- Email: [email protected]
Does reading about stroke increase stroke knowledge?
Patient Education and Counseling 51 (2003) 207–215
Does reading about stroke increase stroke knowledge? The impact of different print materials Kathleen M. Mazora,*, Susan Billings-Gagliardib a
Meyers Primary Care Institute, University of Massachusetts Medical School and Fallon Healthcare System, 630 Plantation Street, Worcester, MA 01605, USA b Department of Cell Biology, University of Massachusetts Medical School, 55 Lake Avenue North, Worcester, MA 01655, USA Received 18 April 2002; received in revised form 15 October 2002; accepted 17 October 2002
Abstract The purpose of this study was to determine whether print materials on stroke resulted in increased knowledge in a sample of lay people. One hundred and seventy-seven participants received (at random) one of five versions of a stroke information packet, or a control packet on colorectal cancer. Participants rated the materials on readability, understandability and usefulness immediately after reading. After a delay of 18 days on average, participants answered questions assessing stroke knowledge. Ratings of all packets were generally positive; however, stroke knowledge scores were significantly higher for the stroke information groups compared to the control group only for knowledge of causal mechanisms (stroke pathophysiology). While there was some indication that the fictionalized material on stroke was more effective than the expository materials, overall the impact of print materials on stroke knowledge, measured after a delay of at least 1 week, was minimal at best. Further research is needed to determine whether fictional contexts make some information more memorable. # 2002 Elsevier Science Ireland Ltd. All rights reserved. Keywords: Health education; Patient education; Stroke prevention
1. Introduction The prevalence of stroke, its high mortality rates and the likelihood that survivors will suffer severe disability, together with the availability of increasingly effective methods to lower stroke risk and intervene in acute stroke, all argue for the importance of stroke knowledge among the general population. However, a number of recent studies report that many lay people, including those at higher risk, have poor knowledge of stroke risk factors, warning signs and appropriate response to warning signs [1–7]. While knowledge alone may be insufficient to ensure appropriate preventive and responsive behaviors [8], knowledge is a prerequisite for appropriate actions. Thus, it is not surprising that many individuals and organizations have called for increased community and patient education efforts concerning stroke [6–12]. Print materials are used widely in patient and public health education efforts. However, relatively few studies * Corresponding author. Tel.: þ1-508-791-7392; fax: þ1-508-595-2200. E-mail address: [email protected] (K.M. Mazor).
have evaluated the impact of such materials [13] and a number of those that have focused on materials designed for patients diagnosed with or in treatment for specific conditions [14–19], or on health risks other than stroke [20–22]. To our knowledge, there have been no published studies evaluating print materials containing information about stroke risk reduction and identification of warning signs for the people who have not experienced a stroke. If people retain information presented in print materials, then the provision of such materials could be an efficient intervention for increasing stroke knowledge. However, if such materials do not result in increased knowledge long-term, then clinicians and educators must be aware that providing print materials alone should not be considered a sufficient effort. Finally, it is important to determine whether varying specific characteristics of print information differentially impacts retention of information, so that materials can be developed so as to be maximally effective. The purposes of this study were to: (1) assess lay people’s response to a variety of print materials on stroke; (2) determine whether reading print materials about stroke increased lay people’s stroke knowledge as measured approximately
0738-3991/$ – see front matter # 2002 Elsevier Science Ireland Ltd. All rights reserved. PII: S 0 7 3 8 - 3 9 9 1 ( 0 2 ) 0 0 2 1 8 - 5
208
K.M. Mazor, S. Billings-Gagliardi / Patient Education and Counseling 51 (2003) 207–215
2 weeks post-intervention; and (3) to determine whether different presentations of the same body of information differentially impacted knowledge.
medical expertise or special stroke knowledge (e.g. physicians, medical students and nurses) were excluded from the analysis. All participants were paid a stipend of US$ 25. The study was approved by the Institutional Review Board.
2. Methods
2.2. Materials
The study used a multi-group experimental design, with random assignment to intervention conditions to evaluate the impact of the interventions. In part 1, each study volunteer was given, at random, one of six packets containing either print materials on stroke knowledge (in one of five possible formats), or a control packet (with print materials on colon cancer). Approximately 5 days after part 1 was returned to the research office, part 2 was mailed to the participant. Part 2 contained a set of test items on stroke knowledge. This mailing was the same for all participants, regardless of the materials they had received in part 1.
