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.

A new psychosocial screening instrument for use with cancer patients.

The authors performed a principal components factor analysis on the 18-item Brief Symptom Inventory (BSI-18), a new brief screening inventory. The factor analysis, in which four factors were specified, is consistent with findings in a previous community sample. The study sample consisted of 1,543 cancer patients who completed the full BSI as part of their entry into care at a regional cancer center. The reliability of the BSI-18 was determined based on the calculation of the internal consistency, mean item scores, and correlations with the total score of the BSI. In addition, sensitivity and specificity was calculated to determine the ability of the BSI-18 to discriminate positive and negative cases. The BSI-18 is a shortened version of the BSI that can serve as a brief psychological screening instrument. The BSI-18 can be incorporated into outpatient clinics to prospectively and rapidly identify cancer patients with elevated levels of distress who are in need of clinical interventions. Early identification of distress with appropriate interventions can reduce distress, enhance quality of life, and decrease health care costs.

The prevalence of psychological distress by cancer site.

PURPOSE: The goal of this project was to determine the prevalence of psychological distress among a large sample of cancer patients (n=4496). In addition, variations in distress among 14 cancer diagnoses were examined. PATIENTS AND METHODS: The sample was extracted from a database that consists of 9000 patients who completed the Brief Symptom Inventory as a component of comprehensive cancer care. Relevant data points for each case included age, diagnosis, gender, insurance status, marital status, race and zip code. Simple frequencies, percentages, measures of central tendency and variability were calculated. In addition, a univariate and multiple regression analysis was used to examine the relationships of these relevant variables to psychological distress. RESULTS: The overall prevalence rate of distress for this sample was 35.1%. The rate varied form 43.4% for lung cancer to 29.6% for gynecological cancers. While some rates were significantly different, diagnoses with a poorer prognosis and greater patient burden produced similar rates of distress. Pancreatic cancer patients produced the highest mean scores for symptoms such as anxiety and depression, while Hodgkin's patients exhibited the highest mean scores for hostility. CONCLUSIONS: These results offer vital support for the need to identify high-risk patients through psychosocial screening in order to provide early intervention. To simply perceive cancer patients as a homogeneous group is an erroneous assumption. Failure to detect and treat elevated levels of distress jeopardizes the outcomes of cancer therapies, decreases patients' quality of life, and increases health care costs.

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.

Reintegration after bone marrow transplantation.

OBJECTIVES: This study examines the problems of bone marrow transplantation (BMT) survivors in returning to "normal" life in the community after BMT. MATERIALS AND METHODS: Before being released from The Johns Hopkins Oncology Center, 84 recipients of BMT were interviewed regarding their quality of life and psychosocial adaptation. Survivors were reinterviewed at 6 months, and at 1 year post-BMT, producing considerable qualitative data regarding their problems in living. Eighty-four patients who had received BMT completed qualitative interviews and standardized measures before treatment, before the return home, and at 6 and 12 months post-BMT. The interviews were subjected to a content analysis methodology to establish units and categories to examine the body of material. RESULTS: Content analysis of these interviews from the first year after BMT identified three areas of psychosocial morbidity; 1) physical problems, which included fatigue, appearance, troubles in eating, and physical restrictions; 2) psychological problems, which included fears about the future, sense of loss of control, anxiety, and depression; and 3) community reintegration problems, which included difficulty in returning to former social roles, separation from home, family, and friends, difficulty in resuming social relations, dealing with stigmatization, problems with family and children, and financial and employment difficulties. CONCLUSIONS: Identification of these problems for BMT survivors can be used to guide the development of specific materials and services to prepare recipients of BMTs and their families for life after the transplant. These qualitative results can also be used to direct the development of assessment tools to identify potential patient and family problems.

Screening to predict complicated grief in spouses of cancer patients.

