Using pictographs to enhance recall of spoken medical instructions II.

The first study in this series [Houts PS, Bachrach R, Witmer JT, Tringali CA, Bucher JA, Localio RA. Patient Educ. Couns. 1998;35:83-8] found that recall of spoken medical instructions averaged 14% but that, when pictographs (drawings representing the instructions) accompanied the spoken instructions and were present during recall, 85% of medical instructions were remembered correctly. Those findings suggested that spoken instructions plus pictographs may be a way to give people with low literacy skills access to medical information that is normally available only in written form. However, there were three important limitations to that study: (1) the subjects were literate and perhaps literate people remember pictograph meanings better than people with low literacy skills; (2) only short term recall was tested and, for medical information to be useful clinically, it must be remembered for significant periods of time and (3) a maximum of 50 instructions were shown in pictographs, whereas managing complex illnesses may require remembering several hundred instructions. This study addresses those limitations by investigating 4-week recall of 236 medical instructions accompanied by pictographs by people with low literacy skills. Subjects were 21 adult clients of an inner city job training program who had less than fifth grade reading skills. Results showed 85% mean correct recall of pictograph meanings immediately after training (range from 63 to 99%) and 71% after 4 weeks (range from 33 to 94%). These results indicate that people with low literacy skills can, with the help of pictographs, recall large amounts of medical information for significant periods of time. The impact of pictographs on symptom management and patient quality of life remains to be studied.

Problem-solving cancer care education for patients and caregivers.

PURPOSE: A program evaluation was conducted to explore the potential effects of a 90-minute problem-solving education session for persons with advanced cancer and their families. DESCRIPTION OF PROGRAM: Patients with advanced cancer and their families, who were visiting a tertiary-care outpatient setting, were invited to attend a 90-minute individualized educational session that taught basic problem-solving principles using a cognitive-behavioral framework. Pre-education and posteducation data were collected about the confidence of participants in providing care, their feelings about being informed about resources, and their perceptions of their problem-solving ability. RESULTS: At baseline, most participants reported low confidence about their ability to provide cancer care and felt uninformed about community resources, but they viewed themselves as moderate-to-good problem solvers. Forty-two educational sessions were delivered to 49 caregivers and 40 patients. Two months later, participants reported feeling more informed about community resources and achieved higher posteducation scores for problem-solving ability. More caregivers than patients reported that reading The Home Care Guide for Cancer made a great deal of difference in their approach to home care. CLINICAL IMPLICATIONS: Most educational sessions for families affected by cancer focus on delivering information, not on building skills. These findings suggest that a one-on-one educational session that teaches problem-solving skills can be successfully delivered in a busy clinic setting. Family caregivers are especially likely to benefit from this program.

Using pictographs to enhance recall of spoken medical instructions.

Pictographs have been used in nonliterate societies to help people remember spoken instructions and, today, they could be used to help nonliterate people remember spoken medical instructions. This study tested the hypothesis that pictographs can improve recall of spoken medical instructions. Twenty-one junior college subjects listened to lists of 38 actions for managing fever and 50 actions for managing sore mouth. One of the action lists was accompanied by pictographs during both listening and recall while the other was not. Subjects did not see any written words during the intervention and, therefore, relied entirely on memory of what they heard. Mean correct recall was 85% with pictographs and 14% without (P < 0.0001) indicating that pictographs can enhance memory of spoken medical instruction--often to a very high level. For this technique to be clinically useful, further research is needed on how to achieve accurate recall of large amounts of medical information for long periods of time by nonliterate patients. By viewing illiteracy as a memory problem, the large body of research on learning and memory can be utilized in designing education materials for this group.

Take-home informed consent for intravenous contrast media: do patients learn more?

RATIONALE AND OBJECTIVES: In 1978, Morrow et al published the results of a simple technique for raising radiation oncology patients' levels of awareness about medical options. They reported that providing written information at least 24 hours in advance was an effective tool for increasing the baseline knowledge in this patient group. However, Morrow's cohort consisted exclusively of cancer patients receiving radiation therapy. The authors of this article are concerned with whether the encouraging results reported by Morrow are reproducible when applied to patients awaiting invasive radiologic procedures. METHODS: One hundred sixty consecutive outpatients awaiting contrast were block randomized into one of eight groups based on age, sex, and previous contrast exposure. For each group, half were given their consent form at least 24 hours prior, and the other half at the time of their procedure. All patients were tested at the time of their procedure to evaluate knowledge retention. RESULTS: Comparison between the two study groups showed no overall statistically significant differences either in knowledge (experimental group 4.7 +/- 1.32 versus 4.38 +/- 1.30 control group) or level of satisfaction. Additionally, individuals experienced with contrast failed to outperform those who had never previously been given contrast. There is no significant difference in the performance between the two sexes regardless of group. CONCLUSIONS: The providing of information 24 to 72 hours in advance of an invasive procedure does not have a beneficial effect over just providing the same information at the time of the study.

