Patient education is a critical component of patient care. For oncology outpatients receiving radiation therapy (RT), it includes education of patients and families about the disease process, diagnostic procedures and treatment goals, and clarification of information to assist with treatment decisions as well as counseling regarding psychosocial issues. 1 Specific information regarding simulation, administration of RT, the treatment schedule, and treatment side effects must be included. 1
Patient education is an expectation and a major component of the oncology nurse’s role and labor intensive. 2 Despite the significant amount of nursing time spent educating patients, for the most part, the impact of the education is not known. 1 Rising healthcare costs, a shortage of nurses, and the multiple demands on staff nurses make it imperative to demonstrate that cancer education programs address patients’ information needs and preferences. The primary purpose of this study was to evaluate the impact of an education program on the perceived adequacy of knowledge of patients with breast cancer receiving RT at the Tom Baker Cancer Centre (TBCC), Calgary, Canada.
Identifying the type of information an individual wants, how much, and under what circumstances is more of a problem today than is the availability of information. 3 Consequently, secondary purposes of the study were to investigate patients’ preferences regarding involvement in decision making, the amount and type of information wanted, and the preferred information-seeking activities.
Conceptual Framework and Literature Review
The theory of stress, appraisal, and coping was the conceptual framework underpinning this study and provides a rationale for providing patient education; a breast cancer diagnosis and its treatment results in a stressful situation about which women generally want information. 4 Acquiring knowledge and information is believed to be one method of gaining cognitive control. 5 Coping has been conceptualized in terms of a process (strategies for seeking information) and a pattern (preferences for information). 6 Seeking information about one’s diagnosis and treatment is an active problem-focused coping strategy 7–9 that centers on appraising the problem, choosing among alternative solutions, and learning new skills and behaviors. 10–12 It is one of the most universal of the 5 forms of coping and has been shown to have beneficial effects on adjustment. 4,7,13,14 Alternately, a coping pattern, expressed as preferences about information, may reflect individual differences in desire for information and consequently may result in different individual responses to informational strategies. 6
As a coping strategy, active information seeking implies that the need for information (as factual, theoretical, or experiential knowledge) has derived from its lack. 4 Moreover, the extent of this lack of information and the degree of information relevance determines need and, in turn, influences information-seeking behaviors. 4
Despite the importance generally attributed to educating patients, only 6 studies evaluating educational interventions for RT patients have been published in the last decade, and only 3 of these included measurements of patients’ knowledge. A weekly informational RT newsletter for patients with various cancers was reported to improve patients’ knowledge, 15 although study criticisms included methodologic weaknesses and concerns with knowledge measurement. 16 As well, RT patients (N = 38) who listened to informational audiotapes (RT, skin care, side effects, self-care procedures, and after-treatment care) were more knowledgeable, compared with 31 patients receiving standard care only, 17 although the 23-item knowledge test, based solely on audiotape content, was not validated. Alternately, no significant knowledge differences were found for patients with various cancers given standard care or 3 additional 1-hour educational sessions that included information about RT, coping strategies, and communication skills. 18 The 15-item knowledge questionnaire was specific to the intervention and subject to criticism. 19
Three other studies measured RT patients’ psychosocial responses to educational interventions. Patients with various cancers undergoing RT (N = 25) who were given sensory and procedural information during 2 teaching sessions in addition to usual care were significantly less anxious than a matched control group (N = 25). 20 Similarly, patients with breast and prostate cancer undergoing RT (N = 226) benefited from four 30-minute structured informational interventions in addition to standard care, experiencing less disruption in life activities. 21 The only study including patients with breast cancer undergoing RT exclusively (N = 134) led to findings that the addition of five 30-minute sessions during treatment with 2 more follow-up sessions did not lead to measurable effects on quality of life or side effects but did minimize stress reactions. 22 In these latter 2 studies, the education included information describing experiences and routines with simulation and treatment, side effects and their subsidence, and issues with usual life activities after treatment. Generally, patients with cancer undergoing RT are believed to require concrete objective information describing simulation, treatment, and the experience, including side effects. 23,24
Other studies have described the information needs of recently diagnosed patients with breast cancer 25–29 and patients with cancer receiving RT. 30–33 Three categories (disease spread/stage, likelihood of cure, and treatment options) 25,34,35 represented priority information needed by newly diagnosed patients with breast cancer and, irrespective of the type of treatment for patients with breast cancer, disease and treatment were identified as most important. 28,29,33 Because the information that patients with cancer need may not be the same as information nurses believe they need, 30 patients should be given the opportunity to ask questions individually and to have priority information offered as part of education programs.
