effects of preparatory patient education for radiation oncology patients

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Page 1: Effects of preparatory patient education for radiation oncology patients

Effects of Preparatory Patient Education for Radiation Oncology Patients

LAWRENCE C. RAINEY, PHD

Sixty cancer patients undergoing their first course of radiotherapy were assigned to one of two patient education conditions as they entered treatment: patients in the high-information condition were shown an audiovisual program, presenting procedural and sensory information about radiotherapy; patients in the low-information condition received standard care without exposure to the patient education program. On the basis of psychologic testing, patients were also classified on “vigilant-avoidant” and “repression- sensitization” coping style dimensions. Outcome variables, assessed during the first and last weeks of treatment (T, and T2, respectively) included ratings of treatment-related knowledge, state anxiety, and total mood disturbance. Preparatory patient education produced positive results regardless of coping style. Patients in the high-information condition showed significantly greater treatment-related knowledge (at T,) and less emotional distrss (at T2). There was no significant main effect for coping style, nor was there an interaction effect (coping style by intervention condition). Results are discussed in terms of the manifest need for preparatory information in radiation therapy settings, the role of coping style factors, and the clinical utility of patient education interventions.

Cancer 56:1056-1061. 1985.

HIS STUDY CONCERNS the impact of an audiovisual T patient education module on cancer patients’ treat- ment-related knowledge and affective status during ra- diation therapy. Thus, the study first asks: Does prepa- ratory patient education make a difference? Second, this investigation explores whether individual differences in styles of coping with threatening situations affect patients’ cognitive and emotional responses to the patient edu- cation intervention. In other words, is it necessary to have “different strokes for different folks” to make patient education effective?

Three lines of research provide the context for this study. First are studies that have described psychosocial aspects of radiation therapy. (It is interesting to note that, although approximately one half of all cancer patients receive radiation therapy in the course of their disease, relatively little attention has been given to the psychosocial impact of this treatment modality.) For instance, several studies have documented considerable

From the Division of Cancer Control, Jonsson Comprehensive Cancer Center, Los Angeles, California.

Current address: Mason Clinic, Section of Behavioral Medicine, Seattle, Washington.

Address for reprints: Lawrence C. Rainey, PhD, Department of Medicine, Section of Behavioral Medicine, The Mason Clinic, I100 Ninth Avenue, P. 0. Box 900, Seattle, WA 98 I I 1-0900.

The author thanks Debora Mueller, Paula Kanim, Linda Kanim, and Burton Ogata for their assistance in data collection, Alfred Marcus for statistical consultation, and the patients and staff of the UCLA Department of Radiation Oncology for their generous participation.

Accepted for publication October 1 1, 1984.

anxiety and depressive affect in radiation therapy pa- tients. Furthermore, Cassileth et aL4 examining ra- diation therapy patients’ knowledge of treatment, found that many had inadequate information about treatment and that a large majority of patients expressed a desire for more information. Lack of accurate information (or the presence of inaccurate information) may feed anxiety and other forms of emotional distress.

Psychologic preparation for stressful medical proce- dures constitutes the second relevant research area. Several intervention techniques, including hypnosis, re- laxation training, filmed modeling, cognitive-behavioral instruction, general emotional support, and provision of information, have been evaluated in efforts to reduce the aversiveness of various stressful medical procedures.’ The current study is an attempt to document the effects of an informative provision strategy in yet another setting-namely, radiation oncology.

The third stream of research feeding this study is that which has asked whether individual differences in coping style might predispose individuals to benefit either more or less from standardized, preparation-for-stress messages. Indeed, could explicit patient education actually have untoward effects for some persons? For instance, Andrew6 and DeLong’ arrayed surgical patients along a vigilant- avoidant coping style dimension by coding responses to a modified Sentence Completion Test.8 Both studies first varied the amount of presurgical patient education material and then examined a variety of postsurgical recovery measures, taking into account the patient’s

1056

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No. 5 PREPARATORY PATIENT EDUCATION - Rainey 1057

position on the vigilant-avoidant dimension. Both studies found that coping style did interact with instructional condition to affect recovery indices. For instance, De- Long7 found that vigilant patients who heard specific presurgical information recovered better in terms of both subjective and objective indices, but specific infor- mation had little demonstrable effect in avoiders. Shipley and associate^,^"^ who classified coping style by use of the modified Repression-Sensitization scale,’ ‘ . I 2 inves- tigated the effects of filmed modeling preparation for endoscopy. In short, more extensive preparation tended to decrease anxiety in sensitizers and had no effect or produced increased anxiety in repressors. These results lead Shipley and co-workers to conclude the sensitizers be “prepared extensively and repressors left alone or at least left with their defenses” (Shipley et a/.,’’ page 506).

