Quality of life research in Hawaii's cancer survivors.
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Breast Neoplasms↗
Biomedical subjects
C C Gotay
Publications and source records attributed to C C Gotay.
Perceptions of informed consent by participants in a prostate cancer prevention study.
This study examined perceptions of the informed consent process in healthy men participating in a cancer prevention clinical trial. Specifically, we examined influence of the consent form on participation and understanding, adequacy of the consent process in preparing participants for trial experiences, and perceived needs for additional follow-up strategies. Participants (n = 69) enrolled in the Prostate Cancer Prevention Trial at our institution completed mailed questionnaires approximately 2 years after joining the study. Results indicated that many participants had no remembrance of the consent process, and only a minority reported that the consent process had helped in decision-making about study participation. Eleven men (16%) reported experiencing unexpected study side effects, most related to sexual functioning. Most men (78%) did not feel that they currently needed more information about the study, although virtually all of the respondents wanted to learn the study results. Almost one-third wished to interact with other Prostate Cancer Prevention Trial participants. Results indicate that a signed consent form and initial counseling for a prevention study does not ensure that participants feel they are adequately informed about the study or the side effects. Providing and reinforcing information on a regular and continuous basis is especially important in studies where compliance is required over a period of years.
Aged↗
Why some cancer patients choose complementary and alternative medicine instead of conventional treatment.
OBJECTIVES: We examined cancer patients' reasons for declining all or part of recommended cancer treatment and choosing complementary and alternative medicine (CAM). STUDY DESIGN: This was a qualitative interview study. POPULATION: Fourteen cancer survivors who reported having declined all or part of the recommended conventional treatment (surgery, chemotherapy, or radiation) were included. The participants were a subset from a multi-ethnic (Asian, Native Hawaiian, and white) group of 143 adults diagnosed with cancer in 1995 or 1996 who were recruited through a population-based tumor registry and interviewed about CAM. OUTCOMES MEASURED: We performed semistructured interviews regarding experience with conventional cancer treatment and providers, use of CAM, and beliefs about disease. RESULTS: All participants used 3 or more types of CAM, most commonly herbal or nutritional supplements. Across the board, participants stated that their reason for declining conventional treatment was to avoid damage or harm to the body. The majority of participants also felt that conventional treatment would not make a difference in disease outcome, and some but not all participants perceived an unsatisfactory or alienating relationship with health care providers. Some participants reported that their discovery of CAM contributed to their decision to decline conventional treatment, and participants generally perceived CAM as an effective and less harmful alternative to conventional treatment. CONCLUSIONS: Cancer patients may benefit from interventions (eg, patient education, improvements in physician-patient communication, and psychologic therapy) to facilitate treatment decision making through increased understanding of conventional and CAM treatments and to identify barriers to treatment for individual patients.
Complementary Therapies↗
Behavioral science research in the cooperative group setting: the Southwest Oncology Group experience.
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Breast Neoplasms↗
Health food store recommendations for breast cancer patients.
CONTEXT: Despite cancer patients' widespread and growing use of complementary and alternative medicine, minimal attention has been paid to the role of health food stores in the "supply side" of this phenomenon. OBJECTIVE: To gain a better understanding of health food store personnel's recommendations for breast cancer patient care. DESIGN: Researcher posing as the daughter of a breast cancer patient and surveying health food store personnel on their product recommendations for cancer care. SETTING: Oahu, Hawaii, summer 1998. PARTICIPANTS: All health food stores (N = 40) offering products for cancer patients. MAIN OUTCOME MEASURES: Recommended products and services, proposed mechanism of action, and costs. RESULTS: Store personnel readily provided information and product recommendations, with shark cartilage being the most frequent. Suggested mechanisms of action drew on traditional healing, scientific, and pseudoscientific rationales. Costs for recommended dosages varied multifold across stores and brands. CONCLUSIONS: Retailers supplying supplements can play an important role in the network of "authorities" for patients with breast and other cancers, as they readily provide advice and recommend products. The reasons why patients seek health food store remedies are useful in developing approaches to patient education. Physicians and other providers are in a key position to assist cancer patients in making informed choices when considering health store products.