Six sets of print informational materials were developed: five with information on stroke and a sixth with information on colorectal cancer, which served as a control condition. The purpose of including a reading on colorectal cancer was to maximize the similarity of the tasks completed by participants in part 1, without providing any stroke-related information to those in the control group. Key characteristics of the materials are summarized in Table 1. Excerpts from the six different print materials are included in Appendix A. The content and wording of the packets was determined in part based on recommendations of the Brain Attack Coalition, a group of government, medical and non-profit organizations promoting stroke education. One of their efforts was to agree upon a common definition of the key stroke warning signs and language that would be used to present these to the public. All readings were developed by the authors, one of whom is a neuroanatomist with expertise in stroke. The fictional condition was based on an actual case history as described to one of the authors by a family member. Readability of the six information packets was assessed with both the Flesch index [23] and the SMOG index [24]. For the Flesch index, 100 is the highest possible score, reflecting greatest reading ease. For the SMOG index, readability is reported on a grade equivalent scale. The test items were developed jointly by the two authors, based on information presented in the five stroke readings.
2.1. Participants A convenience sample of 177 volunteers participated in the study. All participants were aged 18 years and able to read and write English. Recruitment was done by the study authors, the research assistant and a volunteer who focused on recruiting from church-related groups and civic organizations. The study was described to potential participants as focusing on medical communication. They were told that participation would involve a reading, followed by a set of questions about the reading. They were also informed that they would be asked to complete a second questionnaire approximately 1 week later. While participants were told that part 2 would include additional questions, these questions were not referred to as a test. Volunteers indicating Table 1 Characteristics and ratings of print materials Condition
Distinguishing features
Flesch readability (100 ¼ easiest)
Control
Content focus: colorectal cancer risk and prevention. Format comparable to short stroke packet Short, factual. Included definitions, information on risk, risk reduction, warning signs and appropriate response As in short, with additional information on the pathophysiology of stroke As in causal, with the addition of analogies to explanations As in causal, with additional detailed information on stroke types, pathophysiology, and rehabilitation Fictionalized first-person account of witnessing a stroke
61
9
70
Short
Causal Causal þ analogy Long/detailed
Fiction
SMOG readability (grade level)
Word count
Very easy to read (%)
Understood completely (%)
Very useful information (%)
958
84
84
55
9
846
78
75
63
61
11
1289
59
74
44
61
10
1453
67
70
59
62
10
2065
52
55
62
81
8
2426
68
90
55
All five stroke information packets included a ‘‘risk factor quiz’’ containing questions intended to help the reader self-assess risk for stroke, and an identical table of stroke warning signs (using the wording approved by the Brain Attack Coalition) with instructions to call 911 immediately if any signs occurred.
K.M. Mazor, S. Billings-Gagliardi / Patient Education and Counseling 51 (2003) 207–215
The items covered knowledge about risk factors, causal mechanisms, warning signs and response to stroke symptoms. All five stroke conditions contained equivalent information with respect to the test items, with one exception (condition 2—short), where for two items information was implied but not explicitly stated in the reading. The test included both open-ended and multiple choice questions. Subtest scores were calculated separately for each of these areas as follows. Risk factors: 22 multiple choice items, worth 1 point each; causal mechanisms (stroke pathophysiology): 7 multiple choice items worth 1 point each; warning signs: 1 open-ended item, scored 2 ways; warning signs (all): 1 point per category for reference to each of the following categories of signs, for a maximum of 5 points—(a) severe or sudden headache; (b) visual problems; (c) any reference to weakness or numbness; (d) any reference to problems with speaking or understanding; and (e) any reference to problems with coordination, walking, balance or dizziness; warning signs (frequent) [25]: 1 point per category for each of the following, for a maximum of 7 points—(a) sudden onset; (b) one-sided symptoms; (c) weakness in arms or legs; (d) weakness in face; (e) numbness in arms or legs; (f) numbness in face; and (g) language difficulty or trouble speaking; response to stroke: 4 multiple choice items worth 1 point each and 2 open-ended items, worth 1 point each for a maximum of 6 points. Total score equals the sum of the following subscores: risk factors, causal mechanisms, warning signs (all) and response to stroke, with the maximum possible score equal to 40. All readings and test items were independently reviewed by two stroke experts. In part 2, participants also indicated their confidence in their ability to recognize the signs of stroke in themselves, using a five-point Likert-type scale (item wording: ‘‘How confident are you that you could recognize the signs of stroke in yourself?’’). 