in creating the unequal and avoidable excess burden of disease borne by members of ethnic minority populations in the United States. Most clinicians lack the information to understand how culture influences the clinical encounter and the skills to effectively bridge potential differences. New strategies are required to expand medical training to adequately address culturally discordant encounters among the physicians, their patients, and the families, for all three may have different concepts regarding the nature of the disease, expectations about treatment, and modes of appropriate communication beyond language. The authors provide an anthropological perspective of the fundamental relationship between culture and health, and outline systemic changes needed within the social and legal structures of the health care system to reduce the risk of cross-cultural miscommunication and increase the likelihood of improving health outcomes for all populations within the multicultural U.S. society. The authors define the strengths inherent within every culture, provide a guideline for the clinician to evaluate disease and illness within its cultural context, and outline the clinical skills required to negotiate among potential differences to reach mutually desired goals for care. Last, they indicate the structural changes required in the health care setting to enable and support such practice.

End-of-life decision making: a qualitative study of elderly individuals.

OBJECTIVE: To identify the desired features of end-of-life medical decision making from the perspective of elderly individuals.DESIGN: Qualitative study using in-depth interviews and analysis from a phenomenologic perspective.SETTING: A senior center and a multilevel retirement community in Los Angeles.PARTICIPANTS: Twenty-one elderly informants (mean age 83 years) representing a spectrum of functional status and prior experiences with end-of-life decision making.MAIN RESULTS: Informants were concerned primarily with the outcomes of serious illness rather than the medical interventions that might be used, and defined treatments as desirable to the extent they could return the patient to his or her valued life activities. Advanced age was a relevant consideration in decision making, guided by concerns about personal losses and the meaning of having lived a “full life.” Decisionmaking authority was granted both to physicians (for their technical expertise) and family members (for their concern for the patient’s interests), and shifted from physician to family as the patient’s prognosis for functional recovery became grim. Expressions of care, both by patients and family members, were often important contributors to end-of-life treatment decisions.CONCLUSIONS: These findings suggest that advance directives and physician-patient discussions that focus on acceptable health states and valued life activities may be better suited to patients’ end-of-life care goals than those that focus on specific medical interventions, such as cardiopulmonary resuscitation. We propose a model of collaborative surrogate decision making by families and physicians that encourages physicians to assume responsibility for recommending treatment plans, including the provision or withholding of specific life-sustaining treatments, when such recommendations are consistent with patients’ and families’ goals for care.

Cancer, Culture, and Health Disparities: Time to Chart a New Course?

Little progress has been made over the last 40 years to eliminate the racial/ethnic differences in incidence, morbidity, avoidable suffering, and mortality from cancer that result from factors beyond genetic differences. More effective strategies to promote equity in access and quality care are urgently needed because the changing demographics of the United States portend that this disparity will not only persist but significantly increase. Such suffering is avoidable. The authors posit that culture is a prime factor in the persistence of health disparities. However, this concept of culture is still poorly understood, inconsistently defined, and ineffectively used in practice and research. The role of culture in the causal pathway of disparities and the potential impact of culturally competent cancer care on improving cancer outcomes in ethnic minorities has, thus, been underestimated. In this article, the authors provide a comprehensive definition of culture and demonstrate how it can be used at each stage of the cancer care continuum to help reduce the unequal burden of cancer. The authors conclude with suggestions for clinical practice to eliminate the disconnection between evidence‐based, quality, cancer care and its delivery to diverse population groups. CA Cancer J Clin 2010;60:12–39.

Redefining health: Living with cancer

The patients presented in this paper were being treated for cancer. None denied the diagnosis, and all were adhering to the medical regimen. Yet these patients also said that they were healthy in the face of the implications of their disease and the physical toll imposed by the treatments. The definition of health currently used by the American health care system is too restrictive to encompass the perception voiced by these individuals. This paper proposes to broaden the concept of health to help provide a legitimate place in society for individuals with chronic, life-threatening illnesses. A theoretical framework is proposed which might explain how these patients could still see themselves as healthy despite their disease. The core concept of health in this model is a sense of self-integrity, and the construct of health has two dimensions, Physical Status and Social Function. Individuals with chronic, life-threatening diseases like cancer use both of these dimensions simultaneously in order to negotiate and reestablish a sense of self-integrity based on their continued social functioning even in light of their acknowledged physical condition. Implications for restructuring our thinking about health, disease, and the mechanisms used to cope with cancer are outlined in order to develop a more realistic definition of health which is contextually based in the lives of the individuals with the disease. The criteria for assessment would not be biologic integrity alone, but a complex compromise between personal needs, social obligations, and physical abilities.

Predictors of psychological distress among southeast Asian refugees

This paper analyzed data from one of the first needs assessment projects on a representative non-clinical population of Southeast Asian refugees in the United States in order to test two hypotheses: (1) whether or not premigration experiences still have an effect on psychological distress beyond the initial resettlement period and (2) whether or not interethnic group differences existed in the predictors of psychological distress between three Southeast Asian refugee groups, the Vietnamese, Cambodians and Lao. The results of the analysis of 2180 subjects supported both hypotheses. Regardless of ethnicity and the number of years in the U.S., premigration trauma events and refugee camp experiences were significant predictors of psychological distress even 5 years or more after migration and significant group differences in the types of postmigration distress predictors were also found. Acculturation concerns for the Vietnamese and Lao were influenced by both premigration and postmigration variables. In contrast, the primary concerns of the Cambodians were still related to premigration issues. The results also indicated that Vietnamese and Lao women were more likely to experience distress than their male counterparts, but no gender differences emerged for the Cambodians. Age predicted distress for Vietnamese and Cambodians, but not Lao. Similar to previous findings in the literature, Cambodians reported the highest levels of distress, followed by Lao and then Vietnamese. Interpretations of these results for this community sample are proposed.

