Search PubMed⌕ Search

Biomedical subjects

Carolyn C Gotay

Publications and source records attributed to Carolyn C Gotay.

15 recordsLinked to original sources
PubMed2006

Cancer outcomes measurement: Through the lens of the Medical Outcomes Trust framework.

BACKGROUND: In 2001, the U.S. National Cancer Institute established the Cancer Outcomes Measurement Working Group (COMWG) to evaluate and advance the state of the science in patient-reported outcome (PRO) measurement, with a focus on health-related quality of life (HRQOL). To guide its work, the COMWG adopted the revised Medical Outcomes Trust (MOT) attributes and review criteria for evaluating health status and quality-of-life instruments. OBJECTIVE: With the MOT attributes providing the organizing principle, this paper summarizes and draws inferences from key COMWG findings about the methodological soundness of HRQOL assessment in cancer and steps required to move the field forward. RESULTS AND CONCLUSIONS: Across a range of cancer research applications, especially clinical trials, a variety of generic, general cancer, and cancer site-specific measures of HRQOL have demonstrated adequate reliability, validity, responsiveness, feasibility, and cultural and language adaptation. Methodological challenges remain in the interpretability of HRQOL measures, though substantial progress has been made in defining a "minimum important difference" in scale scores. Much work remains in forging a stronger link between the conceptual model and measurement model in HRQOL instrumentation. Progress along all MOT attributes will likely accelerate with the growing application of modern psychometrics, particularly item response theory modeling, which provides the underpinnings for item banking and computer-adaptive assessment of HRQOL. Future research should emphasize prospectively designed studies to evaluate PRO measures within the MOT framework and in-depth investigations of the role of PRO measures in cancer decision making at all levels.

Endpoint Determination↗
PubMed2006

Modeling quality of life in cancer patients as a unidimensional construct.

Quality of life (QoL) in cancer patients has almost always been assessed as a multidimensional construct with subdomains including physical, emotional, social, cognitive, global, and specific symptoms. The assumed existence of multiple, and sometimes orthogonal, subdomains has prevented QoL from being defined consistently. Using an item response theory approach, this study examined the feasibility of modeling QoL as a unidimensional construct. The study sample consisted of 366 cancer patients who each responded to three QoL questionnaires: the EORTC QLQ-C30, the COOP/ WONCA, and the HI-QOL. The items from these questionnaires were pooled and examined for the information each conveyed with respect to a unidimensional QoL construct. Twenty-two items were found to perform well, suggesting the possibility of modeling QoL as a unidimensional construct. Unidimensional QoL appears to be defined by items spanning the major subdomains: global, social, emotional, physical, role, fatigue, and the ability to engage in past activities. The cognitive subdomain did not fit the unidimensional measure.

Aged↗
PubMed2006

Patterns of childhood cancer in Hawai'i between 1975 and 2000.

This study investigated the 25-year incidence of childhood cancer in Hawai'i, including sex, age, and ethnic differences and time trends. Leukemia was the most common diagnosis. Japanese in Hawai'i have lower pediatric cancer rates than for the United States. Previous trends toward increasing ethnic disparities in incidence rates were not found. Growing numbers of survivors imply the need for increased follow-up care.

Adolescent↗
PubMed2005

Reflections on findings of the Cancer Outcomes Measurement Working Group: moving to the next phase.

The Cancer Outcomes Measurement Working Group (COMWG) was a National Cancer Institute working group of 35 experts convened to examine the state of the science and identify future research priorities for outcomes assessment in cancer. The COMWG focused on three outcomes (health-related quality of life [HRQOL]), patient needs and satisfaction, and economic burden) in four cancers (breast, colorectal, lung, and prostate) across the continuum of care (prevention and screening, treatment, survivorship, and end of life). The majority of the research to date has focused on HRQOL assessment, which has been shown to be feasible in a research context, using questionnaires that meet established criteria for reliability and validity. The quality and quantity of HRQOL research has increased markedly in recent years, and additional methodological developments--particularly the application of item response theory to improve precision, efficiency, and comparability in measurement--hold considerable promise. Research is needed to develop and test predictive models of HRQOL and to establish the added value of including HRQOL assessment in clinical trials.

Cost of Illness↗
PubMed2005

Ethnic differential item functioning in the assessment of quality of life in cancer patients.

