PREVENTIVE
MEDICINE
14, 801-818 (1985)
Cancer
Patient
BARBARA RIMER, *Fox
Chase
Cancer
Education:
Reality and Potential’
DR.P.H.,**~ MARTHA BERNARD GLASSMAN,
Center, 430 Rhawn America, Ltd.,
Street, Amber,
K. KEINTZ, Sc.M.,*
AND
M.A.t
Philadelphiu, Pennsylvaniu
Pennsylvania 19002
19111,
and flMS
Cancer now attacks one in three Americans, resulting in one in six deaths. Yet, until recently, few patient education programs were directed toward cancer patients. This review examines the status of cancer patient education and suggests future directions. We focus on several aspects of cancer patient education, including needs assessments and programs in treatment, rehabilitation, and continuing care and evaluation. The most comprehensive patient education programs are those directed toward patients in active treatment: one of its tasks is to help patients manage treatment side effects. A major component of rehabilitation programs is counseling patients to help them cope with the effects of cancer. Many patient education programs have performed evaluations; most reflect difficulties in one or more areas, such as selecting appropriate measures or accruing adequate sample sizes. We recommend several directions for the future, including the use of appropriate measurement tools, adequate sample sizes, multimodality programs with incorporation of psychological techniques such as relaxation training and guided imagery, and assessment of the impact of patient education programs on costs. 0 1985 Academic Press, Inc.
INTRODUCTION
In 1984,870,OOO Americans were diagnosed as having cancer; in the same year, 403,300 deaths were attributed to cancer. One in three Americans will develop cancer; one in six will die from it (1). The increasing proportion of older Americans will bring a higher incidence of cancer, because 50% of cancers occur in people 55 years of age and older (64). The profound physiological, psychological, and economic consequences of the disease affect the individual, the family, and a society that increasingly is troubled by the high cost of medical care. It is surprising, therefore, that more attention has not been paid to cancer patient education. Green has noted that, in the broader context of patient education, cancer has lagged behind other diseases in the attention that health educators and other behavioral scientists have devoted to the subject. Even within the area of cancer education, patient education has been overshadowed by prevention and public education about cancer (28). In this review, we examine where cancer patient education has been, where it is, and in what direction it appears to be headed. In preparation for the review, four data bases were searched for relevant articles published between 1970 and 1985: Index Medicus, International Nursing Index, Current Awareness in Health Education, and Bibliographic Index of Health Education Periodicals. ’ Supported by Grant NIH P50 CA34856-01. 2 To whom reprint requests should be addressed. 801 0091-7435/85 $3.00 Copyright D 1985 by Academx Press, Inc. All rights of reproduction in any form reserved.
RIMER,
WHY IS CANCER
KEINTZ,
PATIENT
AND
GLASSMAN
EDUCATION
DIFFERENT?
Cancer patient education has been defined as a series of structured or unstructured experiences designed to assist patients to cope voluntarily with the immediate crisis response to their diagnosis, with long-term adjustments, and with symptoms; to gain needed information about sources of prevention, diagnosis, and care; and to develop needed skills, knowledge, and attitudes to maintain or regain health status (38). This represents an expansion of Green’s definition of health education as any designed combination of methods to facilitate voluntary adaptations of behavior conducive to health (29). The National Cancer Institute has identified several issues that are special to cancer patient education. Most notably, cancer is many diseases, each imposing different educational requirements. Also, cancer often results in social isolation, is equated with pain and death, may produce a sense of loss of control, imposes a severe financial strain, and its treatment may cause life-threatening side effects (76). In addition, because cancer treatment usually implies treatment on a research protocol, there are problems of obtaining informed consent and of explaining to patients complex medical information with often unclear risk-benefit ratios (69, 70). Haney (30) observed that, perhaps unlike other chronic diseases, cancer patients may be unaware of the progress of the disease, both for better and for worse. Lewis (52) argued that in cancer, the family matters to an unusual extent. The interactional environment generated by the family is known to affect the adaptation, self-care practices, and compliance of the patient. Both the National Cancer Institute’s patient education goals (76) and the Oncology Nursing Society’s Standards for Cancer Patient Education (62) identify a number of tasks for cancer patient education. These include helping patients (and their families) adjust to the disease, participate in treatment, carry out regimens, manage stress, recognize and control side effects, prevent social isolation and strengthen relationships with significant others, mobilize and manage resources, and adapt to a life of uncertainty. Several factors related to the disease and to the patient’s environment may hinder learning. Barriers related to the disease include fatigue, pain, nausea, and vomiting, all of which may be attributable to the disease’s progression, to the side effects of treatment regimens, or to both. Other factors that retard learning may be a consequence of emotional responses to the disease, including denial, anxiety, and fear. The extent and strength of a patient’s social support system also may facilitate or inhibit his/her capacity for learning. Researchers in other fields (6) have shown how powerful a variable social support is. While social support and other environmental factors have been inadequately studied with regard to cancer patients, there is some evidence that patient education programs using a group setting (37) or enhancing family support through the use of home visits (46) may increase program effectiveness. CANCER
