Kathryn L. Taylor

Care for the caregivers: a review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers

Significant demands are being placed on the informal caregivers of chronically ill patients, including those suffering from cancer. Health care professionals need to be aware of these demands, and they need effective tools to assess the impact these demands place on the caregivers. Over the past 25 years, researchers have developed self-report instruments to assess informal caregivers. These instruments assess various aspects of the caregiving experience, including caregiver burden, needs, and quality of life. The purpose of this review was to identify and critically evaluate these instruments. MEDLINE and PUBMED were searched from 1966 to 2002. After an extensive literature search and review, and utilizing specific inclusion criteria, 28 instruments were identified and evaluated in terms of their development, content, and psychometric properties. In addition, a history of the construct and measurement development in the areas of caregiver burden, needs, and quality of life are discussed. Although some further development and refinement of instruments could benefit the field, depending on the questions researchers or clinicians seek to pursue, there are many proven tools available for their use. Future research needs to use these instruments to assess the effectiveness of interventions aimed at improving the care of the caregivers.

Nicotine dependence treatment for patients with cancer

Cancer patients who use tobacco demonstrate characteristics of strong nicotine dependence and are at increased risk for future tobacco‐related morbidity and mortality. Continued smoking may contribute to poorer cancer treatment outcome and additional illness. In contrast, stopping smoking may improve quality of life and facilitate cancer treatment. Unfortunately, limited attention has been given to addressing tobacco use and treating nicotine dependence in cancer patients.

Long-term outcomes of BRCA1/BRCA2 testing: risk reduction and surveillance.

For BRCA1/BRCA2 gene testing to benefit public health, mutation carriers must initiate appropriate risk management strategies. There has been little research examining the long‐term use and prospective predictors of the full range of risk management behaviors among women who have undergone BRCA1/2 testing. We evaluated long‐term uptake and predictors of risk‐reducing mastectomy (RRM), risk‐reducing bilateral salpingo‐oophorectomy (RRBSO), chemoprevention, and cancer screening among women at a mean of 5.3 years after testing.

Psychological adjustment among African American breast cancer patients: One-year follow-up results of a randomized psychoeducational group intervention.

The effectiveness of support group interventions for cancer patients has been established among White patients but has been virtually unstudied among minority patients. The current study represents the 1st randomized support group intervention targeted to African American women with breast cancer. Participants (N = 73) with nonmetastatic breast cancer were randomly assigned to an 8-week group intervention or an assessment-only control condition At 12 months, the intervention resulted in improved mood as well as improved general and cancer-specific psychological functioning among women with greater baseline distress or lower income. Subsequent research is needed to address effective methods of enrolling and following women with fewer psychosocial and financial resources, as they were the most likely to benefit from this particular intervention.

impact of lung cancer Screening results on Smoking cessation

BACKGROUND Lung cancer screening programs may provide opportunities to reduce smoking rates among participants. This study evaluates the impact of lung cancer screening results on smoking cessation. METHODS Data from Lung Screening Study participants in the National Lung Screening Trial (NLST; 2002-2009) were used to prepare multivariable longitudinal regression models predicting annual smoking cessation in those who were current smokers at study entry (n = 15489, excluding those developing lung cancer in follow-up). The associations of lung cancer screening results on smoking cessation over the trial period were analyzed. All hypothesis testing used two sided P values. RESULTS In adjusted analyses, smoking cessation was strongly associated with the amount of abnormality observed in the previous years screening (P < .0001). Compared with those with a normal screen, individuals were less likely to be smokers if their previous years screen had a major abnormality that was not suspicious for lung cancer (odds ratio [OR] = 0.811; 95% confidence interval [CI] = 0.722 to 0.912; P < .001), was suspicious for lung cancer but stable from previous screens (OR = 0.785; 95% CI = 0.706 to 0.872; P < .001), or was suspicious for lung cancer and was new or changed from the previous screen (OR = 0.663; 95% CI = 0.607 to 0.724; P < .001). Differences in smoking prevalence were present up to 5 years after the last screen. CONCLUSIONS Smoking cessation is statistically significantly associated with screen-detected abnormality. Integration of effective smoking cessation programs within screening programs should lead to further reduction in smoking-related morbidity and mortality.

Educating African American Men about the Prostate Cancer Screening Dilemma: A Randomized Intervention