BACKGROUND: Past research has shown that Filipino cancer patients report lower levels of quality of life (QoL) than other ethnic groups. One possible explanation for this is that Filipinos do not define QoL in the same manner as others, resulting in bias in their assessments. Hence, Filipinos would not necessarily have lower QoL. METHODS: Item response theory methods were used to assess differential item functioning (DIF) in the quality of life (measured by the EORTC QLQ-C30) of cancer patients across four ethnic groups (Caucasian, Filipino, Hawaiian, and Japanese). The sample consisted of 359 cancer patients. RESULTS: Results showed the presence of DIF on several items, indicating ethnic differences in the assessment of quality of life. Relative to the Caucasian and Japanese groups, items related to physical functioning, cognitive functioning, social functioning, nausea and vomiting, and financial difficulties exhibited DIF for Filipinos. On these items Filipinos exhibited either higher or lower QoL scores, even though their overall QoL was the same. CONCLUSION: This evidence may explain why Filipinos have previously been found to have lower overall QoL. Although Filipinos score lower on QoL than other groups, this may not reflect lower QoL, but rather differences in how QoL is defined. The presence of DIF did not appear, however, to alter the psychometric properties of the QLQ-C30.

Aged↗
PubMed2005

Behavior and cancer prevention.

This paper reviews research on the effects of behavioral risk factors on cancer incidence, as well as behavioral interventions for cancer prevention. Risk factors discussed here--tobacco use, diet, physical activity, and obesity/energy balance--are all linked with cancer etiology, and effective behavioral interventions have been developed in all of these areas. The most effective interventions appear to incorporate various components; for example, including individual as well as family activities, and involving multiple community organizations in behavior-changing activities. Behavioral theories have guided the design of these interventions, providing support that certain influences on behavior, such as self-efficacy, problem-solving skills, and social support, are important regardless of the specific behavioral target. As illustrated by the recent lowered lung cancer incidence and mortality rates for men and women, behavior change is possible and effective in cancer prevention. Clinical guidelines have been established for behavioral aspects of treatments for smoking cessation, dietary guideline compliance, physical activity, and obesity reduction, and new tools for dissemination of effective intervention materials will be helpful in increasing their use. Documenting the cost-effectiveness of behavioral interventions, using new technology interventions, and building on translational research to tailor interventions to individuals offer considerable promise for the future.

Cost-Benefit Analysis↗
PubMed2005

Testing a culturally appropriate, theory-based intervention to improve colorectal cancer screening among Native Hawaiians.

BACKGROUND: We tested an intervention based on social learning theory (SLT) to improve colorectal cancer (CRC) screening among Native Hawaiians, a group with low CRC screening rates. METHOD: Sixteen Hawaiian civic clubs agreed to randomization. Eight control clubs received a culturally targeted presentation, a free Fecal Occult Blood Test (FOBT), and a reminder call. Eight experimental clubs also received culturally targeted education and free testing; but, in line with SLT, education was delivered by a Native Hawaiian physician and Native Hawaiian CRC survivor, and members received an FOBT demo, were challenged to involve a family member in screening, and were telephoned multiple times to address change-related emotions and barriers. RESULTS: One hundred twenty-one members age 50 and older from 16 clubs participated. At the club level, screening rates were modestly increased in four experimental clubs and six control clubs. Surprisingly, 64% of participants reported being up to date with CRC screening at baseline. Only 13 individuals (five in experimental arm and eight in the control arm) were screened for the first time through this intervention, increasing the percent screened from 59% to 67% in the experimental group and from 69% to 85% in the control group. Although individuals in the experimental arm were more likely to rate the intervention as culturally appropriate, both arms realized similar and significant gains in CRC knowledge, attitudes, intent, and self-efficacy. CONCLUSIONS: For Native Hawaiian individuals belonging to a network of civic clubs, an intervention based on SLT delivered by a Native Hawaiian physician and CRC survivor was less effective at further increasing compliance than was a culturally targeted educational session delivered by a non-Hawaiian nurse. That CRC screening compliance was high prior to our intervention suggests that we targeted a very health conscious segment of the Native Hawaiian population. Future work should focus on underserved segments of this indigenous group.

Aged↗
PubMed2005

Breast cancer treatment among women of different ethnicity in Hawaii.

