Carolyn Cook Gotay

Health-related quality of life in survivors of locally advanced breast cancer: an international randomised controlled phase III trial.

BACKGROUNDnDose-intensive chemotherapy has generated much interest in the treatment of patients with locally advanced breast cancer because it might offer a survival benefit. We aimed to compare the effects of such an approach with those of standard chemotherapy on health-related quality of life (HRQOL).nnnMETHODSn224 patients with locally advanced breast cancer were randomly assigned to 75 mg/m(2) cyclophosphamide given orally on days 1-14, and 60 mg/m(2) epirubicin and 500 mg/m(2) fluorouracil both given intravenously on days 1 and 8, for six cycles every 28 days (6 months treatment; standard treatment) and 224 patients to 830 mg/m(2) cyclophosphamide and 120 mg/m(2) epirubicin both given intravenously on day 1, and 5 microg/kg filgrastim per day given subcutaneously on days 2-13, for six cycles every 14 days (3 months treatment; dose-intensive treatment). HRQOL was assessed by use of the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30). Baseline assessments were done before randomisation; then once a month for the first 3 months; and at months 6, 9, 12, 18, 26, 34, 42, 48, and 54. The primary endpoint was progression-free survival; secondary endpoints were HRQOL, response, safety, overall response, and health economics. Analyses were by intention to treat.nnnFINDINGSnPreviously reported data showed that groups did not differ in progression-free survival. Patients assigned shorter, intensified treatment had a significantly lower overall HRQOL score during the first 3 months than did those assigned standard treatment (mean score at 3 months 41.8 [SD 1.78] vs 49.6 [1.64], p=0.0015). However, scores returned to near baseline, with no difference between groups, at 12 months (62.6 [1.97] vs 65.6 [2.04], p=0.3007). Over the remaining 2 years, the groups showed few significant differences in HRQOL.nnnINTERPRETATIONnDose-intensive treatment only has a temporary effect on HRQOL, thus enabling more research on intensive treatment for patients with locally advanced breast cancer.

Assessment of Psychological Functioning in Cancer Patients

This article identifies frequently used instruments that have been used to measure psychological functioning in cancer patients, summarizes information about the use of these tools in samples of cancer patients, and provides a critical evaluation of and recommendations for developing assessment instruments. Issues of the Journal of Psychosocial Oncology published between 1986 and 1993 were reviewed to select the scales most commonly used to measure patients psychological functioning. Seven scales that assess depression, anxiety, psychological symptoms, mood, and general psychosocial adjustment to illness were identified: Beck Depression Inventory, Center for Epidemiological Studies-Depression, State-Trait Anxiety Inventory, Symptom Checklist 90-R, Brief Symptom Inventory, Profile of Mood States, and Psychosocia1 Adjustment to Illness Scale. A review of studies using the different scales in samples of cancer patients highlighted numerous issues concerning the validity of these tools. Future studies should...

Validation of the care notebook for measuring physical, mental and life well-being of patients with cancer

To measure patients’ QOL in the daily practice of clinical oncology, we developed and tested the Care Notebook. This instrument has 24 questions expressed in single words or short phrases to make it more acceptable to patients. The Care Notebook, EORTC QLQ-C30 and FACIT-Sp-12 were administered to 249 outpatients with cancer. Construct validity was investigated by cluster analysis and multitrait scaling analysis. The results showed that three scales (physical well-being, mental well-being, and life well-being) could explain 55 of the variance in scores. The life well-being scale could be divided into subscales of Daily Functioning, Social Functioning, and Subjective QOL. Multitrait scaling analysis confirmed convergent and discriminant validity of these scales and subscales. Internal consistency and test-retest reliability were favorable. Differences in Care Notebook scores were also consistent with differences in performance status rating (known-groups validity), and Care Notebook scores correlated with EORTC QLQ-C30 and FACT-Sp-12 scores (concurrent validity). The Care Notebook allows clinical oncologists to easily collect valid and reliable QOL information of physical, mental, and life well-being repeatedly and with minimal burden on patients.

Prognostic factor analysis of health-related quality of life data in cancer: a statistical methodological evaluation

A significant body of research exists in oncology to identify and evaluate prognostic factors, historically focused on histology, clinical stage and laboratory parameters. Recent evidence suggests that patient self-reported health-related quality-of-life (HRQOL) data provide additional prognostic information. A review by Gotay et al. of published prognostic analyses reports on the usefulness of patient-reported outcomes (PROs), including HRQOL, in predicting survival in cancer patients in clinical trials. An impressive number of studies have found a positive relationship that supports an independent association between HRQOL and survival. However, due to the considerable diversity in, for example, patient groups, types of HRQOL measures used and analytical strategies, current evidence is far from conclusive. This paper examines the statistical research methods employed, discusses key issues for HRQOL prognostic factor-analysis parameters and proposes recommendations for future outcome research.

Evaluations of Hawaii Creole English and Standard English

The growing number of multicultural dialect and creole speakers entering the public school system underlines the importance of understanding perceptions pertaining to language standards and differences. Previous research has shown a consistent evaluative difference between nonstandard and standard linguistic forms. In this study, 197 university students were randomly assigned to rate an audio tape delivered in Hawaii Creole English or Standard English. Results were similar to previous studies in that the speaker’s language had a significant impact on the listeners’ ratings. Listeners rated Standard English higher on superiority traits and quality of speech. However, Hawaii Creole English was favored on dynamism traits. Furthermore, listeners’ own ethnicity and language ability influenced their ratings on quality, attractiveness, and dynamism. Findings have implications for educational programs designed to teach English and for the broad multicultural population.