The prepared family caregiver: a problem-solving approach to family caregiver education.

Early hospital discharges, greater reliance on outpatient care, and the growing prevalence of chronic diseases has increased the demands on family members who care for patients at home. Family caregivers need information and training to insure that patients' needs are met and that home care is coordinated with that of health professionals. We propose a prescriptive problem-solving model for how care should be managed at home and for the kinds of information and training family caregivers should receive. The Prepared Family Caregiver model, which is summarized in the acronym COPE (Creativity, Optimism, Planning, and Expert information), teaches family caregivers how to develop and carry out orderly plans which address both medical and psychosocial problems and are coordinated with care plans of health professionals. The model is based on extensive research on problem-solving training and therapy. It empowers family members and patients for coping with illness and can help to moderate caregiver stress.

Interactive method of informing patients of the risks of intravenous contrast media.

PURPOSE: To evaluate interactive computer-based informed consent for use of contrast material versus the same information in a written format. MATERIALS AND METHODS: Patients (n = 160) referred for radiologic examination with intravenous contrast material were block randomized (sex, age, and previous exposure to contrast material) into two groups and were provided either written or computer-based (video) informed consent. RESULTS: The female patients in the video group scored better on the test than those in the group with the written consent form. Male patients attained equivalent scores with both types of consent. The video took an average of 1.6 minutes longer to complete, probably because the majority of patients chose to be informed of every risk of intravenous contrast material. CONCLUSION: This project demonstrates that a video format for informed consent before use of intravenous contrast material offers a good alternative to the written consent form.

The effect of informed consent on the level of anxiety in patients given i.v. contrast material.

OBJECTIVE: A common reason given for not obtaining informed consent before the use of IV contrast material is that the anxiety created by informing patients of potential reactions will increase the possibility of their occurring. However, the idea that this is possible is debatable, and no study of this subject has used a standardized anxiety index. Accordingly, using the State-Trait Anxiety Inventory, we assessed the anxiety level among patients about to have an IV contrast procedure and measured the effect of informing them of the risks associated with the use of contrast material. SUBJECTS AND METHODS: Approximately 2050 adult outpatients at three separate medical centers were solicited for participation in this study. Each of the 1251 patients who volunteered to participate was placed into one of six groups. The majority were patients who were awaiting the injection of either ionic or nonionic contrast material and who were or were not informed of the risks associated with the use of IV contrast material. The last two groups were generally healthy outpatients reporting for routine X-rays who were not awaiting IV contrast administration but who were informed of the risks associated with the use of ionic and nonionic contrast material. Each patient informed of the risks was asked to read a standardized consent form, and all patients completed a standardized anxiety index. RESULTS: Patients who were informed of the risks associated with IV contrast material did not have measurably increased anxiety, and they did not have an increased prevalence of adverse reactions. Indeed, the only patients who had statistically significant increased anxiety compared with the other groups were among those awaiting the injection of ionic contrast material who were not informed of the risks (p = .04). The majority (51-78%) of patients in all six groups had measurable elevated anxiety scores. CONCLUSION: We conclude that it is not justified to fail to obtain informed consent in order to avoid anxiety-induced adverse reactions to IV contrast material. The majority of patients awaiting injection of IV contrast material have measurable increased anxiety levels regardless of whether they are informed of its risks.

Importance of evaluating the context within which notification occurs.

Workers' response to notification about health effects from exposure to toxic materials is determined not just by the content of the message but also by the "context" within which notification occurs, that is, the workers' prenotification knowledge, attitudes, and experiences concerning environmental health risks in general as well as the health problem that is the subject of the notification. In many cases, workers already have a high level of awareness of environmental health issues and are also aware that their work environments could be bad for their health, before receiving official notification of a particular health risk. This is one reason why worker notification programs often have limited impacts on the workers' health behaviors. To understand this process, researchers should assess workers' baseline attitudes and behaviors and study how they affect response to notification. Persons conducting notification programs should evaluate workers' prenotification attitudes, knowledge, and behaviors, and use this information in planning notification efforts.