Although patients undergoing RT who would like to be actively involved in treatment decision making want detailed information about diagnosis, treatment alternatives, and procedures, those who prefer a passive decision making role may not. 36 Recent findings, however, indicate that a majority of patients with breast cancer believe they need information in all areas. 29 Previouis evidence suggests that both younger and older patients undergoing RT perceived their knowledge to be significantly greater than their learning needs. 31
RT is an established treatment faced by a large number of patients. There is sound evidence about patients’ information needs around which education programs can be designed and an expectation that nurses will be involved and responsible for delivering the education. Overall, however, there is insufficient evidence to demonstrate that educational programs for patients with breast cancer undergoing RT are effective. This study was designed to answer the following questions:
- What is the effect of an educational program on the perceived adequacy of knowledge of patients with breast cancer undergoing RT?
- What is the effect of age on the perceived adequacy of knowledge of these patients with cancer?
- How much and what type of information do they prefer?
- What is their preference for involvement in decision making?
- What information-seeking activities do these patients use?
- Is there a relationship between information preferences, information-seeking activities, and perceived adequacy of knowledge?
A quasiexperimental design was used to evaluate patients’ perceived knowledge before and after a breast cancer RT education program. Variables included perceived adequacy of knowledge, type and amount of information wanted, preferences regarding involvement in decision making and information-seeking activities, and demographic and disease-related characteristics.
Sample and Setting
The TBCC is a tertiary care center providing outpatient consultation, treatment and research services for 1.2 million residents of southern Alberta, Canada. Within this setting, RT is provided to 480 new patients with breast cancer annually.
Because the disease process differs with age and the informational needs for women aged 55 years and older are greater compared with those of younger patients with breast cancer, 33,37 quota sampling was planned. Premenopausal subjects were assumed to be included in the 20-to 45-year-old category (Group 1), perimenopausal subjects were assumed to be in the 46-to 55-year-old category (Group 2), and postmenopausal subjects assumed to be in the 56-year-old and older category (Group 3). A priori, it was determined that a sample of 60 subjects was needed based on information pertaining to the Toronto Informational Needs Questionnaire-Breast Cancer (TINQ-BC). 33 This sample size would permit estimation of the information needs total score within ± 9, assuming a standard deviation of 35 based on how precisely the total score can be estimated at 2 time points as well as the average difference over time. The change in score that would constitute a clinically important difference is unknown. Recruitment was planned to ensure a minimum of 20 subjects in each age group and the possibility of a 25% attrition rate.
Inclusion criteria required that subjects were diagnosed with primary breast cancer (all stages), were scheduled to receive RT with a treatment plan that could also include surgery or chemotherapy as adjuvant therapy, were women and fluent in English, and could be contacted before their simulation visit to receive information about the study and an invitation to participate. Exclusion criteria were recurrent breast cancer and previous RT treatment.
The education program, based on priority information needs described in the literature, 25,33,34 centers on an interactive video module (Info-Touch) provided by nurses, individual teaching provided during simulation and on an ongoing basis by the RT multidisciplinary team, and a structured group class taught by nurses (Figure 1). The overall focus is on disease spread/stage, likelihood of cure, and treatment options. The program is designed so that important information is offered to patients consistently.
At the first individual session, before simulation (an RT planning appointment), a 20-minute interactive video module providing a general overview of the RT experience is viewed by patients. The second session of individualized education occurs during simulation. Education focuses on what the patient can expect during simulation and treatment as well as self-care instructions for the treatment area. The third session occurs during the first week of RT; patients are scheduled to attend a 1-hour group class focusing on side effects and other patient concerns. After the third session, during each treatment, individualized teaching about RT and symptom management is patient driven and provided by radiation therapists, registered nurses, and radiation oncologists.