PATIENT
EDUCATION
AS PART OF THE CARE PROCESS
Cancer control and care have been described as a continuum ranging from prevention, detection, and diagnosis to treatment, rehabilitation, and continuing care. Education for the diagnostic stage rarely is separated from that for the
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treatment stage. This review focuses on those stages that are most relevant to cancer patients: treatment, rehabilitation, and continuing care. As both the National Cancer Institute (76) and others (18) have noted, patient education is required for each of the stages, and patients have different educational wants and needs at different stages (35). During diagnosis, patients must know what tests will be performed, how much they will cost, how to prepare for them, and how the tests will make them feel. The research of Johnson et al. (40) shows that preparing patients in advance for uncomfortable procedures may alleviate some of the unpleasant side effects and, in some cases, reduce the dose of sedative needed. Miller and Mangan (57) have shown the effect of information and coping style in response to colposcopy, a diagnostic procedure for gynecologic cancer. The authors found that patients were less distressed when preparatory information was consistent with their coping styles. So called “blunters” (information avoiders) were less distressed with low information and, generally speaking, “monitors” (information seekers) were less aroused with higher levels of information. Optimally, the amount of information should be tailored to a patient’s coping style. Requisite to treatment itself is the patient’s informed consent to being treated. United States federal regulations (69) clearly specify what the patient must be told at the time consent is requested. Few patient education programs have been aimed at this point in the continuum. Treatment is the phase that has received the most attention from program developers and researchers alike. During treatment, patients require information about the specific treatment modality or modalities, such as chemotherapy, radiation therapy, and surgery. Patients undergoing surgery need additional preparation for the surgical and post surgical periods. One of the most pressing objectives of patient education is helping patients manage the side effects of treatment. Some of the most well-designed and carefully executed patient education programs (13, 21, 22) have been directed toward this phase. One treatment aspect that has been studied rarely is compliance. Lewis et al. (49) concluded that, while the evidence is scant, compliance does seem to be a problem for cancer patients. They cited at least three compliance problems that may affect patient survival: (a) patient refusal to participate in clinical trials; (b) missed appointments; and (c) administration of insufficient treatment dose, because patients cannot cope with side effects. They observed that deviations as small as &5% in dose and time have resulted in clinical failures, and they suggested a need for improved methods of studying compliance. Regimens to control the side effects associated with cancer treatment also must be followed closely if they are to be effective. Compliance may vary with the behavioral demands required by different aspects of a treatment regimen (67, 68). Rehabilitation and continuing care include enabling the patient to achieve optimal physical and psychological functioning and helping patients manage the consequences of the disease. Since it has been estimated that at least 60% of cancer patients experience chronic pain, one of the critical tasks of patient education for continuing care is helping patients manage this pain (8, 19, 36). Few patient education programs have been directed at rehabilitation and continuing care. For an increasingly large number of patients, there is remission, with attendant
804
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KEINTZ,
AND GLASSMAN
requirements for self-monitoring and medical surveillance. For example, breast cancer patients must be vigilant in practicing breast self-examination and in complying with a regular schedule of physician examination. Mullen (59) reviewed some of the problems and possibilities survivors face. Our searches of the literature have not identified any education programs directed at patients in remission, possibly because, until recently, cancer was almost invariably fatal. DEFINING PATIENTS’ NEEDS