Responding to the practical need for radiation therapy patient education materials as well as questions raised by the research discussed above, the current study was designed to evaluate what impact an audiovisual patient education program would have on new radiotherapy patients, specifically in terms of their fund of treatment- related information and the degree of dysphonc affect they experienced during treatment. Would the patients learn anything? Would such learning reduce emotional distress? Also of interest was the issue of whether coping style factors would interact with specificity of preparatory information to modulate patient responses, as had been found in at least some other preparation-for-medical- treatment studies. Would patients fare better if the amount of information was tailored to the patient’s coping style, or would all patients benefit from more information?

Methods

Subjects

Sixty patients beginning their first course of radiation therapy participated in the study. Participation was not restricted on the basis of disease site or stage, other treatment history, specific type of radiation therapy being administered, nor on the basis of any demographic variables. Men and women were equally represented in the study, the average age was 50.8 years (range, 21- 75), 62% of the participants were married, 83% were white, only 34% were employed at the time of the study, and the sample was skewed somewhat toward higher socioeconomic status (e.g., mean years of formal edu- cation equaled 14.1).

In terms of primary tumor site, head and neck cancers were the most frequently represented group, followed by breast, brain, cervix, and prostate cancers. The sample was evenly divided between those treated with a linear accelerator and those treated with a cobalt machine.

Intervention Conditions

At intake, patients were assigned to either of two intervention conditions, each offering different levels of preparatory patient education.

Patients assigned to the high-information condition were shown a 12-minute slide-tape program that (1) introduces the personnel of the radiation oncology de- partment and describes their professional roles; (2) shows various types of radiation therapy equipment; (3) outlines the sequence of treatment procedures to which the patient will be subjected; (4) explains what the patient will see, hear, and feel during treatment; (5) presents basic information about how radiation therapy works; (6) dispels common misconceptions (e.g., treatment itself is painful, the patient is made “radioactive”); and (7) explicitly encourages patients to ask questions and seek further information about radiation therapy. The program was presented individually to each patient, using a self-forwarding, rear projection slide-tape unit.

The low-information group consisted of patients who did not see the slide-tape program but instead simply underwent current departmental procedures. A copy of the booklet, “Radiation Therapy and You,” produced by the National Cancer Institute, was given to every patient in the study.

Assignment to Conditions

Due to several logistic and clinical factors, the medical staff deemed it undesirable to assign successive new patients randomly to intervention conditions (i.e., intro- ductory slide-tape program versus no slide-tape pro- gram). Instead, data were first collected from a series of 30 new patients receiving standard care (low-information group). The slide-tape program was then introduced, and the intervention, or high-information, group was recruited and assessed. Although this procedure techni- cally constitutes a “nonequivalent control group” design, there is no reason to believe that this method of assigning patients to different arms of the study introduced any systematic bias into the patient groupings. Indeed, com- parisons of the two groups on disease, treatment, and demographic variables revealed no significant differences between the two groups.

Coping Style Measures

Two measures were used to classify coping style: the Avoidant-Vigilant Sentence Completion Test (SCT) and the Modified Repression-Sensitization Scale (RS). As mentioned earlier, both had been shown previously to be related to psychologic response to preparation for stressful medical procedures. In the current study median splits on both measures were used to classify patients as

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1058 CANCER September I 1985 Vol. 56

TABLE 1. Means for Dependent Variables by Group and Repressor-Sensitizer Classification at Time 1

Repressor Sensitizer

A - S t a t e Low info 39.64 45.19 42.60

(N = 14) (N = 16) (N = 30)

(N = 16) (N = 14) (N = 30) High info 38.06 39.14 38.57

Total 38.80 42.37 40.58 (N = 30) (N = 30) (N = 30)

Total mood disturbance Low info 22.50 47.69 35.93 High info 25.94 29.64 27.67

Total 24.33 39.27 31.80

Radiation therapy questionnaire

Low info 14.57 15.44 I5.03* High info 17.00 18.00 I7.47*

Total 15.87 16.63 16.25

* P < 0.002. Info: information.

