Karen Kaiser

Childhood Emotional and Behavioral Problems and Educational Attainment

Do childhood emotional and behavioral problems diminish the probability of graduating from high school and attending college? If so, are their effects primarily attributable to the persistence of those problems over time, to continuities in social environments, or to the cumulative effects of early academic failures? We provide answers to these questions using data from the Children of the National Longitudinal Surveys of Youth data set (1986-2000). Internalizing and externalizing problems at ages 6-8 significantly and strongly diminish the probability of receiving a high school degree. Among youth who receive a high school degree, externalizing problems also diminish the probability of subsequent college enrollment. In the case of high school degree receipt, the educational disadvantages associated with child emotional and behavioral problems result from the association of those problems with academic failures in middle and high school. In contrast, the association of childhood behavior problems with college enrollment appears to reflect the persisting effects of early behavioral and academic predispositions. Our results add to a growing body of research that demonstrates that social selection processes contribute to socioeconomic disparities. They also suggest new directions for research concerned with socially-structured, transactional, person-environment interactions.

Protecting Respondent Confidentiality in Qualitative Research

For qualitative researchers, maintaining respondent confidentiality while presenting rich, detailed accounts of social life presents unique challenges. These challenges are not adequately addressed in the literature on research ethics and research methods. Using an example from a study of breast cancer survivors, I argue that by carefully considering the audience for one’s research and by reenvisioning the informed consent process, qualitative researchers can avoid confidentiality dilemmas that might otherwise lead them not to report rich, detailed data.

Misconceptions about breast lumps and delayed medical presentation in urban breast cancer patients

Background: Despite current recommendations for women to be screened for breast cancer with mammography every 1 to 2 years, less than half of all newly diagnosed breast cancers are initially detected through screening mammography. Prompt medical attention to a new breast symptom can result in earlier stage at diagnosis, yet many patients delay seeking medical care after becoming aware of a breast symptom. Methods: In a population-based study of breast cancer, we examined factors potentially associated with patient delay in seeking health care for a breast symptom among 436 symptomatic urban breast cancer patients (146 white, 197 black, and 95 Hispanic). Race/ethnicity, socioeconomic status, health care access and utilization, and misconceptions about the meaning of breast lumps were the key independent variables. Results: Sixteen percent of patients reported delaying more than 3 months before seeking medical advice about breast symptoms. Misconceptions about breast lumps and lacking a regular provider, health insurance, and recent preventive care were all associated with prolonged patient delay (P < 0.005 for all). Misconceptions were much more common among ethnic minorities and women of lower socioeconomic status. Conclusion: Reducing patient delay and disparities in delay will require educating women about the importance of getting breast lumps evaluated in a timely manner and providing greater access to regular health care. Cancer Epidemiol Biomarkers Prev; 19(3); 640–7

The import of trust in regular providers to trust in cancer physicians among white, African American, and Hispanic breast cancer patients.

BACKGROUNDInterpersonal trust is an important component of the patient-doctor relationship. Little is known about patients’ trust in the multiple providers seen when confronting serious illness.OBJECTIVESTo characterize breast cancer patients’ trust in their regular providers, diagnosing physicians, and cancer treatment team and examine whether high trust in one’s regular provider confers high trust to cancer physicians.DESIGNIn-person interviews.PARTICIPANTS704 white, black, and Hispanic breast cancer patients, age 30 to 79, with a first primary in situ or invasive breast cancer who reported having a regular provider.MEASURESWe measure trust in: (1) regular provider, (2) diagnosing doctors, and (3) cancer treatment team. Other variables include demographic variables, preventive health care, comorbidities, time with regular provider, time since diagnosis, cancer stage, and treatment modality.RESULTSSixty-five percent of patients reported high trust in their regular provider, 84% indicated high trust in their diagnosing doctors, and 83% reported high trust in their treatment team. Women who reported high trust in their regular provider were significantly more likely to be very trusting of diagnosing doctors (OR: 3.44, 95% CI: 2.27–5.21) and cancer treatment team (OR: 3.09, 95% CI: 2.02–4.72 ). Black women were significantly less likely to be very trusting of their regular doctor (OR: 0.58, 95% CI: 0.38–0.88) and cancer treatment team (OR: 0.45, 95% CI: 0.25–0.80). English-speaking Hispanic women were significantly less trusting of their diagnosing doctors (OR: 0.29, 95% CI: 0.11–0.80).CONCLUSIONSOur results suggest that patients are very trusting of their breast cancer providers. This is an important finding given that research with other populations has shown an association between trust and patient satisfaction and treatment adherence. Our findings also suggest that a trusting relationship with a regular provider facilitates trusting relationships with specialists. Additional work is needed to increase interpersonal trust among black women.