Patients' attitudes toward informed consent for intravenous contrast media.

OBJECTIVES: To assess patient attitudes concerning informed consent and the risks of ionic and nonionic contrast material, 1,197 completed questionnaires were obtained from individuals either awaiting contrast injection or waiting for other services. METHODS: Six different questionnaire formats were administered, including two detailing the specific risks of ionic and nonionic contrast, respectively. Different questionnaire formats were used to assess whether the severity or the probability of adverse consequences had more influence on a patient's desire for information. Two questionnaires evaluated the effect of comparing medical risks to equivalent risks from everyday nonmedical activities. RESULTS AND CONCLUSIONS: Regardless of questionnaire format and the severity of potential risk, the large majority of individuals want some information before contrast injection, and approximately half view such information as essential. Individuals reacted more to the probability of a potential reaction than its severity, and to items ordered toward the end of a particular questionnaire than at the beginning.

A decision-theoretic evaluation of early stopping rules.

We consider the decision-theoretic evaluation of early stopping rules for clinical trials. We describe a hypothetical phase III, two-arm trial with interim analysis, modelling it as a decision problem. We present methods for constructing a group-sequential test that is optimal for a given utility and prior distribution, and for determining a utility and prior under which a given test is optimal. Using our methods, we construct optimal tests for utilities and priors representing a variety of perspectives: a view that seeks to maximize the long-run response rate, a view that seeks to maximize the chance of a correct decision, and a personal view elicited from a medical oncologist. Characteristics of the optimal rules are sensitive to the input utilities and priors, and their critical values and sampling properties can differ markedly from those of group-sequential tests. We also compute utility functions and priors under which some standard group-sequential stopping rules are optimal. Our results suggest that the group-sequential tests, considered as decision procedures, imply a symmetry in the decision problem that is inconsistent with the response-rate perspective. We conclude that decision theory is a useful device for illuminating the sometimes conflicting goals of clinical research, and that the use of decision theory in designing clinical trials could lead to marked changes in statistical criteria for early termination.

Quality of life and patients with cancer: a comparative study of patient versus physician perceptions and its implications for cancer education.

A group of 300 matched pairs of adult patients with cancer (PWC) and their physicians were interviewed concerning the effects of disease and treatment on the patients' quality of life (QL). Patients were asked to rate specific QL factors that concerned them personally, while physicians were asked to evaluate the QL concerns of a hypothetical patient population exhibiting characteristics and diagnoses similar to those of their matched patients. The results indicated that physicians failed to recognize age as a factor having a direct impact upon the QL of their patients. Specifically, physicians estimated that elderly PWC, rather than young PWC, experienced more problems in four out of five QL categories, while in actuality younger patients reported more difficulties in all five categories when compared to their older counterparts. These data suggest that physicians should become more sensitive to the individualized, personal nature of their patients' QL and the factors that may shape or modify it. Implications for cancer education suggest a focus upon determining specific PWC needs as opposed to teaching general QL problems. Students should also be taught not to assume that all PWC experience the same QL concerns; rather, students should be taught to develop a specific history seeking to determine these needs. Finally, educators and students should recognize that young PWC apparently have more difficulty with their disease and its therapy than older PWC.

Effect of pregnancy during TMI crisis on mothers' mental health and their child's development.

Five years after the Three Mile Island nuclear accident, the mental health of women who had been pregnant and living within 10 miles of Three Mile Island at the time of the accident was similar to that of women from the same area who became pregnant after the accident. Ratings of the development of the two groups of children when they were 5 years old were also similar. However, women who were pregnant during the crisis and had been "extremely disturbed" about their pregnancies rated their children's health as poorer than did the women who were pregnant later.

Using a state cancer registry to increase screening behaviors of sisters and daughters of breast cancer patients.

The Pennsylvania Cancer Registry was used to contact breast cancer patients and, through them, their adult sisters and daughters. The sisters and daughters were counseled concerning their higher than average risks for breast cancer and their need for mammography and breast self-examination. Results showed a 9 percent increase in mammography and a 10 percent increase in breast self-examination rates for the counseled over control group. Costs were $49 per counseled sister or daughter indicating a need to increase cost effectiveness before implementation is practical.

Information needs of families of cancer patients: a literature review and recommendations.