OBJECTIVES: Grief is the expected reaction to the death of a family member or close friend and is accompanied by substantial distress for almost everyone who experiences it. For some the grief response becomes complicated. This pilot study sought to identify individuals at high risk for complicated grief, by 1) examining the relationships that exist between family functioning before the death, psychological distress, and the grief reaction of a family after the death, and 2) presenting the use of screening with standardized measures to identify those at risk. MATERIALS AND METHODS: This pilot study examined the relationships between family functioning, psychological distress, and grief reaction. A cross-sectional design was used and the instrument included the Family Adaptability and Cohesion Evaluation Scale (FACES III), the Brief Symptom Inventory (BSI), and the Texas Revised Inventory of Grief (TRIG). Significant relationships were identified between the level of family functioning, psychological distress and grief reaction. Depression, anxiety, and general distress were significantly correlated with the two subscales of the TRIG. CONCLUSIONS: The findings clearly illustrate the merit of psychosocial screening of spouses and suggest the possible benefits of screening before the patient's death, using FACES III and the BSI to identify which spouses are at risk for complicated grief reactions.

Recruitment of underserved women for breast cancer detection programs.

PURPOSE: The purpose of this correlational, nonexperimental study was to survey a sample of uninsured/underinsured women entering a no-cost, state-funded breast cancer screening program to identify factors that might enhance existing recruitment strategies and adherence to breast cancer screening. OVERVIEW: Inadequate access to breast cancer screening contributes to the high morbidity and mortality that have been documented in low-income American women with breast cancer. Two hundred and four participants in a no-cost cancer screening program at the Johns Hopkins Oncology Center's East Baltimore Community Health Program in Maryland were surveyed by telephone to identify methods to enhance recruitment strategies. The survey solicited information in areas such as demographics, healthcare practices, and recruitment sources. Knowledge about breast cancer and its treatment, perceived control over health matters, and the practice of preventive measures were low in this group. Based on the data obtained, recruitment strategies better tailored to this population were developed and implemented. CLINICAL IMPLICATIONS: Recruiters and clinicians must understand that for impoverished women, day-to-day survival takes precedence over most other issues. The possibility of a condition that may cause illness or death 10 to 20 years from now is of less importance than obtaining food, clothing, and shelter today. This program demonstrates that services such as transportation and child care are important elements of care for this population. Culturally sensitive recruitment strategies, personalized care, and vigilant follow-up are important requisites to breast cancer screening programs. A multidisciplinary team effort is critical in bringing together the elements required for a successful screening program.

Psychological distress among adult patients being evaluated for bone marrow transplantation.

A sample of 437 patients being evaluated for bone marrow transplantation (BMT) completed interviews and questionnaires to assess their psychosocial adjustment. Nearly a third of the patients (31%) showed some degree of depression on the Center for Epidemiologic Studies Depression Scale. Scores on the Profile of Mood States Scale also indicated that these BMT candidates were experiencing a high level of psychological distress. This distress was found to be predicted by low scores on the Self-Rated Karnofsky Performance Scale and on scales measuring mastery and dispositional optimism. The value of assessing the levels of psychological distress and psychosocial resources of patients being evaluated for BMT and for providing necessary psychiatric interventions are discussed.

Empirically selected instruments for measuring quality-of-life dimensions in culturally diverse populations.

We describe a process for developing and testing the cultural equivalence of quality-of-life (QOL) instruments that may be used across culturally diverse populations. QOL instruments dealing with satisfaction with various life domains, psychological distress, and physical health and functioning were reviewed by African-American and Hispanic community advisory boards, translated into Spanish and back-translated to ensure translation adequacy, administered to samples of 100 patients from each of the ethnic minority populations by indigenous nurse interviewers, and examined for psychometric adequacy. Ten QOL measures showed adequate reliability and validity for further use in the assessment of QOL with African-American and Hispanic patients. Three other measures failed to meet the defined standards. A dimension shown to be particularly difficult to address across culturally diverse groups is family functioning. Procedures for achieving cultural equivalence of QOL measures have been shown to be practical and productive. Measures are identified that may be used with some confidence to assess varied dimensions of QOL with culturally diverse groups.