Are racial differences in patient-physician cancer communication and information explained by background, predisposing, and enabling factors?

Research shows that African Americans tend to have poorer and less informative patient–physician communication than Whites. We analyzed survey data from 248 African American and 244 White cancer patients to examine whether this disadvantage could be explained by race variability on several other variables commonly reported to affect communication. These variables were organized into background, enabling, and predisposing factors, based on the Precede-Proceed Model. Multivariate regressions were used to test whether race differences in communication and information variables persisted after successively controlling for background, enabling, and predisposing factors. African American patients had higher interpersonal communication barriers than Whites, but this difference did not persist after controlling for background factors. African Americans also had higher unmet information needs and were less likely to receive the name of a cancer expert. These differences persisted after controlling for all other factors. Future research should focus on the informational disadvantages of African American patients and how such disadvantages may affect cancer treatment decisions.

Decision Making about Cancer Screening: An Assessment of the State of the Science and a Suggested Research Agenda from the ASPO Behavioral Oncology and Cancer Communication Special Interest Group

Broad participation in screening is key to cancer prevention and early detection. Unfortunately, screening rates are low for many modalities. At its core, successful screening involves an individual deciding to take action (e.g., completing self-exams or scheduling appointments). Therefore, the

Development of a shared decision-making tool to assist patients and clinicians with decisions on oral anticoagulant treatment for atrial fibrillation

Abstract Objective: Decision aids (DAs) are increasingly used to operationalize shared decision-making (SDM) but their development is not often described. Decisions about oral anticoagulants (OACs) for atrial fibrillation (AF) involve a trade-off between lowering stroke risk and increasing OAC-associated bleeding risk, and consideration of how treatment affects lifestyle. The benefits and risks of OACs hinge upon a patient’s risk factors for stroke and bleeding and how they value these outcomes. We present the development of a DA about AF that estimates patients’ risks for stroke and bleeding and assesses their preferences for outcomes. Research design and methods: Based on a literature review and expert discussions, we identified stroke and major bleeding risk prediction models and embedded them into risk assessment modules. We identified the most important factors in choosing OAC treatment (warfarin used as the default reference OAC) through focus group discussions with AF patients who had used warfarin and clinician interviews. We then designed preference assessment and introductory modules accordingly. We integrated these modules into a prototype AF SDM tool and evaluated its usability through interviews. Results: Our tool included four modules: (1) introduction to AF and OAC treatment risks and benefits; (2) stroke risk assessment; (3) bleeding risk assessment; and (4) preference assessment. Interactive risk calculators estimated patient-specific stroke and bleeding risks; graphics were developed to communicate these risks. After cognitive interviews, the content was improved. The final AF tool calculates patient-specific risks and benefits of OAC treatment and couples these estimates with patient preferences to improve clinical decision-making. Conclusions: The AF SDM tool may help patients choose whether OAC treatment is best for them and represents a patient-centered, integrative approach to educate patients on the benefits and risks of OAC treatment. Future research is needed to evaluate this tool in a real-world setting. The development process presented can be applied to similar SDM tools.

Development and validation of the functional assessment of cancer therapy-antiangiogenesis subscale.