Breast Neoplasms↗
Impact of a culturally appropriate intervention on breast and cervical screening among native Hawaiian women.
BACKGROUND: Native Hawaiian women have the highest breast and cervical cancer mortality rates and lowest screening rates in Hawai'i. This paper summarizes impacts of a breast and cervical cancer screening intervention spearheaded by a Native Hawaiian community. METHODS: Six hundred seventy-eight randomly selected Native Hawaiian women completed two telephone surveys assessing their cancer screening behaviors: 318 women from a community that implemented an intervention, known as a Kokua Group, to provide culturally tailored education and support in a group setting and 360 women from communities without this intervention. The surveys were conducted before intervention implementation and 3 years later, 4 to 5 months after the last intervention session. RESULTS: At posttest, intervention community women reported positive changes in 4 of 12 screening activities (P < or = 0.05), while no changes were found among controls. Some women in both communities had heard about and/or participated in Kokua Groups. Hierarchical logistic regression showed that controlling for community, demographics, and pretest scores, Kokua Group knowledge or participation was a significant predictor (P < 0.05) of 9 of 12 screening-related behaviors. CONCLUSIONS: Positive changes in screening activities among women aware of the intervention support the importance of information diffusion by community consumers. Diffusion may occur beyond the boundaries of the community as defined.
Adult↗
Ethnic differences in complementary and alternative medicine use among cancer patients.
OBJECTIVES: This study estimated the prevalence of complementary and alternative medicine (CAM) use and its relation to quality of life (QOL) among cancer patients from diverse ethnic backgrounds. Given the ethnically diverse population in Hawaii, we hypothesized that CAM use may be related to the ancestry and the cultural heritage of cancer patients. DESIGN AND SETTING: Participants for this mail survey were identified through the Hawaii Tumor Registry, a state-wide population-based cancer registry. SUBJECTS: Patients with invasive cancer diagnosed 1995-1996. Of the 2,452 questionnaires received, 1,168 (47.6%) were returned. OUTCOME MEASURES: Prevalence of CAM use and QOL measures. RESULTS: One in four respondents reported at least one CAM therapy since cancer diagnosis. CAM use was highest among Filipino and Caucasian patients, intermediate for Native Hawaiians and Chinese, and significantly lower among Japanese. Some ethnic preferences for CAM followed ethnic folk medicine traditions, e.g., herbal medicines by Chinese, Hawaiian healing by Native Hawaiians, and religious healing or prayer by Filipinos. CAM users reported lower emotional functioning scores, higher symptom scores, and more financial difficulties than nonusers. CONCLUSIONS: This study detected ethnic differences in CAM use, in particular a low use among Japanese patients, and supports the importance of cultural factors in determining the frequency and type of CAM therapies chosen. Consideration of patients' cultural heritage may facilitate communication between physicians and patients about CAM with the goal to achieve optimal cancer care.
Adolescent↗
Use of complementary and alternative medicine in Hawaii cancer patients.
This research investigated complementary and alternative medicine (CAM) use by Hawai'i cancer patients. Thirty-six percent of patients used CAM, most commonly religious/spiritual therapy and herbal treatments. CAM use was linked with younger age, female gender, Catholic religion, and more education. More research is needed to inform decision-making.
Adolescent↗
Use of complementary and alternative medicine in Hawaii cancer patients.
This research investigated complementary and alternative medicine (CAM) use by Hawaii cancer patients. Thirty-six percent of patients used CAM, most commonly religious/spiritual therapy and herbal treatments. CAM use was linked with younger age, female gender, Catholic religion, and more education. More research is needed to inform decision-making.