Several needs assessments, varying in comprehensiveness, have examined cancer patients’ needs and the extent of their problems at different points along the cancer continuum. Other studies have been conducted to determine cancer patients’ status in several important areas of functioning, such as psychological adjustment and symptom distress. These studies are surveyed in this section and summarized in Table 1. In defining the needs of patients and setting the requirements for patient education programs, the studies we reviewed provide guidance, albeit with varying degrees of empirical authority. Study populations ranged from as few as 1.5 to as many as 256 cancer patients; they also varied with respect to the representation of different demographic groups and the rigor of the study process. The group size from which each study’s findings were drawn and additional study details are included in Table 1. Cancer’s effects were experienced more rapidly, and imposed more life restrictions, than even those of myocardial infarctions as shown by Driever and McCorkle (24) in a comparative study of lung-cancer and myocardial-infarction patients. Many cancer patients worried much of the time, often turning to their religious beliefs for support (11). Lauer et al. (45) found significant differences between what patients wanted to know and what nurses felt it was important for them to know. Patients wanted the facts about their diagnosis, how to control chemotherapy’s side effects, and how to perform self-care. The greater the patients’ uncertainty, the less their optimism; and the more complex they perceived their treatment to be, the more negative their feelings about their future (58). Patients and their relatives wanted to be given hope or, at least, honest information (82). The more-educated patients and their relatives were more likely to prefer this information in writing, but in general, patients wanted more information than they had been given (35). Younger patients, especially, wanted more information than they were given (14). Blumberg (7) found that cancer patients had many questions about clinical trials, and that many patients entering such trials had little understanding of what they entailed. Interviewed patients believed there was a need for a publication about clinical trials. In a needs assessment related to cancer patients’ knowledge, attitudes, and behaviors concerning cancer pain medications, Jones et al. (36) concluded that, while compliance with pain regimens was moderately high, patients had little awareness of the side effects associated with these regimens or how to manage them. In sum, while limited sample sizes associated with many of the reports point to the need for more investigation among larger groups, there is enough consistency among these studies to conclude that the importance of honest information
FORUM:
PATIENT TABLE
STUDIES DEFINING
Cain and Henke, (11) Cassileth (14)
1
PATIENTS’
Patient characteristics
Reference 1978
ef al., 1980
805
EDUCATION
NEEDS
Selected findings
50 outpatients (76% white; 68% married: 74% completed high school)
18% of patients worry all the time; 48% some of the time; 80% felt religious beliefs helped them
256 patients diagnosed 10 months
Significant increase (P < 0.05) in hopefulness for patients wanting to be active participants; younger patients wanted more information
an average of
Driever and McCorkle, 1984 (24)
15 lung cancer and 29 myocardialinfarction patients
Significant disease effect of cancer (P = 0.01) on patient status at 3 and 6 months; cancer patients had significantly more symptoms (P = O.OiIl) and life restrictions
Jones ef al., 1982 (35)
122 breast, melanoma, and colorectal patients; 45 relatives; 51 health professionals
66% of patients and 54% of relatives wanted additional written information; 42% wanted audiovisual programs; more years of education associated with desire for more written information
Jones ef al., 1984 (36)
82 outpatients prescribed pain medications (56% female; 59% 60 years or older)
Self-reported compliance with pain control regimens was high, but patients were unable to recall any side effects or how to manage them
Lauer et al., 1982 (45)
27 patients receiving chemo- or radiation therapy (55% female; 52% black; 33 nurses)
Significant differences nurse perceptions
Marks ef al., unpub. (55)
110 patients with hematologic malignancies (70% male; 48% Hispanic; 25% black; 59% unemployed or retired)
As age increased, expectations about the effects of compliance lowered. Other findings about socioeconomic characteristics and perceptions about severity and control
Mishel ef al., 1984 (58)
54 newly diagnosed gynecologic patients
Uncertainty negatively correlated with optimism (r = 0.50); significant association between perceived complexity of treatment and negative expectations of the future
Young-Brockopp,
61 inpatients diagnosed with lifethreatening illness
Need for hope and honest information perceived as most important by patients
(821
1982
in patient and
about the disease, its treatment, the management of treatment side effects, and what the future may hold, presented in a fashion appropriate to the patient’s sociodemographic characteristics, cannot be overstated. Finally, it is clear from the needs assessments that most patients want more information than they have been provided. TREATMENT
This section deals with the sequence of informational and instructional opportunities that occur during the treatment phase, including obtaining the patient’s informed consent, managing the treatment and its side effects, and meeting the need for more general knowledge about cancer. Table 2 summarizes the details
806
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KEINTZ,
AND
GLASSMAN
TABLE 2 STUDIES OF TREATMENT FOR CANCER Reference Informed consent Dodd and Mood, 1981
(23)
Patient characteristics 24 patients at research hospital and outpatient setting
Program
characteristics
Index card with drug and side-effect information; review of informed consent interview by oncology nurse
Managing the treatment regimen and its side effects Beck, 1979 (5) 47 inpatients on Oral care booklet and chemotherapy drugs individual teaching affecting the month
