Nancy Kuhrik

An Analysis of Educational and Learning Needs of Cancer Patients and Unrelated Family Caregivers

Family caregiving involves the provision of care by family members and self-care by patients, with the two groups participating together in illness-related care. A convenience sample of 100 patients and 100 unrelated family caregivers were surveyed to examine their perceptions of the caregiving skills they perform, the difficulty they experience in performing certain skills, and their associated learning needs. Descriptive analysis of data revealed differences in the type of activities patients and caregivers perform, the perceived difficulty of caregiving tasks, and their need for assistance. Uncertainty about disease stage poses important implications for educators.

Consent Form Heterogeneity in Cancer Trials: The Cooperative Group and Institutional Review Board Gap

BACKGROUND Cooperative group (CG) provided consent forms (CGP-CFs) undergo re-review and revision by local institutional review boards (IRB) before institutional approval. We compared the relative readability and length of IRB-approved consent forms (IRB-CFs) used at seven academic institutions with their corresponding CGP-CFs. We also assessed the variability of these metrics across our institutions. METHODS This study included 197 consent forms (CFs) from 56 CG trials that were open in at least two of the participating institutions. The Flesch Reading Ease Score (FRES), the Flesch-Kincaid Grade Level (FKGL), and document length were collected on all CFs. Unpaired t test was used to compare length and readability of CGP-CF with the IRB-CF. Analysis of variance and Bonferroni-Dunn tests were used to assess interinstitutional variability in readability for all IRB-CFs. All statistical tests were two-sided. RESULTS IRB-CFs were statistically significantly longer than CGP-CFs (mean number of pages = 17 vs 13; P < .001). Mean FKGLs were higher (10.3 vs 9.4; P < .0001) and the mean FRESs were lower (53.1 vs 57.1; P < .0001) for IRB-CFs compared with CGP-CFs. Readability varied statistically significantly between institutions for all sections of the IRB-CF (P < .0001). Finalized IRB-CFs for identical clinical trials at different institutions demonstrated substantial heterogeneity of readability and length. CONCLUSIONS As CFs progress from National Cancer Institute (NCI)-sponsored CGs to local IRBs, they seem to become longer and less readable. Interinstitutional heterogeneity in CF readability is substantial and widespread. More consistent adherence to CGP-CFs based on the newly revised NCI CF template with minimal modification by local IRBs should help simplify and standardize CFs used in cancer clinical trials.

An Instructional DVD Fall-Prevention Program for Patients With Cancer and Family Caregivers

PURPOSE/OBJECTIVES Determine the efficacy of a fall-prevention skills training program for patients with cancer and family caregivers. DESIGN Randomized, controlled trial with repeated measures and postintervention measure of fall occurrence. SETTING A comprehensive cancer center in the midwestern United States. SAMPLE 132 patient and family caregiver dyads. METHODS Dyads were randomly assigned to one of two groups: a control group that received standard fall-prevention education or a treatment group that received standard education and a fall-prevention DVD program to view at home. Participants completed surveys at baseline, one week, one month, and three months. Follow-up phone calls were made at three months. MAIN RESEARCH VARIABLES Fall occurrence, perceptions of fall risks, and fall-prevention knowledge. FINDINGS Patients in the treatment group were significantly more likely to report not falling at three months than patients in the control group. The number of falls was lower for the treatment group. The difference was not statistically significant. Dyads in the treatment group showed significantly greater improvement over time in fall risk awareness and fall-prevention knowledge. CONCLUSIONS Mobility skills training is a promising educational intervention for reducing fall occurrences in the home for patients with cancer. IMPLICATIONS FOR NURSING Efforts are needed for improving the knowledge and skills of cancer survivors and their family members in recognizing patient fall risks, making home adjustments, and performing mobility skills competently.

Expansion of an outpatient education program in a comprehensive cancer center.

127 Information and educational interventions for patients with cancer and their families are ubiquitous in a comprehensive cancer center. Coping with the diagnosis and treatment of cancer is stressful and requires patients to learn how to manage the physical and emotional aspects of their care. Although needs vary across the cancer trajectory (Adams, 1991; Skalla, Bakitas, Furstenberg, Ahles, & Henderson, 2004), patients with cancer, regardless of their age (Cassileth, Zupkis, Sutton-Smith, & March, 1980; Chelf et al., 2001, 2002), want as much information as possible to help them make treatment decisions (Chelf et al., 2001, 2002; Skalla et al., 2004). Educators of patients with cancer and their families need to be cognizant of the particular challenge of cancer raising the specter of death; it can be a possible learning barrier but, on the positive side, a motivational factor to learn what is necessary to live (Agre & Shaftic, 2007). Providing a variety of methods for patients to learn about their disease processes and ways to handle side effects from medications and treatments allows patients to build a plan related to acquiring new material. Hearing information multiple times also helps learners develop schemata for complex information related to their cancer care. Teaching patients with cancer about their disease, how to manage treatmentrelated side effects, and strategies to improve quality of life has the potential to decrease patient anxiety and improve the cancer experience for patients and their families (Chelf et al., 2002). Skalla et al. (2004) reported that patients found it helpful to hear other patients share their experiences about management of their treatment-related side effects.

Developing and implementing a local education and support program for patients with gastrointestinal stromal tumors (GISTs).

Providing a venue for quality education and support groups that meet the needs of oncology patients with both common and rare cancers is a challenge for most cancer centers. We describe how this challenge was addressed and the process used to develop, pilot, implement, and evaluate a successful model that can be used as a template in other cancer centers. We will demonstrate how an interdisciplinary team can work together to develop and sustain a successful, useful, low-cost education, and support program for patients with an uncommon cancer. Patients who receive diagnoses of cancer are confronted with having to process very complicated information about their diagnoses, treatment options, and prognoses, perhaps more than any other patient population [1]. Coping with a cancer diagnosis is an overwhelming and stressful life experience and requires patients to learn about their illness, make difficult treatment decisions, and manage the psychological and physical consequences of the disease. The evidence indicates that patients with cancer want factual information to aid them in their decision making and coping [2–5]. If patients are to be active partners in their healthcare, it is essential that they receive accurate and clear information about their diagnoses [6]. Through education about their disease processes and management of side effects, the anxieties of patients and decisional conflicts can be decreased, while coping abilities and quality of life can be enhanced [6].

Cancer Awareness Resources to go (C.A.R.T.): A Project to Increase Access to Cancer Patient Education at the Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine

Background. Being told one has cancer requires patients to understand their disease and cope with physical and emotional aspects of their illness. Methods. The Cancer Awareness Resources to go (C.A.R.T.) Planning Committee identified the need to provide cancer patients expanded access to educational materials. Results. For those patients who find it helpful to use booklets and medical pamphlets as an information source, having resources readily available on a mobile cart in a busy waiting area allows each person to retrieve the information they want at their time of need. Conclusions. This supports the individualized teaching provided by patients’ doctors, nurses, and other members of the multidisciplinary team.Background. Being told one has cancer requires patients to understand their disease and cope with physical and emotional aspects of their illness. Methods. The Cancer Awareness Resources to go (C.A.R.T.) Planning Committee identified the need to provide cancer patients expanded access to educational materials. Results. For those patients who find it helpful to use booklets and medical pamphlets as an information source, having resources readily available on a mobile cart in a busy waiting area allows each person to retrieve the information they want at their time of need. Conclusions. This supports the individualized teaching provided by patients’ doctors, nurses, and other members of the multidisciplinary team.