Aged↗
Quality of life in long-term survivors of adult-onset cancers.
The long-term survival of cancer patients has risen dramatically during the last few decades, yet little is known about the quality of life experienced by these survivors. This paper reviews research on the quality of life in long-term cancer survivors to identify quality-of-life concerns in this population, to provide a critical evaluation of the literature, and to suggest areas for future research. Searches of computerized literature databases were conducted to identify all studies of quality of life in cancer survivors that were published in English language journals during the period from January 1, 1980, through February 12, 1998, and that were based on responses from individuals who have survived 5 or more years after the diagnosis of adult-onset cancers. Thirty-four papers were identified. Most studies utilized self-report questionnaires to measure quality of life. Although methodologies and cancer patient populations varied greatly, most studies showed that many survivors continue to experience negative effects of cancer and/or treatment on their daily lives well beyond the completion of therapy. Sexual functioning and/or satisfaction and psychological functioning were found to be concerns for many survivors. Several reports documented positive coping strategies and enhanced quality of life in long-term cancer survivors, supporting the need to measure positive aspects of quality of life as well as problems in this population. Study designs that more accurately measure quality of life among survivors of cancer by adjusting for the effects of aging and long-term therapy and the impact of second cancers should be utilized. Additional data are needed to understand the needs of long-term survivors, especially of those in groups underrepresented in published quality-of-life studies, and to determine what kinds of support survivors want.
Adult↗
Providing psycho-social support by telephone: what is its potential in cancer patients?
This paper provides an overview of the use of supportive telephone interventions in cancer patients. The small number of studies that have been reported to date have demonstrated that such approaches are feasible and well accepted. Current telephone counselling programmes for cancer patients have utilized both one-to-one and group approaches. Given the promise of telephone interventions to provide assistance to patients who may not otherwise receive psycho-social care because of factors such as geographical isolation, physical limitations, or lack of comfort with face-to-face approaches, further development and evaluation of programmes in this area is critically needed. We identify priorities for future research, including determining the most effective ways to deliver telephone interventions, identifying patient groups in which they are most successful, and evaluating cost-effectiveness.
Counseling↗
Physicians' and medical students' perspectives on patients' quality of life.
PURPOSE: To compare medical students' and oncologists' perspectives about patient-related quality of life (QOL). METHOD: In 1996, the authors compared the questionnaire responses of 65 oncologists and 105 medical students in the state of Hawai'i. RESULTS: Participants returned 146 usable questionnaires (response rates: 69% of oncologists and 97% of students). Both groups saw pain and suffering as central to QOL, while medical students also valued autonomy. Both groups indicated that QOL was at least as important as survival in treatment decision making. Students were significantly more likely to emphasize the importance of QOL over survival. Students strongly preferred physician interviews to assess QOL. Most physicians reported assessing QOL in every patient, but only one in ten had used a QOL assessment questionnaire. CONCLUSION: Both students and oncologists expressed considerable interest in QOL and virtually all regarded it as an important part of care. There were more similarities than differences in responses. Future educational programs in both medical school and continuing education should build on these positive attitudes.
Adult↗
Use of quality-of-life outcome assessments in current cancer clinical trials.
During the past decade, the importance of integrating quality of life with other indicators of efficacy in cancer clinical trials has been emphasized. This article reviews quality-of-life assessment in clinical trial reports. All empirical studies using patient ratings published in the Journal of Clinical Oncology from 1992 to 1996 were identified. Of these, 59 articles (4%) included quality-of-life assessment, most frequently measured by self-report questionnaires. Most articles reported clinical trials of symptom management or treatment. Future research needs to specify relationships between quality of life, toxicity, and survival. Continued development of this field requires more frequent inclusion of quality of life in clinical studies.
Clinical Trials as Topic↗
Participatory research in a Native Hawaiian community. The Wai'anae Cancer Research Project.