Selected findings Significant increase in recall of drug names by experimental group (P = 0.05); 71% accuracy rate for recall of lethal side effects for treatment subjects; 21% for control Significant improvement in oral care (P = 0.01) after program initiation: infections reduced 67%
Burish and Lyles, 1979 (9) Burish and Lyles, 1981 (10)
1 female patient with lymphoma
Relaxation training by a psychologist; 11 sessions
Reduction in frequency of vomiting and physiological arousal
16 patients receiving chemotherapy
Relaxation and guidedimagery training by a psychologist; 5 sessionsone pretreatment, 2 treatment, and 2 posttreatment
Cassileth et al., 1982 (13)
106 patients; 134 relatives and friends
4 audiovisual programs about cancer and cancer treatment
Significant reduction in anxiety (P = 0.0003) and nansea (P = 0.006) for patients trained in relaxation. No difference between groups in frequency of vomiting. Relaxation training also reduced blood pressure (P = 0.002) Knowledge increased 38%; anxiety scores decreased significantly (P i 0.001). Education and race contributed to knowledge scores
Champagne and Kane, 1980
8 patients with prostatic cancer on radioactive iodine therapy
Pamphlet at admission. Individual teaching during hospitalization
Dodd, 1982, 1983 (20, 21,
48 outpatients on chemotherapy
Pamphlets on drug information (DI) and sideeffect management (SEM). Control and 3 experimental groups (DI only, SEM only and DI + SEM)
Israel and Mood, 1982
36 patients on first course of radiation therapy (50% male; 58% black)
3 slide-tape programs on treatment procedures, side effects, and common emotional reactions shown prior to treatment
Knowledge of side effects increased 31% and of common emotional reactions 45%
Jacobs et al., 1983 (33)
81 patients with Hodgkin’s disease
Booklet about diagnosis, staging, treatment, and prognosis used alone or with 8 weekly group meetings
Significant reduction in anxiety (P = 0.02) and treatment problems (P = 0.009); reduced depression (P = 0.10) and life disruption (P = 0.08) for education group
Johnson, (37)
52 patients with newly diagnosed or recurrent cancer
8 structured group teaching sessions lasting 90 min each over a 4-week period
Significant increase in knowledge and meaningfulness and significant decrease in anxiety for treatment group
(16)
22)
(32)
1982
Patients eager to participate in postdischarge follow-up. High self-reported patient understanding Significant difference in selfcare knowledge (P < 0.01) and number of self-care behaviors (P = 0.01) between SEM groups and control and DI only groups
FORUM:
PATIENT TABLE
Reference
Patient characteristics
807
EDUCATION
2-Continued Program
characteristics
Selected findings
Levine et al., unpub. (46)
35 patients with hematologic malignancy (63% less than high school education; 31% Spanish speaking)
Interactive slide-tape on cancer chemotherapy; social support in home
Significant difference in full compliance (P = 0.005) between control and experimental groups; highly significant difference in appointment keeping (P = 0.0001) between study groups
Redd et al., 1982 (65)
6 female patients with documented anticipatory nausea and vomiting @NV) 24 patients receiving Doxorubicin therapy (75% 45 years or older)
3 individual sessions between psychologist and patient. Hypnosis was taught and induced
ANV controlled but returned when hypnosis was not used
Fact sheet after first therapy visit as adjunct to individualized teaching
Patients read and followed some of the instructions. Those who tried self-management instructions found them helpful
Satterwhite ef al., 1980 (72)
of the studies, while the narrative that follows synthesizes observations the studies’ strengths, weaknesses, and results.
based on
Informed Consent Once cancer has been diagnosed, the next step generally is treatment, which because of the experimental nature of most cancer care, usually begins with obtaining the patient’s statement of informed consent to the treatment protocol. The general topic of informed consent has been reviewed thoughtfully (4,47, 71). However, there have been few specific studies among cancer patients of the informed consent process or especially of interventions intended to improve that process. The literature that does exist clearly shows that truly informed consent is rarely achieved when the diagnosis is cancer. Three studies (15, 41, 69) that assessed levels of comprehension among patients signing statements of informed consent demonstrated that cancer patients have low levels of comprehension about such important information as the names of their drugs, the nature of procedures, treatment schedules, the risks of treatment, and their treatment alternatives. Dodd and Mood (23) are unique in having reported patient education procedures that improved the process of obtaining informed consent. Their method consisted of (a) listening to the informed consent interview (conducted by an oncology nurse) and (b) giving the patient an index card summarizing what was said during the interview. Subjects given cards recalled significantly more information than the control group and identified potentially lethal side effects with 71% accuracy, as against 21% for the control group. The figure of 21% should not go unremarked, since it is roughly typical of the degree to which the term “informed” can be applied to cancer patients’ consent, in general. Equally important, however, is that Dodd and Mood are alone in having reported a way to improve it. Finally, their relatively simple and inexpensive education methods should encourage other persons responsible for obtaining informed consent to replicate their approach.