PERCEIVED ADEQUACY OF KNOWLEDGE
The TINQ-BC was developed to identify what information is needed by patients with breast cancer undergoing RT to help them deal with their diagnosis. 28,33 It includes 52 questions in 5 subscales: disease, investigative tests, treatment, physical functioning, and psychosocial functioning. Informational needs are greatest in the disease and treatment subscales. Each question is scored on a 5-point Likert scale ranging from strongly disagree to strongly agree and including an option for “no opinion.” Content validity and good internal consistency reliability with Cronbach’s alphas of 0.81–0.93 are reported.
In consultation with one of the authors (S. Galloway, oral communication, March 14, 1997), the stem of the TINQ-BC was adapted to focus on perceived knowledge sufficiency. Subjects were asked about their perception of the adequacy of their knowledge rather than about information needs, in keeping with a focus on evaluating the education program. The revised questionnaire was pilot tested on 5 patients for clarity of meaning and ease of completion and was found to be satisfactory.
PREFERENCES REGARDING AMOUNT AND TYPE OF INFORMATION WANTED AND INVOLVEMENT IN DECISION MAKING
Information preferences were determined by using 4 forced-choice sections of the Informational Styles Questionnaire (ISQ) measuring patients’ preferences for information about disease and preference about involvement. 37 The questionnaire was developed from a series of pilot tests on 50 patients eliciting patients’ information and participation preferences. Subsequently it was tested with 256 patients with cancer selecting items using wording that was meaningful to patients and discriminated between patients’ viewpoints. 37 Since then, the ISQ has been used with 109 patients with cancer 3 and, as well, with 193 Portuguese patients with cancer to describe information preferences. 38 The ISQ has clinical use for nursing practice because of its structure, ease of use, and type of information generated. 3
For this study the ISQ was used to determine patients’ (1) preferences about amount of information (level of detail) with 3 response options, (2) preferences about type of information with 3 response options, (3) preference about type (specific focus) of information (12 questions) each with 3 response options, and (4) preference for involvement in decision making with 2 response options.
Eleven questions were used to describe information-seeking activities. Four items were selected from the Ways of Coping information-seeking subscale, which has been used to measure information-seeking as a distinct coping strategy characterized by an active instrumental orientation to illness. 10 The 4 items include reading books and articles, making and following a plan, looking up medical information, and asking others (not physicians) for advice. This subscale was used with 42 patients with cancer to describe their search for information about illness and treatment. 10
Six additional items were identified from published literature and one more based on information from patients given to the authors (seeking information on the Internet). Five information-seeking activities used as coping strategies and identified retrospectively by 244 women with breast cancer 13 were included: getting as much information as possible, becoming well informed, getting information from doctors and nurses, asking about alternative therapies, and making contact with others with breast cancer. The remaining question about joining a support group was based on interview data delineating the coping strategies of 14 survivors of breast cancer. 11 Each of the 11 questions had 5 response options, including “definitely does not apply to me,” “does not apply to me,” “neutral,” “applies to me,” and “definitely applies to me.” The questionnaire was pilot tested for clarity of meaning and ease of completion on 5 patients not included in the study, and changes were not required.
After the first patient appointment, including a nursing assessment and physician examination, a treatment decision was made about RT or other options. Patients with primary breast cancer undergoing RT were approached about the study 1 week before simulation and their voluntary participation requested. Patients who provided informed consent completed 4 pre-education questionnaires. They began the first educational session of treatment-specific teaching included in Info-Touch. During the second session, information was individualized and focused mainly on simulation and treatment. Treatment was initiated after simulation and planning for RT. The third education session, the group class, was scheduled within the first week of RT. Treatment continued for 4 to 6 weeks, concurrently with nursing assessments, physician reviews, and individualized information. Two posteducation questionnaires were completed at the completion of RT, in person or by mail.
Study approval was received from the University of Calgary Conjoint Medical Ethics Committee and the TBCC Clinical Research Unit. All subjects were offered usual patient education; assessments and treatments were unchanged by the study, and there were no known risks or benefits for patients.