BACKGROUND: Community participation was a key component of a cancer control research project in a Native Hawaiian community. This project tested the effectiveness of a culturally appropriate intervention as a means of increasing breast and cervical cancer screening practices among Native Hawaiian women on the Wai'anae Coast of the island of O'ahu. METHODS: The Wai'anae Cancer Research project was community driven, with Native Hawaiian community representatives involved in all phases of the project, from grant proposal development to data interpretation. A community health center administered the grant award from the National Cancer Institute. The policymaking steering committee included community representatives, health professionals, and researchers to balance community and scientific quality standards. A factor in the project's success was continuous involvement over 7 years by a core of community representatives and professional staff. RESULTS: More than 500 women participated in the intervention, and outcome measures indicated that there was a community wide impact on cancer-related knowledge, attitudes, and behaviors. Important contributions of the project also included direct economic benefits, improvements in health services and systems, increased research capabilities, and dissemination of findings to other communities and researchers. CONCLUSION: Community participation in all phases of the research was essential in generating community acceptance and resulted in an innovative and effective intervention. This participatory research project has left the community richer in knowledge, skills, experience, confidence, and resources. These qualities provide a strong foundation for building future programs and research.
Breast Neoplasms↗
Trial-related quality of life: using quality-of-life assessment to distinguish among cancer therapies.
Issues in selecting quality-of-life (QOL) measures that are best suited to assessing differences among treatments in cancer clinical trials, as well as challenges to interpreting QOL outcome data, are discussed. When used in the context of randomized trials of cancer therapies, QOL assessments must provide an answer to the question, "Did the treatments differentially affect patient well-being?" In order to detect differences in treatment efficacy against a background of great similarity, the broad concept of QOL needs to be refined to reflect "trial-related QOL." In many cases, this will entail emphasis on actual patient experience of symptoms and functional changes, as opposed to emphasis solely on evaluation and satisfaction. A model is proposed to identify cognitive, emotional, and sociocultural factors that influence a patient's QOL evaluation and that need to be considered in understanding the meaning of QOL data.
Aged↗
Barriers to mammography in a low income, multiethnic clinic population.
Breast cancer-related knowledge, attitudes, behaviors and barriers to obtaining a mammogram were assessed in women attending a primary care clinic serving a low-income minority population. Although most women believed in the value of mammograms, fewer than one in six was compliant with guidelines, and there were considerable deficits in knowledge about breast cancer risk. Ethnic and age differences in responses have implications for health program planning.
Adult↗
Male-female differences in the impact of cancer therapy.
Sex has been shown to be a significant predictor of cancer survival, with females living longer than males. This survival differential could occur because women benefit more than men from cancer treatments. This article reports the results of a study of the adequacy of the current clinical trials literature to examine sex differences in response to cancer therapy. All phase III (randomized) trials of cancers in non-sex-specific sites published between 1988 and 1990 were identified in three cancer-specific and four general medical journals. Of 55 studies that investigated outcomes by sex, 33% reported differences. Future studies should include adequate numbers of male and female participants, where appropriate, to allow generalization of study findings; routine reporting of the sex composition of the study sample in clinical trials reports; and routine analysis of the effects of sex on prognosis and responses to specific treatments.
Clinical Trials, Phase III as Topic↗
Quality-of-life assessment in cancer treatment protocols: research issues in protocol development.
BACKGROUND: Interest in incorporating quality of life as an end point in clinical studies of cancer treatment has intensified in recent years. PURPOSE: We provide practical suggestions that will assist investigators considering including quality-of-life assessment in phase III therapeutic trials. METHODS: We discuss issues important in study planning, including quality-of-life definition, priority studies for quality-of-life assessment, eligibility requirements, and design. CONCLUSIONS: Many of the problems that quality-of-life studies have encountered, from protocol approval to data analysis, could be addressed and alleviated during protocol development. This discussion is intended to assist and stimulate investigators conducting research in this area.
Clinical Protocols↗