The changing needs of patients with cancer at home. A longitudinal view.

Changes in the daily living needs of 629 patients with advanced cancer were investigated (1) during and (2) 3 to 6 months after a course of outpatient chemotherapy and/or radiation treatment. The analytic sample consisted of patients completing both baseline and follow-up interviews (n = 434). At both times, the point prevalence of need and unmet need for assistance with personal care, instrumental activities, transportation, and home health tasks was calculated. In addition, the prevalence of new need and unmet need at follow-up was determined as were the rates of resolution of baseline need. The prevalence of need for assistance with personal care increased from 7% at baseline to 16% at follow-up; the dynamic of need acquisition and resolution resulted in relatively constant prevalence rates in other task areas. Acquisition of need at follow-up was associated primarily with disease and treatment-related characteristics. Approximately one third of patients reporting need for assistance during at least one interview did not have enough help. New unmet need at follow-up was associated most strongly with patients' mobility and the ability of their informal support system to provide care. The apparently rapid fluctuation in patients' experience of need and unmet need suggests the necessity for ongoing appraisal of patients' physical condition and social situation.

Pre-diagnostic symptom recognition and help seeking among cancer patients.

Failure to recognize symptoms which signal cancer may delay contact with the medical care system, thus decreasing the chances of diagnosis at an early stage of disease. We investigated the determinants of cancer symptom recognition and delay in seeking medical care in a population-based sample of 625 newly diagnosed lung, breast and colorectal cancer patients. Although the majority (79.5%) of patients reported noticing symptoms prior to diagnosis, one quarter of these patients (24.7%) delayed longer than three months in seeking medical care. Contrary to the findings of research based on clinic samples, logistic regression analysis revealed that no demographic or social support factors were predictive of symptom recognition or delay, with the exception that older colorectal cancer patients were less likely to notice symptoms, but also less likely to delay. Lung and colorectal patients diagnosed with advanced disease were more likely to notice symptoms than patients with local disease. Results of a content analysis of patients' remarks indicate that breast cancer patients were significantly more likely than lung or colorectal cancer patients to attribute their symptoms to cancer (p less than .001). Symptoms common to lung and colorectal cancer appear to be attributed to other, less serious causes. Given the lack of demographic predictors of symptom recognition and delay in seeking care, we suggest that education programs address risk groups for specific cancers, rather than the general public as a whole, grouping together all cancers and cancer symptomatology.

A comparison of hospice vs conventional care of the terminally ill cancer patient.

Hospice is an alternative system of end-stage oncological care emphasizing palliative care, the patient and family as the unit of care, and the administration of care by an interdisciplinary team. Since its inception in the US in the early 1970s, hospice has evolved from a grass-roots social movement to a legitimate component of the health-care system, primarily serving a white, "young-old" cancer patient population under a variety of organizational arrangements. Data from the National Hospice Study compares medical and social service receipt by patients served in hospice and non-hospice settings during their last two weeks of life. Results indicate that patients served by conventional oncological care were more likely to receive diagnostic tests, chemotherapy, radiation therapy (for non-palliative purposes), surgery, and respiratory therapy than hospice patients. Social service interventions were more likely to be reported by hospice than non-hospice patients.

Public reaction to toxic waste contamination: analysis of a social movement.

In this article we explore citizen action against toxic waste as a social movement, emphasizing the unique challenges posed by the technological nature of the toxic waste issue. Unlike other contemporary health-related social movements such as the women's movement and anti-nuclear groups, the movement against toxic waste is not composed primarily of highly educated, upper-middle-class people who are motivated by global concerns. Toxic waste activists are typically working-class and lower-class people, politicized initially by perceptions of danger to the health of their families. However, awareness of global dangers and the larger political-economic issues related to toxic waste contamination is often emergent in the process of mobilization. The movement against toxic waste can be seen as part of a larger social trend toward increased public demand for a role in scientific and technological decision-making which challenges scientific criteria for assessing risk and experts' claim to technical knowledge. While toxic waste activism is better explained by European theorists' "new social movement theory" than by resource mobilization theory, the former theory does not account for the toxic waste movement's class composition. The necessity for developing a new theory of social movements that captures the complexities of toxic waste activism is discussed.