Preferences for Psychosocial Interventions Among Newly Diagnosed Cancer Patients from a Multiethnic Population

Abstract This article addresses preferences for psychosocial interventions in newly diagnosed cancer patients in a multiethnic sample consisting of Americans of European, Filipino, Native Hawaiian, and Japanese ancestry. Patients who were diagnosed with cancer four to six months before the study were identified through consecutive registrations on the Hawai‘i Tumor Registry. Data were collected through personal interviews using a standardized questionnaire. Among 194 patients who participated in the study, 162 (84%) reported experiencing cancer-related stress. Although few patients had participated in supportive interventions, there was considerable interest in these techniques. Most patients had received information about diagnosis and treatment, but only 10% had received information about psychological counseling. When preferences for supportive interventions were linked with demographic characteristics (e.g., gender, age, and ethnicity), the most consistent finding was higher levels of interest among Filipino patients. Additional research examining ethnic differences in preferences for psychosocial support is warranted. Because of the potential for greater use of behavioral therapies by patients, educating providers about the availability, efficacy, and patients’ interest in such interventions is needed.

Health attitudes and behaviors: comparison of Japanese and Americans of Japanese and European Ancestry.

Adults living in Japan (N = 357) and the US (N = 223) completed semi-structured interviews assessing health-related attitudes and practices. The US respondents were of Japanese (N = 106) and European (N = 117) ancestry. Results indicated considerable similarity between the two US groups and significant differences between the Japanese and American respondents. The Japanese respondents placed less priority on health, had less belief in the efficacy of health screening tests, lower levels of internal health locus of control (HLOC), and higher levels of chance and powerful-others HLOC. While Japanese and Americans had similar overall levels of healthy behaviors, the Japanese were less likely to have obtained health screening tests (especially gynecologic exams). The findings have implications for adapting health promotion programs in the context of Japanese and American cultures.

Cultural Aspects of Cancer Prevention and Control

Publisher Summary This chapter discusses cultural aspects of cancer prevention and control. Cancer is one of the most serious health threats in the United States. Currently, cancer has become increasingly prevalent and it is the second leading cause of death. This chapter focuses on cultures impact on individuals during their cancer experience. In this chapter, the concept of culture includes the central areas thought to define a cultural group, encompassing shared common beliefs, ideas, experiences, knowledge, attitudes, and behaviors, as all of these elements pertain to variations in cancer experiences. The chapter also discusses patterns of cancer in different ethnic groups; ethnic and cultural differences in knowledge, attitudes, and behaviors about cancer; cancer prevention, screening, and early detection; reactions to a diagnosis of cancer; and living with cancer. It emphasizes on the largest ethnic subgroups in the United States (African Americans, Native Americans, Asians and Pacific Islanders, and Hispanics) and comparisons are made with the majority population (White). The chapter concludes that 1500 Americans die of cancer each day stands as a stark reminder of the need for research, as well as its tremendous potential to make a positive difference.

The Cancer Outcomes Measurement Working Group: rationale overview and a look to the future

In 2001, the US National Cancer Institute created the Cancer Outcomes Measurement Working Group (COMWG) to assess the state-of-the-science of outcomes assessment in cancer and to make recommendations for moving the field forward. The COMWG focused on methods for assessing patient-reported outcomes (health-related QoL, patient needs and satisfaction and economic burden) in four cancers (breast, prostate, lung and colorectal) across the continuum of care (prevention/screening, treatment, survivorship and end-of-life). COMWG members also considered different perspectives on, and uses of, patient-reported outcomes data, including individual clinician–patient decision making, clinical trials and observational studies, and population surveillance and policy making. This Special Report describes the rationale behind the COMWGs creation, summarizes the COMWGs activities, notes selected findings and looks to the future of outcomes assessment in cancer.

Quality of life assessment in cancer clinical research: current status and a look to the future

Quality of life (QOL) is a term that has been used to denote outcomes as experienced by the patient. Although definitions of QOL vary, virtually all investigators agree that QOL in clinically-ill individuals encompasses multiple domains or areas of well-being (including, at a minimum, physical, psychological and social functioning, as well as symptoms) and that the perspective of the patient is critical in any measurement of QOL. While patient perspectives are important in any health condition, they become particularly so in diseases which are chronic or incurable and for which treatments have toxic orlong-lasting consequences. Cancer fits these criteria. Cancer is the second leading cause of death in the USA, with one in every four deaths due to the disease. Approximately 38% of cancer patients die within 5 years of diagnosis. Cancer treatments are powerful and toxic. For example, surgery removes tumors and in many cases, adjacent body parts. Radiation therapy kills cancer cells by directing high energy x-rays, electron beams or radioactive isotopes at tumors. Chemotherapy causes the death of cancer cells through the administration of agents that disrupt a cancer cell’s growth cycle. All of these treatments affect normal tissue, as well as cancer cells, and generally result in multiple side effects, such as loss of hair, nausea and frequently vomiting which are associated with chemotherapy. Treatment-related effects may be short-term and time-limited, chronic and persistent or late that only emerge after therapy has been completed, sometimes many years later. Cancer therapy involves continual efforts to minimize side effects while at the same increasing the chances of surviving the disease. As such, patient perspectives become critical in evaluating whether or not therapies and their toxicities are tolerable and acceptable.