Quality of life and social support of patients being evaluated for bone marrow transplantation.

A sample of 437 patients completed self-report measures of quality of life and social support while they were being evaluated for bone marrow transplantation (BMT) at The Johns Hopkins Oncology Center. Generally, the candidates showed reasonably high levels of quality of life (QOL) on the Satisfaction with Life Domains Scale (SLDS), their present ranking on the Cantril Self-Anchoring Ladder of Life, and their scores on the Bradburn Positive Affect Scale. The level of QOL of these candidates for transplant was significantly related to their level of social support. Both availability and adequacy of social support for these transplant candidates were found to be significantly related to QOL as measured by the SLDS. Availability of social support as measured by patient membership in religious and other organizations was significantly related to Positive Affect but not Negative Affect. The Family APGAR and Relational Support Scales measures of social support were significantly correlated with both Positive and Negative Affect.

Patients' and healthcare providers' opinions regarding advance directives.

PURPOSE/OBJECTIVES: To gain a better understanding of patients' and healthcare providers' preferences regarding when, how, and by whom advance directive information should be given and to explore the nursing role in advance directives. DESIGN: A qualitative study using focus group methodology. SETTING: A National Cancer Institute-designated comprehensive cancer center located within a large, university-affiliated, tertiary care hospital in the northeastern United States. SAMPLE: Two samples participated in the study: eight adult ambulatory patients with cancer and 15 healthcare providers (4 physicians, 10 nurses, and 1 social worker). METHODS: Separate patient and provider focus groups were conducted in private rooms by experienced facilitators using an interview guide with questions based on the literature, the hospital's advance directive materials, and the investigators' experience; sessions were audio-taped, transcribed, and analyzed using qualitative data analysis techniques. FINDINGS: Patients and healthcare providers discussed focus group questions and commented that advance directive discussions should be provided early in the treatment or illness, presented in a short and simple format with reading materials at a level appropriate for the patient, and continued throughout the illness with those who desire follow-up. Nurses, doctors, social workers, or a designated/trained advance directive person were individuals that the patients identified as people with whom they could have advance directive discussions. CONCLUSIONS: Results suggested that advance directive information should be given prior to hospital admission, be provided in a variety of formats, and that nurses, social workers, doctors, or designated staff representatives could all be part of the advance directive process. NURSING IMPLICATIONS: Nursing roles should include early assessment of patients to determine needs for discussion, advocacy on behalf of patients, and provision of information. Future research should examine use of specific personnel for facilitating advance directives and compare different formats for presenting advance directive information to patients.

Quality of life of bone marrow transplant long-term survivors.

Adult survivors of bone marrow transplantation not in life threatening relapse were surveyed with a mailed questionnaire 6-149 months after transplant. Of 171 eligible patients, 157 were contacted and 135 (86%) responded. Survivors showed a high degree of overall satisfaction with major life domains but were least satisfied with their bodies, level of physical strength and ability to attain sexual satisfaction. Positive and negative affect were higher than general population samples and less tension, fatigue, confusion and depression were displayed than comparison groups. Multiple regression analyses showed that self-esteem and level of current physical functioning made significant contributions to predicting multiple quality-of-life outcomes. Previous graft-versus-host disease was predictive of low satisfaction with life domains. Lack of social support was predictive of anger and Negative Affect. Transplantation at a younger age was related to overall life satisfaction, vigor and Positive Affect. Women showed more Negative Affect than men. Time since transplant related to level of confusion among patients. Most survivors reported high levels of perceived quality of life on multiple indicators. Self-esteem, current level of physical functioning, social support and age at bone marrow transplantation were predictive of quality of life outcomes.

Sexual satisfaction in survivors of bone marrow transplantation.