BACKGROUND: An analysis of breast cancer survival for Hawaii's multiethnic women in the 1970s and 1980s showed that Hawaiian and Filipino women experienced a worse survival than their Caucasian and Japanese counterparts even after controlling for stage at diagnosis. We conducted this study to test for ethnic differences in treatment compliance with established guidelines while adjusting for stage at diagnosis and other disease characteristics. METHODS: A total of 406 newly diagnosed breast cancer patients identified through the Hawaii Tumor Registry were available for this project. Two hundred fifty-nine patients of the sample were from Hawaii's predominant fee-for-service multiple private office/community hospital setting and 147 patients were members of a Health Maintenance Organization (HMO). The primary measures assessed were treatment received, ethnicity, age at diagnosis, cancer stage, hormone receptor status, comorbidity, and treatment toxicities. Physician's Data Query (PDQ) guidelines were used as the standard of care. We examined whether there were ethnic-related differences in compliance with PDQ treatment guidelines according to stage at diagnosis. RESULTS: Overall, 25 percent of the sample did not receive treatment that was specifically recommended by PDQ guidelines and 7 percent received treatment that was not recommended by PDQ for the patients' stage of disease. There were no statistically significant ethnic-related differences in compliance with PDQ guidelines. Although not statistically significant, Caucasians and Japanese were less likely than other groups to receive axillary lymph node sampling/dissection and Chinese were more likely than other groups to receive chemotherapy when it was not specifically recommended by the PDQ. There was no difference in adherence to PDQ guidelines between the sample treated in a fee-for-service setting and the sample treated by the HMO. Hawaiians and Chinese experienced lower levels of Grade 3 and 4 chemotherapy-related toxicities than other groups. CONCLUSION: The results of this study do not suggest that treatment compliance with established guidelines differs by ethnicity. Our unexpected finding that Hawaiian and Chinese women experienced lower levels of Grade 3 and 4 chemotherapy-related toxicities deserves further investigation.

Aged↗
PubMed2005

Adaptation to long-term prostate cancer survival: the perspective of elderly Asian/Pacific Islander wives.

Increasingly evident is the important role of partners in patients' adaptation to diagnosis, treatment, and recovery. Yet, little is known about partners' adaptation when patients reach the benchmark known as long-term survival. This study describes elderly wives of prostate cancer survivors' perspectives of adaptation to the enduring challenges of prostate cancer survival and considers their experience in the context of ethnicity. Content analysis and grounded theory methods guided data collection and analysis of two waves of in-depth interviews with 26 elderly Asian/Pacific Islanders (Chinese, Filipino, Japanese, Native Hawaiian) living in Hawai'i. Continuous learning was the most common phenomenon as reflected in four types of adaptive work: involvement in husband's health, affirmation of the marital bond, normalization of adversity, and participation in personally meaningful acts. Issues are highlighted for consideration in developing culturally relevant, age-appropriate, and strengths-based interventions.

Adaptation, Psychological↗
PubMed2004

Ethnic differences in breast cancer in Hawai'i: age, stage, hormone receptor status, and survival.

Previous examinations of breast cancer and survival in Hawai'i's 5 major ethnic groups have found that Native Hawaiian women have the highest breast cancer mortality rates. Although ethnic disparities in survival are reduced when age and stage at diagnosis are controlled for statistically, prior studies could not explain ethnic variation in survival among women who were diagnosed at the same stage. We examined variations in breast tumor characteristics for a multiethnic sample of 4,583 women diagnosed in 1990-1997 by stage and age group and extended previous multivariate analyses by adding a new prognostic variable: estrogen receptor (ER) and progesterone receptor (PR) status. Logistic regression was used to examine the influence of age, stage, and hormone status on 5-year survival. With a few exceptions, greater proportions of Native Hawaiian women were diagnosed both in later stages of disease and at earlier ages compared to women of other ethnicities, and smaller proportions of Native Hawaiians survived 5 years post diagnosis in each stage and age group. Surprisingly, greater proportions of Native Hawaiian women in all age groups had ER/PR positive tumors, which is a prognostic indicator for better, not worse, survival. Native Hawaiian women had an increased risk of death and Japanese women had an increased chance of survival after controlling for age, stage, and ER/PR status. Future studies should examine other reasons for better survival of Japanese women and worse survival of Native Hawaiian women, including socioeconomic status, access to health insurance, adequacy of recommended screening frequency, co-morbid conditions, treatment appropriateness and compliance, and genetic markers of tumor aggressiveness.

Adult↗
PubMed2004

Primary care physicians' knowledge, attitudes and practices related to cancer screening and cancer prevention clinical trials.