This paper reviews evidence on the kinds of information needed by family members of cancer patients, discusses why families frequently lack needed information, and suggests strategies for meeting their information needs. Studies reviewed show that families' needs for information are substantial and that a large percentage of family members feel that these needs have not been adequately met by health care providers. This lack of needed information negatively affects the patient's care as well as the physical, psychological, and social well-being of family members. Strategies for addressing this problem include wider distribution of generic information about cancer and treatments to family members as well as developing standard professional procedures for making information about a patient's clinical condition available to family members.

The association between students' research involvement in medical school and their postgraduate medical activities.

The authors examined the impact of students' research involvement during medical school on their postresidency medical activities. The three medical schools involved--The Pennsylvania State University College of Medicine (PSU), The University of Connecticut School of Medicine (UCONN), and The University of Massachusetts Medical School (UMASS)--have nearly indistinguishable applicant, matriculant, and curriculum profiles. However, at PSU a research project is a curriculum requirement for students who did not do medical research prior to entering medical school. Questionnaires were sent to all graduates from the classes of 1980, 1981, and 1982. A total of 567 graduates completed the questionnaires, an overall response rate of approximately 76%. Medical school research experience was reported by 83% (183) of the PSU graduates, 34% (52) of the UCONN graduates, and 28% (54) of the UMASS graduates. When compared on a school-by-school basis, the graduates from the three schools did not differ with respect to residency specialty training, fellowship training, academic appointments, career practice choices, or postgraduate research involvement. However, when all the graduates studied were examined as a single group, medical school research experience was found to be strongly associated with postgraduate research involvement.

Unmet needs of persons with cancer in Pennsylvania during the period of terminal care.

A stratified random sample of recent cancer deaths was drawn from the Pennsylvania death registry, and 433 family members or close friends were interviewed concerning unmet needs during the last month of life. It was estimated that 72% of persons who died of cancer in Pennsylvania experienced at least one unmet service need during this period. The most frequently reported was help with activities of daily living, estimated at 42% of cancer deaths, involving over 11,000 persons each year in the state. There were significantly more unmet needs during the terminal period, compared with just after diagnosis, in activities of daily living, obtaining health care, transportation, and problems with medical staff. Our findings indicate a need to increase a broad range of support programs during the terminal period, especially of home-care services.

Effects of informing workers of their health risks from exposure to toxic materials.

This study compared the mental health, attitudes, and smoking behaviors of 133 workers who had been informed of health risks from exposure to toxic materials on the job with 137 workers who worked in similar conditions but who had not been told that their health was at risk because of exposure to toxic materials. The informed workers reported more health problems than controls, but there were no significant differences between the informed and uninformed groups in mental health, attitudes toward health hazards in or outside of the workplace, or in smoking rates. Ninety percent of all respondents felt that exposed workers definitely should be told of their health risks. These findings indicate little psychological risk from informing workers about their risks because of exposure to toxic substances and a strong desire on the part of workers to be informed.

A comparison of problems reported by persons with cancer and their same sex siblings.

Problem reporting rates of 180 persons with cancer (PWC) were compared with those of their closest in age same sex cancer-free siblings living outside their households for the same time periods. PWC had significantly higher reporting rates for physical, activities of daily living, nutrition, and emotional problems and a significantly lower rate for family problems. Sibling problem reporting rates, which indicate the likelihood that PWC would have experienced similar problems without a diagnosis of cancer, were highest for physical, emotional, employment, and family problems suggesting that noncancer factors are especially likely to play a role in those types of problems. Regression analyses showed that female and younger PWCs tended to report more problems than their siblings suggesting that they were more affected by cancer and its treatments than were other types of PWC.

Unmet psychological, social, and economic needs of persons with cancer in Pennsylvania.

Six hundred twenty-nine persons with cancer (PWC) selected from the Pennsylvania Cancer Registry plus 397 nonprofessional (support) persons involved in their care (SP) were interviewed to determine their views of the unmet psychological, social and economic needs of PWC. The most frequently mentioned unmet need was for help in dealing with emotional problems (estimated at 25% of PWC state-wide). Other unmet need estimates ranged from 14% for financial to 4% for transportation, with 59% of PWC reporting at least one unmet need. Characteristics of PWC reporting unmet needs included being younger, a history of emotional problems, a chronic illness in addition to cancer, more advanced stage at diagnosis, and a diagnosis of lung cancer. The percent of PWC and CP reporting unmet needs were very similar. These findings indicate that more effective screening for psychosocial problems and referral to supportive services is needed.