808
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KEINTZ,
AND
GLASSMAN
Managing the Treatment Regimen and Its Side Effects There are few chronic diseases where the need for active patient participation in treatment is more critical than it is for cancer, because some of the treatment side effects can be life-threatening (for example, bleeding and infection). Some of these side effects, such as nausea and vomiting, can be so debilitating and distressing that they cause patients to stop treatment (25). Others, such as weight gain (43) following the use of steroidal drugs for the treatment of breast cancer, may have the same effect but have received scant study. Patient education programs vary considerably in their comprehensiveness and in the quality of their evaluations. Without exception, though often with too little precision, the published literature on the effect of information and instruction supports the overall finding of the needs assessments discussed previouslycancer patients want, and can use, information and instruction. Prostate cancer patients reported a high level of understanding after being given a pamphlet about their radioactive iodine therapy (16); chemotherapy patients reported positive reactions to fact sheets about their treatment given to them by oncology nurses (72); radiation-therapy patients performed 31 to 45% better than a control group after viewing slide-tape presentations (32). In a more rigorously evaluated study of 48 chemotherapy patients, the group given written information and instruction by oncology nurses on how to manage side effects did so significantly better, and sooner, than those given written drug information only or the control group, which was simply exposed to casual conversation about treatment issues. On a test of drug knowledge, those who were given drug information performed significantly better than those who were not (20-22). In a carefully performed study, Beck (5) found that when nurses and patients were trained in oral care, infections associated with chemotherapy were reduced by two-thirds. This is noteworthy for two reasons. First, the authors used a clear physiological outcome measure-infections. Second, here is evidence that patient education actually can improve a condition associated with hospital stays that are too long to be fully reimbursed under the prospective payment system. Relaxation training, hypnosis, and guided imagery have been applied with some success to problems associated with the control of chemotherapy side effects, especially anticipatory nausea and vomiting (ANV). According to Redd et al. (65), ANV is gradual, usually first appearing after the fourth or fifth course of treatment and escalating in severity. Risk factors include both patient characteristics (for example, younger age) and regimen factors (for example, more drugs with more emetic potential). In a series of reports, Redd and co-workers (65, 66) and Burish and Lyles (9, 10) have discussed the problem of ANV and described the impact of relaxation training, guided imagery, and hypnotic control in reducing its effects. These methods are appealing, since they are not invasive, are low cost, cause no side effects, and can be taught to patients to practice on their own. Results of both case reports and controlled studies, although with small samples,
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EDUCATION
show that such behavioral methods can effect reductions in anxiety, nausea, and systolic blood pressure. A few patient education programs have had broader goals than site-specific treatment management. Cassileth et al. (13) conducted a series of instructional programs based on audiovisual methods. The results of the program showed its efficacy in significantly improving knowledge and reducing anxiety. Two other programs (33, 37) used a combination of instructional and group counseling methods to improve knowledge as well as psychological coping. Johnson (37) demonstrated that such a multidimensional program facilitated by a nurse resulted in significant progress among exposed patients on such variables as knowledge and anxiety. Jacobs et al. (33) evaluated the relative effectiveness of instruction (booklet, newsletters, and pamphlet) vs peer support for cancer patients with Hodgkin’s disease. The instructional group showed the most benefit, with reduced depression, anxiety, and life disruption. As with the Dodd and Mood study (20-23) discussed earlier, these more general studies demonstrate that relatively simple patient education interventions, including those of an instructional nature, may be quite effective alone but may be enhanced when combined with peer support and group counseling strategies (37). As discussed above, a particular aspect of cancer treatment that has been studied rarely is compliance with cancer treatment. One research program was designed both to document initial compliance with cancer treatment and to improve it. Levine and associates (46, 67, 68) initiated a comprehensive trial of compliance interventions among patients with hematologic malignancies. They used a variety of professionals and educational methods, including an interactive slide-tape program in combination with a behavioral program aimed at altering environmental cues in the patients’ homes. A preliminary analysis showed that, initially. 