Native Hawaiians have high cancer incidence and mortality rates, thus would benefit from timely cancer screening and opportunities to participate in cancer prevention clinical trials. Two-hundred-fifty-four (254) primary care physicians (PCPs) were surveyed for their knowledge, attitudes, and practices related to cancer screening and prevention, clinical trials and participation of Native Hawaiians in them. More than 90% of responding PCPs follow guidelines for breast and cervical cancer screening and counsel patients on smoking cessation, and 75% or greater follow guidelines for colonoscopy/sigmoidoscopy testing and counsel patients on exercise, diet, and weight management. About 60% reported familiarity with at least one of three prevention trials offered at the time of the survey, and 28% reported having referred or recommended patients to cancer prevention trials in the past. Major barriers to discussing trials with patients included lack of awareness on the part of physicians and patients, limited support staff, and time constraints. Less than 30% of respondents were aware of community resources supporting cancer research. This study indicated that Hawai'i PCPs follow national guidelines for cancer screening, and many are aware of ongoing prevention trials. However, additional participation in cancer screening and prevention activities will require attention to reducing logistical barriers and increasing awareness of cancer information and research services.

Attitude of Health Personnel↗
PubMed2002

Determinants of the degree of complementary and alternative medicine use among patients with cancer.

OBJECTIVES: This study explored the use of complementary and alternative medicine (CAM) by degree of use (nonuse, light, moderate, and heavy) by patients with cancer as it relates to sociodemographic and disease characteristics, subjective well-being, and dissatisfaction with the health care system. DESIGN AND PARTICIPANTS: One hundred and forty-three (143) patients with cancer of Asian, Caucasian, and Pacific Islander ethnicities originally recruited through the state-wide population-based Hawaii Tumor Registry and interviewed approximately 3 years postdiagnosis. OUTCOME MEASURES: This study introduced a multidimensional measure, degree of CAM use, to rank participants by quantity of CAMs used as well as frequency, intensity, and breadth of use. Predictor variables explored were sociodemographic variables, disease site, quality-of-life measures, satisfaction with conventional treatment and physicians, satisfaction with medical information, and perceived severity of illness. RESULTS: Heavier CAM use was related to being female, Caucasian, having more education, having breast cancer, and having greater symptoms of nausea and vomiting. Heavier use was also associated with lower doctor satisfaction and a greater perception of disease severity. Sociodemographic and clinical variables accounted for the largest proportion of the variance in degree of use, but subjective well-being and health care satisfaction provided incremental increases in the variance explained. CONCLUSIONS: This study is one of few studies exploring predictors for the quantity or degree of use of CAM by patients with cancer. Understanding factors related to these patients' heavier or lighter CAM use has implications for health care offerings and cancer treatment decision-making.

Adult↗
PubMed2002

Oncologists' knowledge, attitudes and practices related to cancer treatment clinical trials.

Native Hawaiians have high incidence rates of cancers diagnosed in late stages and, thus, many might benefit from participation in cancer clinical trials. A survey was developed to explore knowledge, attitudes, and practices of Hawai'i oncologists with regard to cancer treatment clinical trials and Native Hawaiian participation in them. Findings suggest that most cancer specialists are supportive of clinical trials. However, physicians identified a number of barriers to Native Hawaiian participation in clinical trials. Ways to increase participation in clinical trials are suggested.

Attitude of Health Personnel↗
PubMedDate not supplied

Supports and obstacles to cancer survival for Hawaii's native people.

PURPOSE: Investigators have suggested that high cancer mortality rates among Native Hawaiians are due to fatalistic attitudes toward the disease, poor access to care, and lack of consideration of Native Hawaiian cultural values in Western approaches to healthcare. This study used qualitative methods to examine these factors in Native Hawaiian cancer survivors. METHODS: Eight focus groups were held on five islands, attracting 45 Native Hawaiian cancer survivors from both rural and urban locales. The focus groups explored survivors' experiences with cancer diagnosis, treatment, and recovery. Participatory research methods were used, with researchers gaining community input on study design, incorporating appropriate Native Hawaiian cultural protocols into the focus groups, and engaging participants in the interpretation of the data. RESULTS: Similar to cancer survivors of other ethnicities, these individuals demonstrated the following: success in accessing healthcare information, professionals, facilities, and insurance; the ability to overcome the barriers confronted; and proactive health behaviors regarding screening, diagnosis, and treatment. They also demonstrated ways in which they were sustained through the cancer experience by Native Hawaiian traditions, such as helping others, gaining strength from Hawaiian spiritual beliefs, and relying on family for personal support. Participants did not respond passively to their cancer diagnoses, and they expressed few fatalistic attitudes. Participants did give numerous examples of other Native Hawaiians who did not seek screening or treatment for cancer because they lacked insurance, had poor access to care, or felt alienated by Western healthcare. CLINICAL IMPLICATIONS: The findings suggest that improving access to care and incorporating cultural values in health education and services can enhance survivorship and quality of life for Native Hawaiians with cancer. These themes may have applications for other minority groups.

Attitude↗