Fisher’s exact test was used to compare demographic characteristics and other categorical variables among age groups. Questions on the perceived knowledge adequacy questionnaire had a “no opinion” response category that was assumed to be used when subjects did not know how they wanted to respond; therefore, scores were adjusted to a scale eliminating “no opinion” and retaining responses 1, 2, 4, and 5 to preserve the larger separation between negative (1, 2) responses about perceived adequacy of knowledge and positive (4, 5) responses. The paired Wilcoxon rank sum test was used to evaluate changes in perceived knowledge adequacy scores from pre-education to posteducation. Because scores were not normally distributed, median scores were used for demonstration purposes. Percentages of score changes from negative to positive responses were calculated, and their 95% confidence intervals (CI) were established using the binomial exact method. The Kruskal-Wallis rank sum test was used to compare perceived knowledge adequacy scores pre-education and posteducation by age group. The Spearman’s rank correlation test was used to determine the relationship between information preferences, information-seeking activities, and perceived knowledge adequacy before education.
In total, 98 patients were contacted to receive study explanations before recruitment at the time of their appointment for simulation. Patients who could not be contacted in advance because of unanticipated changes in the booking and referral process and triaging according to disease state were not included. Among those contacted, 1 patient was excluded because of previous RT treatment and 7 because they were not able to understand English. Eleven patients elected not to participate because of problems with time (n = 4), of disinterest (n = 2), of multiple reasons (n = 1), they did not like answering questions (n = 1), or they did not state a reason (n = 3).
The final sample comprised 79 subjects, representing 16% of patients with breast cancer treated annually in the TBCC Radiation Oncology Department. The sample included 23 Group 1 subjects aged 20-45 years, 28 Group 2 subjects aged 46-55 years, and 28 Group 3 subjects aged 56 years and older.
All 79 subjects completed the 5 questionnaires administered pre-education. Eight subjects did not return by mail the perceived adequacy of knowledge and information-seeking activities questionnaires after education, 3 of whom had withdrawn because of disease progression. In addition to these 8 subjects, 1 other had not answered 50% of the perceived adequacy of knowledge questions after education. A separate analysis was undertaken, and results indicating statistically significant differences/no differences were the same whether the subset of 70 subjects or 71 was included. All subjects completed more than 50% of the perceived adequacy of knowledge questions before education.
There were no significant differences between age groups in marital status, urban/rural residency, and educational level, although there was a significant difference between groups in their frequency of using a computer (Table 1). Younger subjects used the computer more often than older subjects. More than two thirds of the sample lived within 1 hour of the treatment centre, whereas remaining subjects lived in a rural setting. More than 80% of subjects in each age group had surgery previously, and almost 40% in each group had chemotherapy.
The 3 age groups were not significantly different in disease-related characteristics, including risk of disease recurrence, previous chemotherapy, and previous surgery. However, a significant difference was found between groups in time since diagnosis; the interval from diagnosis to RT for younger subjects was longer compared with older subjects. The reasons for this difference are unknown.
EFFECT OF EDUCATION PROGRAM ON PATIENTS’ PERCEIVED ADEQUACY OF KNOWLEDGE
The internal consistency coefficient (Cronbach’s alpha) for the perceived adequacy of knowledge questionnaire was .96. For the total group, all subscale scores increased significantly between the pre-education and posteducation measurement times (Table 2). The percentage of subjects overall who believed their knowledge to be adequate and answered positively posteducation (ie, responded 4 or 5) was disease 85%, investigative tests 96%, treatments 100%, physical functioning 97%, and psychosocial functioning 94%. Moreover, at least 71% of these subjects who did not perceive their knowledge to be sufficient initially (1, 2 response) responded positively posteducation (3, 4 response).
Pre-education, subjects’ perceived adequacy of knowledge scores for the disease and treatment subscales were lower than the scores for the other 3 subscales. When individual questions within subscales were examined, at least 50% of respondents believed they did not have enough information about 5 of the 9 disease questions and 12 of the 19 treatment questions. For the 3 remaining subscales, 50% or more of the subjects perceived their knowledge to be adequate for more than 90% of the questions.
Median scores before and after the education program were compared for Groups 1, 2 and 3 (Table 3). There were significant differences pre-education between groups for the disease, investigative tests, and treatment subscales. More Group 1 subjects believed that they had enough information pre-education than did Group 2 and 3 subjects. However, Group 3 subjects’ scores for 4 of 5 subscales (disease, investigative tests, treatments, and psychosocial functioning) tended to increase more than Groups 1 and 2 subjects.