“sensitizers” versus “repressors” and as “vigilant copers” versus “avoiders.” Sensitizers and vigilant copers are characterized by typically seeking information about threatening or stressful events; repressors and avoiders minimize anxiety by shutting out awareness of anxiety- producing cues and thoughts.

Consistent with earlier work,I3 the two measures, although conceptually similar, were found in the current study to be empirically uncorrelated ( r = -0.04). They were therefore treated as two independent methods of

TABLE 2. Means for Dependent Variables by Group and SCT Classification at Time 1

Avoider Vigilant coper

A-State Low info

High info

Total

Total mood disturbance Low info High info

Total

Radiation therapy questionnaire

Low info High info

Total

43.06 (N = 18)

36.09 (N = 1 1 )

40.41 (N = 29)

34.28 22.36

29.76

15.44 18.00

16.41

4 1.92 (N = 12)

40.00 (N = 19)

40.74 (N = 31)

38.42 30.73

33.71

14.42 17.16

16.10

42.60 (N = 30)

38.57 (N = 30)

40.58 (N = 60)

35.93 27.61

3 1.80

15.03* 17.47*

16.25

* P < 0.001. SCT Sentence Completion Test; info: information.

classifying preferred styles for coping with stressful sit- uations.

Dependent Variables

The major outcome variables of interest were: (1) the patient’s knowledge of radiation therapy, and (2) the patient’s emotional status during the course of therapy.

Each patient’s knowledge of radiation therapy was assessed by a 2 I-item, objective questionnaire developed for this study: the “Radiation Therapy Questionnaire” (RTQ). The test included items on treatment methods, sensations experienced during treatment, side effects, departmental procedures, and common misconceptions.

Anxiety level during the course of treatment was assessed by the “State” form of the State/Trait Anxiety Inventory (A-State).14 A second, broader affective arousal indicator-Total Mood Disturbance (TMD)-was ob- tained from the Profile of Mood States.”

Data Collection Schedule

Patients were assessed at two points: ( I ) at the begin- ning of radiation therapy treatment, and (2) during the last week of treatment. The initial assessment (TI), which was administered as soon as possible after treat- ment began (days 1 -3), included questionnaires on demographics and coping style as well as the dependent variables (treatment-related knowledge and affective state). Patients in the high-information group received the patient education intervention immediately after completing the demographic and coping style question- naires and just before completing the questionnaires on treatment knowledge and emotional status. Patients in the control group were given a rest period, with no instruction, between the coping style questionnaires and the dependent variable questionnaires. Patients then received radiation treatment 5 days per week for a period of 4 to 6 weeks. The follow-up evaluation (T2) was administered during the final 5 days of treatment; it consisted of a reassessment of treatment-related knowledge (RTQ) and affective status (TMD and A- State).

Results

Results at Initial Assessment (T I )

Tables I and 2 present the dependent variable means and the resulting analyses of variance for the initial evaluation. As can be seen, there was, at the initial assessment, a statistically significant main effect for intervention group (i.e., high- versus low-information) on the objective measure of knowledge (RTQ). The group receiving the patient education intervention showed greater accuracy of treatment-related knowledge

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No. 5 PREPARATORY PATIENT EDUCATION * Rainey 1059

than the nonintervention group. However, the two groups did not differ significantly in affective status. The high- information group did have lower State Anxiety (A- State) and Total Mood Disturbance (TMD) scores than did the nonintervention group, but these differences did not reach statistical significance.

There was no statistically significant main effect for either the SCT or RS coping style measure, nor was there a significant interaction effect (treatment by coping style). Although there was no clear overall interaction pattern (intervention by coping style), it is interesting to note, for instance, that the highest affective disturbance scores were obtained by sensitizers (RS scale) in the low- information condition. These subjects had TMD and A-State scores that were much higher than those of the repressors in the low-information conqition. It was also noted that giving information to patients with a sensi- tizing coping style appears to have reduced their affective distress. For instance, sensitizers in the high-information condition averaged only 29.6 on the TMD indicator, as compared to 47.7 for sensitizers in the low-information condition. Similarly, their A-State scores differed consid- erably. On the other hand, there is no trend in the expected direction for interactions between repressors (or avoiders) and information condition. Avoiders and repressors in the high-information condition did not have increased anxiety and mood disturbance; if any- thing, their mood disturbance also decreased with infor- mation.