33% of all patients were noncompliant. Following intervention, there were highly significant improvements in medication compliance and appointment keeping for the experimental group. Since several studies of compliance are now underway, there is likely to be more evidence available soon regarding levels of cancer patient compliance. The studies reviewed here (2, 3, 67) suggest that compliance is more of a problem than once believed. However, the promising side of this is that, in at least one case, a multidimensional education program (46) was shown to improve compliance. REHABILITATION
AND CONTINUING
CARE
Few patient education programs have been directed at helping cancer patients achieve full physiological and psychological functioning, although some of the programs discussed earlier, such as Johnson (37), were comprehensive in scope and dealt with aspects of rehabilitation as well as treatment. Only a few investigators (50, 74, 79) have examined the educational problems and needs of patients with advanced disease. This is the area usually referred to as continuing care. Rehabilitation and continuing care programs are summarized in Table 3. Rehabilitation Programs Many patient rehabilitation
education
programs for cancer patients have used
810
RIMER,
KEINTZ,
REHABILITATION Reference
AND
GLASSMAN
TABLE 3 AND CONTINUING
Patient characteristics
Program
CARE
characteristics
Ferlic ef al., 1979
60 adults with advanced cancer
6
Watson, 1983 (78)
31 postoperative colorectal or bladder surgery patients
Individual counseling based on Carkhuff Helping Skills Model
Weisman ef al., 1980 (79)
117 recently inpatients;
2 interventions-one used a psychotherapeutic model; the other used cognitive skills training in a didactic
(26)
diagnosed 6 sites
sessions of group counseling
model
Selected findings Significant improvement (P < 0.001) on patient perception test for treatment group; more confidence in relationships with medical staff and satisfaction with hospital system Significant positive alterations in self-concept (P < 0.01) and self-esteem (P < 0.01) in experimental subjects Both interventions significantly reduced distress (P = 0.05); both groups had significantly less mood disturbance. fatigue, and confusion and more vigor than untreated group
counseling as the primary intervention technique (11, 26, 42, 44, 63, 73, 78, 81). In conformance with Glanz’s definition (27), counseling is defined as the individualized process by which a patient is helped by a professional to gain knowledge, self-understanding, improved decision-making, and behavior-change skills. Counseling was examined in group and one-to-one settings, using both professionals and volunteers. Patients exposed to counseling have shown positive outcomes (10, 30, 42, 61, 70, 75) ranging from increased confidence in relationships with medical staff (26) to positive alterations in self-concept and self-esteem (78). Weisman et al. (79) investigated cancer patients’ adaptation and concluded that patients who coped most effectively were those who employed more coping strategies, were able to revise them as necessary, anticipated change for the better, and used specific action plans to deal with immediate concerns. They subsequently developed two interventions, one based on a psychotherapeutic model and the other on a didactic model, using cognitive skills training and behavior therapy. Both strategies helped patients in the intervention groups to reduce their distress and design future plans, but neither emerged as significantly better. Patients in the intervention groups had significantly less total mood disturbance, fatigue, and confusion and more vigor but not less tension, depression, or anger. The interventions helped to resolve problems but not to reduce their number. Continuing Care-Pain Control It has been estimated that 60-90% of cancer patients experience pain at some time during the course of their disease (8). In view of this, it is surprising that so few patient education programs have been directed at alleviating pain and the side effects of pain regimens. Jones et al. (36) described the results of a descriptive study of pain knowledge, attitudes, and behaviors among 82 patients at a cancer center. The failure of most patients to recall information about managing the side effects associated with pain medicines suggests the need for educational inter-