Risk of functional decline among well elders.

Active lifestyles may delay the onset of the functional consequences of chronic disease, potentially increasing active life expectancy. We analyzed the Longitudinal Study of Aging (LSOA) to test the hypothesis that elders participation in an active lifestyle prevents loss of function. Focusing on the cohort aged 70-74 who reported being able to carry 25 lb, walk 1/4 mile, climb 10 steps and do heavy housework without help and without difficulty at baseline, decline was defined as no longer being able to perform these tasks independently and without difficulty 2 years later. Using multivariate logistic regression, results reveal that those who did not report regularly exercising or walking a mile were 1.5 times more likely to decline than those who did, controlling for reported medical conditions and demographic factors. Similar findings (with different models) were observed for both men and women. Findings suggest the potential value of programs oriented toward the primary prevention of functional decline.

Lung, breast, and colorectal cancer: the relationship between extent of disease and age at diagnosis.

We examined the relationship between age and extent of disease at initial diagnosis as part of a population-based, prospective study documenting the patterns of care received by over 1500 newly diagnosed lung, breast, and colorectal cancer patients identified in nine Rhode Island hospitals. For each cancer site examined, no age by extent of disease relationship was observed; however, analysis by sex among lung cancer patients indicated an inverse age relationship for men. The absence of an age effect for breast cancer patients is in contrast to earlier research findings that identify a positive association between extent of disease and age at diagnosis. Past results may reflect age-related differences in patient and physician screening behavior characteristic of earlier time periods.

Relationship between age at diagnosis and treatments received by cancer patients.

Increases in cancer incidence and mortality reflect the larger numbers of elderly in the population. Using a mortality sample of 1891 biopsy-confirmed cancer patients, analyses reveal older breast, prostate, and cervical-uterine cancer victims were more likely to be diagnosed with metastases. Logistic regression analyses of subsamples of breast (N = 224), lung (N = 513), and colorectal (N = 299) cancer patients indicate that age is significantly inversely related to receipt of both subsequent chemotherapy and radiation therapy, controlling for stage of disease and presence of co-morbid disease. Exceptions to this relationship are the use of radiation therapy among nonmetastatic lung cancer patients and all breast cancer patients. The implications of these findings for current cancer control programs are discussed.

Terminally ill patients' and families' responses to participation in a research study.

Evaluations of the effect of interventions on the terminally ill focus on outcomes such as patient satisfaction and quality of life. Due to the theoretical nature of these measures, researchers must rely on patients and family members as primary data sources. Family members of terminally ill patients wee queried concerning their motives for participation in the National Hospice Study and their reactions to an intensive interview schedule. Of those contacted, 94% agreed to the interview. The most frequently cited reasons for participating in the study were the desire to help other families facing a serious illness and the desire to help the hospice movement. Responses indicated a real enthusiasm for study participation in spite of the stressful nature of the terminally ill patient's situation.

Staff burnout in a hospice setting.

Burnout is a job-related state characterized by emotional and physical exhaustion which can be caused by intense involvement over an extended period of time with people who are experiencing psychological and/or physical problems. People working in the health care professions have been identified as being particularly at risk for experiencing burnout. Based on hospice staff survey data collected as a part of the National Hospice Study (NHS), this paper describes multivariate analyses of selected demographic, occupational, and organizational predictors of burnout. Findings indicated that younger, better-educated staff are more prone to burnout, as are staff who work on a full-time basis in direct contact with patients. None of the hospice organizational factors tested were significantly related to burnout. Further research is necessary to determine whether or not such factors as staff support systems are effective in mitigating burnout among staff in the health care field.