Results at lhe Follow-Up Assessment (T2)

A somewhat different picture emerges when the results for the follow-up evaluation are considered (Tables 3 and 4). The analyses of variance show that at the close of treatment there was a statistically significant main effect for intervention groups with regard to the affective measures. When grouped by SCT scores, the patients who received the patient education module reported less State Anxiety (37.9 versus 43.6; P < 0.05) and lower TMD (1 9.5 versus 4 1.2; P < 0.005).

The significant difference between intervention con- ditions on knowledge scores (RTQ), noted at T I , dis- appears at T2. Examination of the means indicates that, although the patient education group maintained a high level of knowledge, the low-information group had, by this point, closed the gap in knowledge. Both groups averaged approximately 80% correct responses on the RTQ by the time they had finished treatment.

Again, neither the main effect for coping style nor the interaction effect (intervention by coping style measures) is statistically significant. However, the pattern of cell means at TI is noteworthy; several of the trends observed at TI were seen at T2. For instance, sensitizers in the

TABLE 3. Means for Dependent Variables by Group and Repressor- Sensitizer Classification at Time 2

Repressor Sensitizer

A-State Low info High info

40.36 46.50 43.63 38.25 37.43 37.87

Total 39.23 42.27 40.75

Total mood disturbance Low info 29.07 51.81 4 1.20* High info 20.00 18.93 19.50*

Total 24.23 36.47 30.35

Radiation therapy questionnaire

Low info 16.29 16.75 16.53 High info 17.19 17.43 17.30

Total 16.77 17.07 16.92

*P < 0.02. Info: information.

low-information condition had a TMD score of 5 1.8, whereas responders in the same intervention condition averaged only 29.1. Other sensitizers who did receive patient education averaged only 18.9. Although these absolute score differences appear large, they do not reach statistical significance due to relatively high variability and small cell frequencies.

In brief, the findings at the follow-up evaluation show that patients who received the patient education inter- vention manifested significantly less affective distress, regardless of coping style. The high-information patients retained treatment-related knowledge, but other patients, not receiving the educational intervention, now matched them in knowledge. The coping style main effect and

TABLE 4. Means for Dependent Variables by Group and SCT Classificatiop at Time 2

Avoider Vigilant coper

A-State Low info High info

Total

Total mood disturbance Low info High info

Total

Radiation therapy questionnaire

Low info High info

Total

43.28 34.27

39.86

39.17 5.09

26.24

16.94 17.82

17.28

44.17 39.95

41.58

44.25 27.84

34.19

15.92 17.00

16.58

43.63* 37.87;

40.75

4 I .20t 19.50t

30.35

16.53 17.30

16.92

* P < 0.05. t P < 0.005. SCT Sentence Completion Test; info: information.

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1060 CANCER September 1 1985 Vol. 56

the interaction effect were not significant, but the pattern of group means suggests a trend toward an interaction effect.

Discussion

Value of Patient Education

Patient education strikes many health educators as inherently valuable, but empirical documentation of its efficacy and value to patients is often missing. This study adds additional empirical support to claims for the value of procedural and sensory information provided before a stressful medical procedure. There are, of course, ethical and legal arguments for informing patients about the medical procedures they are to experience; others would argue that having well-informed patients affords practical benefit in terms of patient management (e.g., increasing treatment compliance). Studies such as this one suggest yet another basis: namely, that providing accurate information and creating appropriate expecta- tions may help patients reduce psychologic distress.

The results of this study indicate that patient education in a radiation therapy setting can effectively increase patients’ treatment-related knowledge and ameliorate the degree of anxiety and general emotional distress experienced during treatment. Although the educational intervention consisted of a relatively simple audiovisual presentation at the beginning of tretment, it yielded measurable improvements in the patients’ understanding of treatment and in mood state.

The pattern of knowledge score results is not surpris- ing. The patient education intervention had an imme- diate effect on patients’ knowledge, resulting in signifi- cantly higher scores for this group on the objective knowledge test when assessed in the first week of treat- ment. The patients in the nonintervention group even- tually gathered as much information, averaging the same as the intervention group, when assessed at the close of treatment. The additional information eventually accrued by the control group patients may have come from reading patient education materials or from discussions with physicians and other health care personnel in the department.