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ventions, because some of these side effects-such as constipation-can be severe and distressing. Compared with programs aimed at helping patients to understand and/or manage the treatment regimen, patient education programs for the rehabilitation and/or continuing care of cancer patients are in a relatively underdeveloped state. The implementation and evaluation of patient education programs from hospice patients are areas that should be addressed. Except for the Ferlic et al. study (26), few programs have reported systematic approaches to the diagnosis, program design, or evaluation of rehabilitation and continuing care programs. METHODOLOGICAL ISSUES IN CANCER EDUCATION PROGRAMS
PATIENT
Evaulation
Because of the medical and psychosocial impact of cancer on patients and their families, cancer patient education works toward a wide range of medical and nonmedical goals. The complexity of these issues makes evaluation both more difficult and more necessary. The ideal evaluation includes three components: (a) process, to assure program quality and satisfaction of patients and their families and to monitor resource allocation; (b) impact, to assess changes in knowledge, attitudes, behavior, and emotional status; and (c) outcome, to monitor changes in health status, clinical signs and symptoms, and quality of life (29). In view of the many institutional and professional concerns to be considered during the development and implementation of a patient education protocol, it is understandable that compromises are often necessary on issues that affect the evaluation plan, such as eligibility criteria, the logistics of data collection, study design, or variables to be measured. Some programs included in this review, however, performed no evaluation. They omitted even basic demographic and clinical information about the patients or failed to describe the intervention or data collection procedures in sufficient detail for the reader to understand what occurred. This makes systematic replication or comparison impossible. Many programs, however, did conduct evaluations. Even these evaluations reflected problems in one or more of the following areas: defining measurable objectives, establishing clear eligibility criteria, identifying a comparison or control group, selecting appropriate measures, or accruing sufficient sample sizes. Table 4 summarizes some examples of cancer patient education evaluations. They are noteworthy because they use quasi-experimental or experimental designs with measurement methods capable of producing reliable data. The evaluation designs were usually quasi-experimental (12, 13). They ranged from nonrandom, one-group case studies to multigroup factorial designs. Random assignment to groups often was modified by prior stratification based on demographic or medical variables or on pretesting (10, 32, 37, 79). Some studies with pretest-post-test designs were strengthened by the use of multiple postintervention observations (IO, 26, 65, 79). Patients’ prognoses, often limited to weeks or months, may preclude planning long-term follow-ups of 6 months or more, but additional observations, even a few weeks apart, permit
RIMER,
812
KEINTZ,
AND GLASSMAN
TABLE 4 EVALUATION
Reference Burish and Lyles, 1981 (10)
PATIENT
Evaluation design”
EDUCATION
Measure@
RO R 0
X
0 0
C: Pulse and blood pressure; nausea E: Multiple Affect Adjective Check List
0
x
0
E: State-Trait Anxiety Inventory K: 5-6 multiple-choice items P: Patients’ satisfaction with program
0 0 0 0
X, X, X,
0 0 0 0
C: Kamofsky Performance Scale B: Self-reported self-care for side effects K: 23-item pretest and 15-item posttest
0 0
x
0 0
E: 53 items on patients’ perceptions; Differential Personality Questionnaire; adaptation of the Adjective Check List
0
(W x
Cassileth et al., 1982 (13) Dodd, 1982, 1983 (20-22)
OF CANCER
RC R R R
Ferlic et al., 1979 (26)
Israel and Mood, 1982 (32)
R R
K: 8- 11 items on each of 3 programs
Jacobs ef al., 1983 (33)
R’ 0 R 0 R 0 R 0
X, X, X,
0 0 0 0
B: Cancer Patient Behavior Scale E: Cancer Patient Behavior Scale K: 20-item multiple-choice test
Johnson, 1982 (37)
RO R 0
X
0 0
E: State-Trait Anxiety Inventory Q: Purpose in Life Test K: Content of 6 class sessions
Levine et al., unpub (46)
x
0 0
0 0
0 0
0 0
0 0
0 0
C: Monthly serum samples B: Self-report of medicine taking P: Appointment keeping
Redd et al., 1982 (65)
0 0
X, x,
0 0
X, x,
0 0
X, x,
0 0
C: Vomiting before and during chemotherapy; patients’ ratings of nausea
Watson, 1983 (78)
RO R 0
X
0 0
Weisman et al., 1980 (79)
Od R Od R 0e
X, X,
0 0 0
0
E: Tennessee Self-Concern Scale; Rosenberg Self-Esteem Inventory P: Counseling session log 0 0 0
0 0 0
0 0 0
B: Number and type of coping strategies E: Inventory of Current Concerns; Profile of Mood States (POMS); Index of Vulnerability P: Patient perceptions; Therapist ratings
a See Campbell and Stanley (12) and Cook and Campbell (17). b Abbreviations used: C, clinical signs and symptoms; B, behavior; E, emotional status; Q, quality of life; K, knowledge; P, process. c Factorial design employed. d High-risk group. e Low-risk group.