Impact of Breast Cancer on Asian American and Anglo American Women

This pilot study constitutes the first exploration ofthe impact of breast cancer on Asian American women.Three hypotheses guided this study: (1) Asian Americanwomen would choose breast conserving therapy andbreast reconstruction at a lower rate than the AngloAmerican women due to cultural differences in bodyimage, (2) Asian American women with breast cancerwould express psychological distress somatically andAnglo American women would express distress emotionally, and acculturation levels of the AsianAmerican women would modify the expressions ofdistress such that women with high acculturation willexpress distress more emotionally and lessacculturated women would express distress moresomatically, and (3) Asian American women would seekassistance for psychosocial problems at asignificantly lower rate than Anglo women. Ethnicity,age, and levels of acculturation were found to besignificant variables that had to be consideredsimultaneously. The three hypotheses were onlypartially supported: (1) Asian American women chosebreast conserving therapy and adjuvant therapy at asignificantly lower rate than the Anglo Americanwomen, (2) Contrary to the hypothesis, somatization didnot appear to be a dominant form of symptompresentation for Asian American women regardless oflevel of acculturation, and (3) Asian American womensought professional assistance for psychosocialproblems at a significantly lower rate than Anglowomen. Asian American women reported using differentmodes of help-seeking behavior for emotional concernsand receiving different sources of social support thanthe Anglo American women. Cultural interpretations ofthe findings are offered to explain the differences inthe physical, emotional, and social responses to thebreast cancer experience of Asian American womencompared with the Anglo Americans, and notably betweenthe Chinese- and Japanese Americans as well. Thefindings of this study warrant more refinedexploration in order to improve the medical,psychological and social outcomes for Asian Americanwomen with breast cancer.

Attitudes toward menopause and aging across ethnic/racial groups.

OBJECTIVE Attitudes have a potential role to play in the experience of menopause. The objective of this study was to examine the degree to which attitudes toward menopause and aging vary across ethnic groups and menopausal status (ie, premenopausal through postmenopausal). METHODS More than 16,000 women were interviewed by telephone as part of the Study of Womens Health Across the Nation. They represented five ethnic/racial groups (African American, white, Chinese American, Japanese American, and Hispanic) from seven geographical sites (Boston, MA; Pittsburgh, PA; Chicago, IL; Michigan; New Jersey; and northern and southern California). RESULTS African American women were significantly more positive in attitude. The least positive groups were the less acculturated Chinese American and Japanese American women. Menopausal status was not a consistent predictor of attitude across ethnic groups. CONCLUSIONS In general, womens attitudes toward menopause range from neutral to positive. Ethnic groups within the United States vary slightly, but reliably, in their attitudes toward menopause and aging. Factors other than those directly associated with menopausal status seem to play a role in attitude.

Acculturation of Attitudes Toward End-of-life Care: A Cross-cultural Survey of Japanese Americans and Japanese

OBJECTIVE: Cross-cultural ethical conflicts are common. However, little is known about how and to what extent acculturation changes attitudes toward end-of-life care and advance care planning. We compared attitudes toward end-of-life care among Japanese Americans and Japanese in Japan.DESIGN: Self-administered questionnaire in English and Japanese.SETTING AND PARTICIPANTS: Community-based samples of Japanese Americans in Los Angeles and Japanese in Nagoya, Japan: 539 English-speaking Japanese Americans (EJA), 340 Japanese-speaking Japanese Americans (JJA), and 304 Japanese living in Japan (JJ).MEASUREMENTS AND MAIN RESULTS: Few subjects (6% to 11%) had discussed end-of-life issues with physicians, while many (EJA, 40%; JJA, 55%; JJ, 54%) desired to do so. Most preferred group surrogate decision making (EJA, 75%; JJA, 57%; JJ, 69%). After adjustment for demographics and health status, desire for informing the patient of a terminal prognosis using words increased significantly with acculturation (EJA, odds ratio [OR] 8.85; 95% confidence interval, [95% CI] 5.4 to 14.3; JJA, OR 2.8; 95% CI 1.8 to 4.4; JJ, OR 1.0). EJA had more-positive attitudes toward forgoing care, advance care planning, and autonomous decision making.CONCLUSION: Preference for disclosure, willingness to forgo care, and views of advance care planning shift toward western values as Japanese Americans acculturate. However, the desire for group decision making is preserved. Recognition of the variability and acculturation gradient of end-of-life attitudes among Japanese Americans may facilitate decision making and minimize conflicts. Group decision making should be an option for Japanese Americans.

Involving Minority and Underrepresented Women in Clinical Trials: The National Centers of Excellence in Women's Health

Recent attention to reducing health disparities among population groups has focused on the need to include in clinical studies, especially clinical trials, participants who represent the diversity of the populations to which study results will be applied. While scientists generally applaud the goal of broadening the characteristics of participants in clinical trials, they are faced with multiple challenges as they seek to include historically underrepresented populations in their research. This article examines the historical and sociocultural context of participation by underrepresented groups, especially women and minorities, in clinical trials, identifies major barriers and challenges facing researchers, and suggests strategies for meeting these challenges. The article draws upon the experiences of the investigators affiliated with the National Centers of Excellence of Womens Health (CoEs).