2.3. Procedure In part 1 of the study, each participant received one of the six possible information packets, assigned at random. Most packets were distributed in person; a small number were mailed to home addresses after the subject agreed to participate. Participants read the materials and completed the readings at their convenience, in a setting of their choosing. This was considered a realistic approximation of how non-patients are likely to review health information. Participants were instructed to read the packet and to answer the questions following the readings. Three rating scale items were included; one each on reading ease, understandability and usefulness of the materials (on a five-point Likert-type scale). Two open-ended items were included to solicit suggestions for improvements to the packets and participants’ perceptions of strengths of the packet. A small number of items were also included asking for age, ethnicity, gender, education and prior experience with stroke (wording for question on experience with
209
stroke: ‘‘What, if any, direct experience have you had with stroke, or with people who have had strokes? Please describe briefly.’’). Participants returned all materials from part 1 (including the informational packet) before receiving part 2, which contained the stroke knowledge test. Part 2 was mailed to respondents approximately 5 days after part 1 was received at the research office. Part 2 was the same for all participants, regardless of the reading they had received in part 1. 2.4. Analysis Because of the distribution of participants’ ratings of the materials, which were skewed towards the high end of the scale, ratings were re-coded to result in two categories (highest possible rating versus all other ratings) prior to analysis. A Chi-square test was used to evaluate differences between packets in respondents’ ratings of reading ease, understandability and usefulness. Bonferroni contrasts were constructed for planned pairwise comparisons between the control group mean and the mean for each of the five stroke information conditions (separately) on the stroke knowledge subscores and total score. We also compared the mean of all five stroke information conditions (combined) to the mean for the control condition. The chosen significance level (0.05) was corrected for the number of comparisons to be made (for each dependent variable separately) using the Bonferroni adjustment. This resulted in an adjusted significance level of 0.008. All contrasts were adjusted for age, education and experience with stroke. For the analysis, prior experience with stroke was coded dichotomously, with close experience defined as reporting of a first degree relative or close friend who had had a stroke. All mean differences were evaluated using one-tailed tests of significance (t-statistics) in order to test whether the means for the intervention groups were higher than the means for the control group. A power analysis was conducted, assuming sample sizes of 30 per group, a 0.01 significance level and a one-tailed test of the magnitude of the difference between two means. Results found 76% power for detecting large differences between means (an effect size of 0.8; this is Cohen’s d, a standardized mean difference, expressed in standard deviation units). Applying these results to the findings reported here, an effect size of 0.8 translates to a difference of approximately one point for the shorter subtests (causal mechanisms, all warnings signs and response); approximately two point differences on the longest subtest (risk) and approximately a three point difference overall (total score). While practical significance is more subjective than statistical significance, we believe that differences smaller than this may be interesting, but would have limited practical significance. The relationship between confidence in ability to recognize warning signs and knowledge of warning signs was assessed using the Pearson correlation. A one-tailed test of
210
K.M. Mazor, S. Billings-Gagliardi / Patient Education and Counseling 51 (2003) 207–215
significance was used, as we hypothesized that confidence would be positively related to knowledge. Because of the wide variation in the number of days between completion of parts 1 and 2, the correlation between interval length (in days) and total score was also computed. Again, a one-tailed test of significance was used, as it was hypothesized that a greater delay would be associated with lower scores. For all statistical tests, a P-value of 0.05 was considered significant.