Group 1 subjects’ posteducation scores were higher than scores for subjects in the other 2 age groups for all subscales. Significant differences between groups were observed for investigative tests, treatments, and physical and psychosocial functioning, although not for the disease subscale.
PATIENTS’ PREFERENCES ABOUT AMOUNT AND TYPE OF INFORMATION AND DECISION MAKING
Although few in number, some patients did not want any more details than were necessary about RT and preferred to leave treatment decisions to the doctor rather than to participate in the decision (Table 4). As well, 4 subjects in the sample wanted only the information they needed to care for themselves compared with as much information as possible. No patients wanted information only if it contained good news. There were no significant differences between age groups for amount and comprehensiveness of information preferred or about participation in care or treatment decisions. Moreover, there was no significant relationship between preferences about amount and type of information and high risk of disease recurrence (Stages 3, 4) or with time from diagnosis.
Overall, more than 50% of subjects rated 8 of the 12 questions about the type of information they wanted as information “absolutely needed” (Table 5), and all patients wanted information about “all possible side effects.” Alternately, examples of effective treatment, noneffective treatment, and whether cancer is inherited or contagious was information not wanted by at least 10% of respondents.
Significant differences between groups were observed for “absolutely need” and “like to have” responses for 6 of the 12 type of information questions: information about all possible side effects (P = .01), what the treatment would accomplish (P < .01), exactly what the treatment would do (P < .01), what the week-to-week progress is (P < .01), examples of cases in which treatment was effective (P < .01) and not effective (P < .01). For all 6 information questions, proportionately more older subjects compared with subjects in Groups 1 and 2 responded that they would “like to have” rather than “absolutely needed” the information.
PATIENTS’ INFORMATION-SEEKING ACTIVITIES
Before the RT education program, 7 of 11 information-seeking activities were practiced by more than half of the subjects: get as much information as possible (88%); look for information in books and pamphlets (69%); ask for information from doctors and nurses (60%) and patients, friends, and relatives (59%); become well informed (60%); make and follow a plan of action (59%); and make contact with others (56%). Pre-education, the only significant difference between groups was related to making and following a plan of action (P < .01): Group 1, 83%; Group 2, 70%; and Group 3, 30%. The remaining 4 activities were preferred by fewer than one third of subjects before education: looking up information on the Internet (16%), joining a support group (22%), asking for information about alternative therapies (32%), and looking up medical information (33%).
After RT education, at least 40% of subjects who initially did not practice the following information-seeking activities changed after RT education: became well informed; asked for information from doctors and nurses, patients, friends, and relatives; looked for information from books, pamphlets, magazines, and journals; made and followed a plan; and desired contact with others. For the other 5 activities, two thirds of the subjects continued not to practice these activities even after RT education. However, for 2 of these activities, significant differences between groups were observed with use of the Internet (P < .01) and joining a support group to get information (P = .03). Group 1 reported the most Internet use, and Group 2 used support groups most frequently compared with the other groups. Overall patients were less inclined to join a support group than to seek one on one contact with others for information.
RELATIONSHIP BETWEEN INFORMATION PREFERENCES, INFORMATION-SEEKING ACTIVITIES, AND PERCEIVED KNOWLEDGE ADEQUACY
The only significant correlation for amount of information preferred and perceived knowledge adequacy was with the posteducation treatment subscale (P = .03). When each of the 11 information-seeking activities was correlated with pre-education perceived knowledge adequacy subscale scores, 6 activities were significantly correlated with at least 1 knowledge subscale (Table 6).
Becoming well informed about RT and making and following a plan of action were significantly correlated with at least 3 subscales. The disease and treatment subscales (subscales with lower scores before education) were significantly correlated with half or more of these 6 information-seeking activities.
An expectation with any oncology education program is that patients’ actual knowledge will increase when the information is relevant and understood. That the perceived knowledge adequacy scores of patients with breast cancer undergoing RT were significantly higher after education suggests that the program was effective in meeting patients’ information needs and likely to lead to positive patient outcomes. Before and after education older subjects did not perceive their knowledge to be as adequate as did younger subjects, especially for investigative tests and treatment categories.