The Functional Assessment of Cancer Therapy (FACT)–Antiangiogenesis (AntiA) Subscale was developed and validated to enhance treatment decision‐making and side effect management for patients receiving anti‐angiogenesis therapies. Side effects related to anti‐angiogenesis therapies were identified from the literature, clinician input, and patient input. Fifty‐nine possible patient expressions of side effects were generated. Patient and clinician ratings of the importance of these expressions led us to develop a 24‐item questionnaire with clinical and research potential. To assess the scales reliability and validity, 167 patients completed the AntiA Subscale, the Functional Assessment of Cancer Therapy‐general (FACT‐G), the FACT‐Kidney Symptom Index (FKSI), the FACIT‐Fatigue Subscale, the Global Rating of Change Scale (GRC), and the PROMIS Global Health Scale. Patient responses to the AntiA were analyzed for internal consistency, test–retest reliability, convergent and discriminant validity, and responsiveness to change in clinical status. All tested scales were found to have good internal consistency reliability (Cronbachs alpha 0.70–0.92). Test–retest reliability was also good (0.72–0.88) for total and subscale scores and lower for individual items. The total score, subscale scores, and all single items (except nosebleeds) significantly differentiated between groups defined by level of side effect bother. Evaluation of responsiveness to change in this study was not conclusive, suggesting an area for further research. The AntiA is a reliable and valid measure of side effects from anti‐angiogenesis therapy.

Health-related quality of life among women with ductal carcinoma in situ or early invasive breast cancer: validation of the FACT-B (version 4)

ABSTRACT Objectives: To examine the reliability and validity of the Functional Assessment of Cancer Therapy-Breast (FACT-B) Version 4. Methods: Women ≥ 40 years with DCIS or early invasive breast cancer treated with whole breast irradiation (n=280) completed patient-reported outcome measures at three time points. Results: Most internal consistency reliability coefficients were 0.70 or greater. At baseline and 6 months, mean FACT-B scores were comparable between physician-reported cosmetic outcome subgroups; at 12 months, most scores were higher (better) for the “excellent” cosmesis group compared to “poor/fair/good” (p<0.05). Most mean FACT-B scores were higher for those with Grade 0-1 CTCAE toxicities versus Grade 2-3 (p<0.05). There were medium to large correlations between the FACT-B and the Body Image Scale. Most FACT-B mean scores were significantly different across BIS change groups (p<0.05). Conclusions: The FACT-B exhibited good reliability and validity in this sample of 280 women treated for DCIS and early invasive breast cancer.

A method to create a standardized generic and condition-specific patient-reported outcome measure for patient care and healthcare improvement

PurposePatient-reported outcome measures (PROMs), which are generic or condition-specific, are used for a number of reasons, including clinical care, clinical trials, and in national-level efforts to monitor the quality of health care delivery. Creating PROMs that meet different purposes without overburdening patients, healthcare systems, providers, and data systems is paramount. The objective of this study was to test a generalizable method to incorporate condition-specific issues into generic PROM measures as a first step to producing PROMs that efficiently provide a standardized score. This paper outlines the method and preliminary findings focused on a PROM for osteoarthritis of the knee (OA-K).MethodsWe used a mixed-methods approach and PROMIS® measures to test development of a combined generic and OA-K-specific PROM. Qualitative methods included patient focus groups and provider interviews to identify impacts of OA-K important to patients. We then conducted a thematic analysis and an item gap analysis: identified areas covered by existing generic PROMIS measures, identified “gap” areas not covered, compared gap areas to legacy instruments to verify relevance, and developed new items to address gaps. We then performed cognitive testing on new items and drafted an OA-K-specific instrument based on findings.ResultsWe identified 52 existing PROMIS items and developed 24 new items across 14 domains.ConclusionsWe developed a process for creating condition-specific instruments that bridge gaps in existing generic measures. If successful, the methodology will create instruments that efficiently gather the patient’s perspective while allowing health systems, researchers, and other interested parties to monitor and compare outcomes over time, conditions, and populations.