3. Results The 177 lay people in this study described themselves as follows: 58% female; 41% under age 40 years; 30% aged 40–49 years; 29% aged 50 years; 11% indicated a high school degree or less as the highest level of education, 24% reported some college and 63% indicated they were college graduates; 96% reported their ethnicity as White; 2% as Black and 1% as Hispanic and 1% as Asian; 18% reported having had close experience with stroke, 36% indicated some experience with stroke and 47% indicated no experience with stroke. Chi-square tests conducted to determine whether condition (packet type) was independent of each of the above conditions (re-coded to dichotomous categories due to the small numbers per condition) found that randomization was successful with respect to these variables. The elapsed time between completing part 1 (reading and rating the informational materials) and completing part 2 (the stroke knowledge test) ranged from 7 to 58 days; the mean number of days elapsed was 18.4; the median number of days was 16 and the modal number of days was 14. The correlation between total stroke knowledge and number of days elapsed between reading the materials and completing the stroke knowledge test (excluding those in the control condition) was not significantly different from zero (r ¼ 0:06, P ¼ 0:24, N ¼ 143). Participants’ ratings of the six packets of written materials are summarized in Table 1. No differences between the
packets were found in terms of ratings of readability or usefulness. However, a statistically significant difference was found on understandability (w2 ¼ 11:6, P ¼ 0:04), with the fictional materials the most widely understood. Means and standard deviations for the various subscores and total score on the stroke knowledge test by condition are presented in Table 2. The planned pairwise comparisons of the control group mean to the mean for each of the stroke information conditions individually revealed only two significant differences, both on the subtest of knowledge of stroke pathophysiology. On this subtest, the means for participants in the causal condition and in the long/detailed condition stroke were each significantly higher than the mean for participants in the control condition. No statistically significant between-group differences were found for scores on risk factors, appropriate response to stroke, warning signs or total score. Comparisons of the combined intervention group mean with the control group mean found no statistically significant differences on any of the subtests or on total score. One post hoc question of particular interest was whether participants in the fiction condition had better recall of the most frequent stroke warning signs (sudden onset of onesided weakness or numbness of arm, leg or side of face and trouble speaking), as these were the warning signs observed by the narrator in the fictional reading. Therefore, the mean for the fiction participants was compared to the mean for all other participants (control group and the four other stroke information conditions) using the Scheffe´ critical value, as is appropriate for post hoc comparisons made after review of the data. While the fiction condition mean on the frequent warning signs was higher than the mean for all other groups combined (2.65 compared to 1.77) this difference did not achieve statistical significance. Positive correlations between knowledge of stroke warning signs and respondents’ self-assessed confidence in their ability to recognize stroke warning signs were found. For the score based on all warning signs: r ¼ 0:29, P < 0:01; for the score based on the most frequent warning signs: r ¼ 0:37, P < 0:01.
Table 2 Stroke knowledge means and standard deviations by condition Condition (maximum possible points) Control (N ¼ 31) Short (N ¼ 32) Causal (N ¼ 27) Causal þ analogy (N ¼ 27) Long/detailed (N ¼ 29) Fiction (N ¼ 31) Five stroke conditions combined (N ¼ 146) Total (N ¼ 177)
Risk factors (22) 16.1 16.4 17.0 16.6 16.9 17.2 16.8
(2.97) (2.21) (2.50) (2.50) (2.31) (2.83) (2.47)
16.7 (2.57)
Causal mechanisms (7) 5.39 5.88 6.19 5.74 6.17 5.16 5.82
(1.56) (1.04) (0.92) (1.13) (0.80) (1.29) (1.11)
5.74 (1.21)
Warning signs All (5)
Frequent (7)
2.74 2.72 2.41 2.78 2.86 2.61 2.68
2.03 1.72 1.56 1.74 1.79 2.65 1.90
(1.21) (1.25) (1.01) (1.15) (1.38) (1.11) (1.19)
2.69 (1.19)
Mean values in italics are significantly higher than the control group mean (in bold) for that subtest.
(1.82) (1.17) (0.80) (1.06) (1.68) (1.68) (1.38)
1.93 (1.46)
Response (6)
Total (40)
4.87 5.03 5.11 5.15 5.31 5.16 5.15
29.10 30.06 30.70 30.22 31.28 30.13 30.47
(1.26) (0.97) (1.09) (0.82) (0.71) (0.73) (0.87)
5.10 (0.95)
(5.20) (3.68) (3.00) (3.99) (3.48) (3.95) (3.63)
30.23 (3.96)
K.M. Mazor, S. Billings-Gagliardi / Patient Education and Counseling 51 (2003) 207–215
4. Discussion The findings of this study suggest that at least for the print materials developed and tested here, participants’ ratings did not discriminate between the materials in terms of reading ease or usefulness, in spite of substantial differences between packets in terms of length, readability indices, informational content, and style. Participants’ ratings of understandability did show differences across conditions, with the fiction condition rated most highly. These results are consistent with recommendations in the literature that readability indices not be the sole criterion for determining the appropriateness or quality of print materials [26]. The stroke information packets studied here had minimal or no impact on stroke knowledge measured 1 weeks postintervention, even though materials varied in length, amount of information, level of detail, use of analogies and use of the narrative voice. This suggests that print materials of the sort used here may not be an effective means of increasing stroke knowledge in the general public, at least not without supplemental instruction or repeated exposure. The circumstances of this study provided relatively favorable conditions for a test of such materials. As a group, participants were more highly educated than the public at large (88% reported some college education) and therefore the readability of the materials studied was well within the comfortable reading range of virtually all participants. Further, it can