Background: Until there is a definitive demonstration that early diagnosis and treatment of prostate cancer reduces disease-related mortality, it is imperative to promote informed screening decisions by providing balanced information about the potential benefits and risks of prostate cancer screening. Within a community/academic collaboration, we conducted a randomized trial of a printed booklet and a videotape that were designed for African American (AA) men. The purpose of the trial was to determine the effect of the interventions on knowledge, decisional conflict, satisfaction with the screening decision, and self-reported screening. Methods: Participants were 238 AA men, ages 40 to 70 years, who were members of the Prince Hall Masons in Washington, DC. Men were randomly assigned to the (a) video-based information study arm, (b) print-based information study arm, or (c) wait list control study arm. Intervention materials were mailed to men at home. Assessments were conducted at baseline, 1 month, and 12 months postintervention. Multivariate analyses, including ANCOVA and logistic regression, were used to analyze group differences. Results: The booklet and video resulted in a significant improvement in knowledge and a reduction in decisional conflict about prostate cancer screening, relative to the wait list control. Satisfaction with the screening decision was not affected by the interventions. Self-reported screening rates increased between the baseline and the 1-year assessment, although screening was not differentially associated with either of the interventions. In exploratory analyses, prostate-specific antigen testing at 1 year was more likely among previously screened men and was associated with having low baseline decisional conflict. Conclusions: This study represents one of the first randomized intervention trials specifically designed to address AA mens informed decision making about prostate cancer screening. We have developed and evaluated culturally sensitive, balanced, and disseminable materials that improved knowledge and reduced decisional conflict about prostate cancer screening among AA men. Due to the high incidence and mortality rates among AA men, there is a need for targeted educational materials, particularly materials that are balanced in terms of the benefits and risks of screening. (Cancer Epidemiol Biomarkers Prev 2006;15(11):2179–88)

Breast Cancer Adjuvant Chemotherapy Decisions in Older Women: The Role of Patient Preference and Interactions With Physicians

PURPOSE Breast cancer chemotherapy decisions in patients > or = 65 years old (older) are complex because of comorbidity, toxicity, and limited data on patient preference. We examined relationships between preferences and chemotherapy use. METHODS Older women (n = 934) diagnosed with invasive (> or = 1 cm), nonmetastatic breast cancer from 2004 to 2008 were recruited from 53 cooperative group sites. Data were collected from patient interviews (87% complete), physician survey (93% complete), and charts. Logistic regression and multiple imputation methods were used to assess associations between chemotherapy and independent variables. Chemotherapy use was also evaluated according to the following two groups: indicated (estrogen receptor [ER] negative and/or node positive) and possibly indicated (ER positive and node negative). RESULTS Mean patient age was 73 years (range, 65 to 100 years). Unadjusted chemotherapy rates were 69% in the indicated group and 16% in the possibly indicated group. Women who would choose chemotherapy for an increase in survival of < or = 12 months had 3.9 times (95% CI, 2.4 to 6.3 times; P < .001) higher odds of receiving chemotherapy than women with lower preferences, controlling for covariates. Stronger preferences were seen when chemotherapy could be indicated (odds ratio [OR] = 7.7; 95% CI, 3.8 to 16; P < .001) than when treatment might be possibly indicated (OR = 1.9; 95% CI, 1.0 to 3.8; P = .06). Higher patient rating of provider communication was also related to chemotherapy use in the possibly indicated group (OR = 1.9 per 5-point increase in communication score; 95% CI, 1.4 to 2.8; P < .001) but not in the indicated group (P = .15). CONCLUSION Older womens preferences and communication with providers are important correlates of chemotherapy use, especially when benefits are more equivocal.

Optimism, Social Support, and Adjustment in African American Women with Breast Cancer

Past studies show that optimism and social support are associated with better adjustment following breast cancer treatment. Most studies have examined these relationships in predominantly non-Hispanic White samples. The present study included 77 African American women treated for nonmetastatic breast cancer. Women completed measures of optimism, social support, and adjustment within 10-months of surgical treatment. In contrast to past studies, social support did not mediate the relationship between optimism and adjustment in this sample. Instead, social support was a moderator of the optimism-adjustment relationship, as it buffered the negative impact of low optimism on psychological distress, well-being, and psychosocial functioning. Women with high levels of social support experienced better adjustment even when optimism was low. In contrast, among women with high levels of optimism, increasing social support did not provide an added benefit. These data suggest that perceived social support is an important resource for women with low optimism.

Distress, personality, and mammography utilization among women with a family history of breast cancer.

The authors examined the impact of psychological distress and the personality construct of conscientiousness (as measured by the Neuroticism, Extraversion, and Openness-Five Factor Inventory) on mammography utilization among women who were at increased risk for breast cancer. Participants were 200 women who had at least 1 first degree relative with breast cancer. Overall, 80% of the participants had obtained a mammogram in the previous year. Analyses controlling for potential confounders (perceived risk, decisional balance, and physician recommendation for mammography), revealed that distress was negatively associated with mammography utilization among participants who were low in conscientiousness. Distress was not significantly related to mammography utilization among highly conscientious women. The results are discussed in terms of their implications regarding interventions designed to increase mammography utilization in this population.

Impact of diagnosis and treatment of clinically-localized prostate cancer on health-related quality of life for older Americans: a population-based study

Few studies have measured longitudinal changes in health‐related quality of life (HRQOL) among patients with prostate cancer starting before their cancer diagnosis or have provided simultaneous comparisons with a matched noncancer cohort. In the current study, the authors addressed these gaps by providing unique estimates of the effects of a cancer diagnosis on HRQOL accounting for the confounding effects of ageing and comorbidity.