The content of any education program should address priority information needs, including a focus on disease and treatment categories for patients with breast cancer. Significant before and after differences in patients’ perceived knowledge adequacy indicated that these 2 important areas were addressed. In fact, patients wanted information about all possible RT side effects, as others have reported. 24,37 Additional information about what treatment would accomplish, whether it is cancer, the likelihood of cure, whether all body parts are involved, what treatment would do in their body, and what week-to-week progress is was perceived as absolutely necessary by at least half of all patients as Cassileth 37 noted. However, significant before and after educations differences in patients’ perceived knowledge adequacy also were observed in areas believed to be of lesser importance, 25,27,34,35 including investigative tests, physical functioning, and psychosocial functioning.
Patients’ perceived knowledge levels before treatment suggest that a majority may have deliberately sought information before treatment as part of their coping process. In fact, subjects actively used 7 of 11 specific information-seeking strategies before the RT education. More of them looked for information in books and pamphlets than asked for information from doctors and nurses or patients, family, and friends. The remaining 4 information-seeking activities were not practiced by at least two thirds of the patients, suggesting they may not have been preferred coping strategies in this situation at that time.
There are assumptions among some nurses that more information is better for patients, that patients want complete information, and that more information reduces stress and enhances one’s coping abilities. That some patients did not want abundant information may be a coping strategy to be respected and not assumed to be a maladaptive form of coping. Patients may prefer minimal information because of illness severity, attentional fatigue, a reluctance to contribute to the decision-making process, difficulty understanding the information, or their unique coping pattern. Bagley-Burnett 3 believes nurses need to understand the concept of information-seeking, recognize information-seeking behaviors, develop skills to assess the amount and type of information desired by patients, and recognize the contextual and situational variables that influence a person’s desire for information. The subset of patients who wanted necessary information only, with or without some added details, may be served better with individualized teaching strategies. The challenge for nurses is to identify these patients expediently to customize their education. As patients progress through the disease process and their knowledge improves, their coping processes, too, may change so that periodic reassessment of information needs, preferences, and behaviors is desirable.
Patients wanting minimal information may self-select what information they accept and process. For example, a few subjects did not attend the group RT class even though their attendance was prescheduled. Nonattendance was evident among older subjects, more of whom preferred no more information than necessary or some added details. Alternatively, subjects who want as much information as possible should have accurate information made available through a variety of supplemental delivery mechanisms such as the Internet and interactive video modules, mechanisms that will not add extra burden to already scarce nursing resources. Not unlike the interactive video module used in this study, Degner 35 computerized an information needs measure allowing healthcare providers to individualize teaching and provide relevant and timely information to patients with breast cancer.
A simple prescription to meet the education needs for all patients is not possible, and nursing departments have limited resources to dedicate to patient education. Differing information preferences and information-seeking activities among age groups should be reflected within educational programs tailored to meet the needs of specific age groups. Older subjects in this study were less likely to use a computer or the Internet, compared with other age groups. Proportionately they represent the largest group of patients with breast cancer presenting for RT, underscoring the importance of accommodating their preferences about the timing, content, and methods of delivery for their education. Early assessment of information preferences for individuals and identification of priority information needs among age groups is critical so that resources can be targeted to maximize effectiveness. 2,3,24,27
Additional research is needed to investigate and compare new educational strategies with traditional methods and the possible influence of rural/urban residency and high school/postsecondary levels of education on perceived knowledge adequacy. How demographic and disease-related characteristics alter the amount of information desired as well as strategies used to seek that information also deserves further investigation.
- Questionnaires selected to measure perceived knowledge adequacy and information-seeking activities in this study yielded useful data. However, the ISQ used to measure information preferences provided the participant with 2 or 3 response choices for each statement. More representative data to depict the distribution of information preferences about decision making may have resulted with use of a 5-point scale.
- More rigorous study methods, including an experimental design, and the use of a valid reliable test measuring actual RT-related knowledge would have allowed cause-and-effect relationships to be explored and improved generalizability of the findings. The N of 79 subjects was large enough to detect significant differences in the adequacy of perceived knowledge between groups but was not representative of the clinic population (older patients were under-represented).
The authors thank Christianne Orton for her assistance preparing the manuscript. The contributions of Harry Plummer, Jean Collins, Ryan Endersby, Paula Fishman, Barb McReavey, Dorothy Norris, Ambreen Patel and Trisha Taylor are recognized.
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