Of 157 (80%) adult survivors of bone marrow transplantation, 126 responded to a mailed survey 6-149 months after transplant concerning their ability to attain sexual satisfaction. Sixty-five percent of the subjects indicated some degree of sexual satisfaction (with 29% indicating a high degree of satisfaction). Thirteen percent were neutral and 22% were dissatisfied. Gonadal physiological disturbances were present in most subjects as a result of intensive treatments. Fifty-seven percent of women were receiving estrogen replacement, and only 40% had regular menses. Twenty-four percent of men had difficulty with erections and 13% had ejaculatory dysfunction. For men, difficulties with erection (r = 0.54, p less than 0.001) or ejaculation (r = 0.52, p less than 0.001) were associated with inability to attain sexual satisfaction. For women, loss of menses (r = 0.34, p = 0.008) was associated with inability to attain sexual satisfaction. Although few women had abnormally low serum estradiol (even with hormonal supplementation), and none of the 43 men tested had abnormally low serum testosterone, sexual satisfaction correlated with serum levels of estrogen in women (r = 0.42, p = 0.04) and serum testosterone in men (r = 0.28, p = 0.04). Forty-two subjects rated their level of sexual satisfaction before and after transplant. Post-transplant satisfaction was not associated with pretransplant satisfaction (r = 0.07, p = 0.67).(ABSTRACT TRUNCATED AT 250 WORDS)

Family dysfunction and the cancer patient: early recognition and intervention.

Cancer affects the entire family, not just the patient. Dysfunctional family systems can be assessed by looking for recurrent patterns of maladaptive processes that exclude other coping mechanisms. Intervening to ameliorate the situation in such families involves development of a plan to restore equilibrium wherever possible; when appropriate, a mental-health referral may be needed for families with severe dysfunction. A physician must know how to assess and appropriately intervene in dysfunctional family systems, both when support services are and are not available for assistance. To explain recognition and anticipation of the early signs of family dysfunction to the practicing oncologist, Olsen's Circumplex Model of family functioning is presented as a theoretical frame for assessment and intervention.

Emotional adaptation over time in care-givers for chronically ill elderly people.

Thirty-two care-givers of persons with Alzheimer's disease and 30 care-givers of persons with recurrent metastatic cancer were interviewed three times over a 2-year period. Both groups showed a decline in anxiety and negative mood while dementia care-givers also experienced a decline in anger. A multiple regression analysis revealed that care-giver neuroticism, self-reported low strength of religious beliefs and anger explained 54% of the variance of the negative affect balance score at 2-year follow-up while higher number of social contacts at index interview and strong self-reported religious faith explained 43% of the variance of positive affect balance.

An efficient method for psychosocial screening of cancer patients.

In high-volume outpatient areas, using Weisman and Worden's Omega instruments for psychosocial screening of cancer patients is not feasible. This study of 30 newly diagnosed patients compared the accuracy of the Omega instruments and the Brief Symptom Inventory (BSI) in identifying patients with high levels of distress at the time of diagnosis as well as in predicting future distress. A significant level of agreement was found between the BSI and the Omega instruments. Both instruments correctly identified the future distress of 16 of 19 patients (84.2%), but the BSI screens patients in one-fourth the time and at one-third the cost. These results support our decision to employ the BSI as a screening tool in an outpatient setting.

Out-patient detoxification of patients addicted to sedative-hypnotics and anxiolytics.

Due to the risk of seizures and other potentially life threatening complications, it has been accepted practice to detoxify patients addicted to sedative-hypnotics or minor tranquilizers in an in-patient setting. Using the procedures for patient selection and management described below, we have been able to detoxify as out-patients approximately two-thirds of 69 patients who were found to be in need of detoxification. Out-patients experienced no serious complications during or immediately following detoxification and were not significantly less likely than in-patients to complete treatment. We present here some guidelines which will assist practitioners in identifying patients who are appropriate for out-patient detoxification and describe approaches to patient management that have proven effective.