The pattern of affect score results, however, may seem somewhat harder to interpret. Judging from the results at TI , the patient education intervention did not have an immediate impact on mood state: patients receiving the educational intervention did not report significantly less distress than the control patients at this point in time. The beneficial effect on mood state apparently developed more slowly. Unfortunately, the design of this study, with only two assessment points, does not allow one to ascertain precisely when in the course of treatment the reduction in anxiety and mood disturbance

occurred. However, the patient education group, armed with more accurate information from the outset, showed a decrease in mood disturbance across the course of treatment, whereas the control group’s affective distress scores actually rose slightly, resulting in a significant between-group difference on the two affect measures at the end of treatment.

The Role of Coping Style

With regard to coping style dispositions, the results indicated that coping style did not play as potent a role as had been anticipated. Several of the group means were in the predicted direction, although they did not reach statistical significance. For instance, the data suggest that whether or not a patient received explicit preparatory information before radiation therapy had a more marked emotional impact for persons with a vigilant, sensitizing style than for those with a repressive, avoidant style. It also appears that those with vigilant or sensitizing styles of coping with threatening situations may learn more from educational materials, if given the opportunity. On the other hand, there were no untoward effects for avoiders and repressors, as had been suggested by some other st~dies.~.” Thus, this study presents equivocal results regarding the role of coping style, neither strongly supporting nor detracting from the contention that individual differences in coping dispositions contribute to psychologic response to treatment and to preparation- for-stress messages.

The Reality of Information Needs

“Why waste money and time with patient education projects like this?’ asked one physician, when he heard of this study. “Patients know what to expect. . . . Why, we always explain it clearly to them.” It would be comforting to think that such opinions are uncommon, but experience suggests that many medical practitioners hold such views.

Data from this study suggest that radiation therapy patients do, in fact, have substantial unmet information needs. Consider, for instance, a few items from the Radiation Therapy Questionnaire (the 2 I -item, objective test of basic knowledge about treatment procedures). One must keep in mind that, when this questionnaire was first administered, the patients had already consulted with the radiation oncologist, had had at least one (sometimes two) lengthy treatment-planning sessions, and had come back to actually begin treatment. Among those patients receiving standard care, a few (15%) mistakenly thought that treatment would be painful and 12% were confused about how long they would be exposed to radiation during each treatment session. (No patient should be misinformed about such matters). A

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No. 5 PREPARATORY PATIENT EDUCATION Rainey 1061

remarkable 48% of these patients missed a true-false item about how radiation therapy works, incorrectly endorsing the statement that radiation therapy “. . . uses heat to burn away cells.” Procedures of the depart- ment were not well-understood either. Thirty-three per- cent did not understand why patients had to wait for up to a week between treatment planning and the beginning of treatment itself. (Knowing they had cancer, or suffering from some symptom of the disease, the rationale for this waiting period was not a matter of indifference.) Over one half (55%) could not correctly identify the purpose of simulation (treatment planning) from among four multiple-choice answers. (Remember, these patients had themselves already undergone that procedure.) To take one last example, 70% of this sample could not correctly identify the meaning of “rad” (as in “You’ll be receiving 3000 rads, Mrs. Jones”) from among four possibilities (25% would get it right by chance alone).

There was considerable evidence that patients were eager to learn more about their treatment. This is shown, for instance, by the fact that a large majority reported reading the patient education booklet that was provided. To the item, “I would like to learn more about radiation therapy,” 85% replied affirmatively.

These data, plus the results of the major hypotheses being investigated in this study, suggest that a meaningful way for the health care team to help patients cope with the stresses of radiation therapy is to see that patients are adequately informed. One need not search for esoteric or complex psychologic interventions when basic infor- mation needs have not yet been met. Obviously, there is a need for more research on how to convey such messages most effectively and how they should be tailored for different patient groups. But when, for instance, approximately one half of the patients are confused about how treatment works and do not understand the rationale for a treatment-planning procedure they had just experienced, there is an obvious agenda for health professionals. By addressing such information needs,

health professionals will not only fulfill a basic respon- sibility to those being treated, but they also support important cognitive strategies by which patients can cope more effectively with treatment-related stresses.

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