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assessment of the persistence of behaviors, the stability of emotional status, and the recall of information. To demonstrate changes in short-term knowledge alone is necessary but not sufficient to evaluate the effects of cancer patient education. Multiple impact measures increase the likelihood of detecting significant differences between study groups and strengthen the case for long-term program effects. Few evaluations have examined both impact and outcome measures (10, 21, 22, 46). The failure to include outcome measures is a methodological weakness that could be remedied. Health status and clinical signs often can be abstracted directly from the medical record without imposing an additional burden on the patient or cooperating staff. When significant differences between treatment and control groups are documented, they provide strong evidence of program effectiveness. Process data are important in monitoring program quality. Only two investigators reported systematically gathering process information about participants’ satisfaction with the program (13) or the patients’ perceptions of the intervention (79). The evaluations often had small sample sizes, that is, less than 50 patients. Probably this reflects the limited number of cancer patients treated by most institutions, which results in the slow accrual of subjects. In many studies with small samples, inappropriate parametric techniques, such as two-sample or paired-sample t tests, were used even when assumptions about the sample distribution were severely strained. Their nonparametric analogs, such as the MannWhitney test or the Wilcoxon paired-sample test, would be preferable, especially when dealing with ordinal scale data. Inadequate sample size increases the danger of failing to detect true differences and limits meaningful conclusions. Measurement
Tools and Methods
Measurements of emotional status, including anxiety and depression, or quality of life often are essential to assess the impact of a specific program and to compare it to alternative interventions. Some of the studies reviewed made use of several standardized instruments, such as the State-Trait Anxiety Inventory, Multiple Affect Adjective Check List, Profile of Mood States, and Inventory of Current Concerns (10, 13, 37, 79). While the use of reliable and validated psychometric instruments should be incorporated into more evaluation designs, it is important to note that some of these tools were not designed specifically for use with cancer patients. The Lewis Anxiety Scale (51) has been developed for and normed with cancer patients. Further use may establish it as a more appropriate and acceptable psychometric instrument for cancer patient education programs when anxiety is being assessed. A methodological deficiency in the patient education literature is the tendency to view multidimensional constructs, such as compliance, as unidimensional. Consequently, measures of single variables often are used where multiple variables would be more appropriate. For example, Richardson et al. observed that compliance should include measures of appointment keeping and compliance with oral regimens and with side-effect management regimens (67). Patient education programs must strive to transcend the measurement of only those variables, such
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as knowledge, that lend themselves easily to assessment. Emphasis should be placed on also measuring effects on health status, as Beck did (5), and on the costs of care. THE PRESENT
AS A GUIDE
TO THE FUTURE
Growing evidence demonstrates that cancer patient education can improve knowledge, attitudes, behaviors, and health status (28). For example, Dodd (2022) showed that a planned patient education program could increase the practice of self-care among cancer patients. Beck (5) demonstrated the impact of a cancer patient education program in reducing infections and hence the costs, both monetary and physiological and psychological, of the disease. Thus, in the present era of fixed-price health care, patient education has significance even for those who cannot see beyond the bottom line. Accordingly, more program evaluators should assess cost outcomes. The preliminary results of Levine et al. (46) suggest that a comprehensive patient education program can improve cancer patients’ compliance with oral chemotherapy. Ultimately, this may be associated with higher survival. Other patient education programs have shown decreases in anxiety and/or increases in knowledge (13, 33, 37, 78) as well as improvements in self-concept and self-esteem. On the basis of the results of the patient education programs discussed here as well as the general health education literature, we would suggest refinements that should be incorporated into cancer patient education programs. These are: Use a combination of educational methods (5, 21, 22, 29, 37, 46). Enhance instructional methods by combining them with behavioral strategies, such as guided imagery, relaxation, and/or hypnosis (9, 10, 64, 65). l Employ repetition as a strategy to improve the generally diminished recall of cancer patients (54). l Design informed consent forms so they can serve as educational vehicles. Write at a level and in a format that can be comprehended by the average patient (66). l Devise programs that teach patients to practice self-care as a part of treatment regimens (20, 21, 75). l Develop special programs to meet the educational needs of older patients and other high-risk patient groups (80). l l
The status of cancer patient education remains that of a stepchild of patient education. The agenda for the future should include development and refinement of several areas, including (a) increasing the amount of effort being devoted to cancer patient education; (b) having more broadly trained health educators, as well as nurses, turn their attention to cancer patient education; (c) refining patient education for specific points along the cancer care continuum, including preparation for diagnostic procedures, interventions to enhance the comprehension of informed consent materials, programs aimed at pain control, and the adjustment of survivors to a long-term regimen of medical care and self-surveillance; and (d) developing screening tools to tailor the amount of information to patients’ infor-
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mation styles (57) and to screen and track cancer patients into different educational experiences according to their needs (28). The full significance of cancer patient education research is not likely to be achieved until three steps have been taken. First, programs should be evaluated on a consistent basis. Second, better data are needed (28); this requires a more systematic use of reliable and valid instruments. Finally, we must begin to make use of larger sample sizes. Because any one institution may treat only a small number of cancer patients, multi-institutional clinical trial groups for patient education research programs are indicated. A credible foundation that attests to the efficacy of cancer patient education has been erected. Cancer patient educators and researchers alike should find this a reason not for satisfaction but for challenge-to demonstrate new, more acceptable, and more effective ways to help cancer patients and their families live well with the disease and achieve the full potential of the weeks, months, or years that lie ahead. ACKNOWLEDGMENT We gratefully acknowledge the assistance of Deborah Rodzwic, R.N., M.S.N., in reviewing articles and preparing earlier drafts of the tables.
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