be assumed that most of these participants were accustomed to using print materials in their daily lives. In fact, ratings and comments confirm a favorable response to the materials. The fact that all participants answered all three of the questions for the readings, and many made extensive and apparently well-thought out comments, suggest that participants actually read the materials, in many cases quite carefully. Thus, if this group of lay people did not recall the information presented, it is possible that the impact of print materials on less motivated, less educated people could be even less. However, it is also possible that less educated lay people might discover more new information in these readings and thus might well show greater increases in knowledge than the participants in this sample showed. Unfortunately, we are not able to determine which effect of educational level is more likely. One possible reason for the lack of a stronger effect of the print materials used here on knowledge is the relatively long interval (18 days on average, 7 days minimum) between reading the materials and completing the test. Including such an interval between the intervention and measurement was intentional, for if stroke knowledge is not retained it is unlikely to be useful. However, the fact that we did not assess participants’ retention of the information immediately after reading the materials is a limitation of the study, as we are unable to evaluate whether learning did occur initially, but was not maintained. A second limitation of the study is that a number of the multiple choice test items were relatively easy for this
211
sample and thus the sensitivity of the test to improvements in knowledge (as measured by these items) may have been limited. The average proportion correct across all multiple choice items combined was 0.79. However, while the multiple choice items were relatively ‘‘easy’’, responses to the open-ended item on recall of warning signs showed room for improvement, even in this sample. For instance, only 7% overall were able to name at least one stroke warning sign from each of the five major categories. With respect to response to stroke symptoms, only 70% indicated they would call 911 if someone is having a stroke. As is the case whenever multiple choice items are used, guessing is likely to be a factor and to have the effect of reducing the difficulty of the multiple choice items. In contrast, on openended, free response items like the item used here to assess knowledge of warning signs, guessing is likely to have less of an impact; for a response to be correct, one must generate the correct response rather than simply recognizing the correct response from a list. It is not possible to determine whether the content of the items (i.e. warning signs versus pathophysiology) or the format (multiple choice versus free response/open-ended) was responsible for the fact that the percentage correct was relatively high for the multiple choice-based subtests. A longer test could provide a partial solution to these issues and future research efforts in this area would do well to include additional item development efforts. The results reported here are likely to be generalisable to comparable populations, specifically, relatively well-educated, relatively young (under age 50 years) Whites. However, the conclusions drawn from our results may not be generalisable to other populations. In addition, our small sample size makes it impossible to assess whether stroke knowledge overall (in the absence of any intervention) is associated with educational achievement, ethnicity or age. This study did not address whether the print materials used here would have had greater impact on stroke knowledge had they been used in conjunction with other interventions, such as counseling or consultation with providers. In addition, the current study did not address whether illustrations could facilitate comprehension and retention of information, a possibility that was suggested by study participants in their comments on the materials. Further research in this area is needed. The results of the post hoc analyses suggest potentially fruitful directions for future research. Among the most intriguing findings is that respondents in the fiction condition seemed to recall the warning signs portrayed by the fictional patient more frequently than did participants in the other groups. While this difference did not achieve statistical significance when evaluated using Scheffe´ contrasts, there was a difference of almost one point between the fiction condition mean and the mean for all other conditions, a result that we find suggestive. The fiction condition contained an emotional element lacking in the other stroke information conditions. The description of the stroke victim
212
K.M. Mazor, S. Billings-Gagliardi / Patient Education and Counseling 51 (2003) 207–215
may have facilitated visualization of some signs and consequences of stroke. Any or all of these factors may have facilitated recall. The design and power of the current study may have limited our ability to investigate the impact of fiction as a means of communicating about stroke, but our findings suggest this is area worthy of further investigation. If further research confirms the positive impact of narrative accounts on stroke knowledge, this would have important implications for development of educational materials. 4.1. Practice implications Clinicians and public health educators should be aware that provision of print materials alone, without supplemental instruction, counseling or follow up, may not be an effective means of communicating health information. Whether it is
possible to develop print materials that lead to better learning and recall of key information is not clear. However, additional research on this topic, especially with respect to the use of fiction, appears warranted.
Acknowledgements This work was supported in part by a Joseph P. Healey grant. We thank Nancy M. Fontneau, MD and George Hademenos, PhD, for helpful comments on the stroke information packets and test items used in the study, Hariharan Swaminathan, PhD, for advice on statistical analyses and Laura Sefton for administrative assistance. We also thank the editor and two anonymous reviewers for their thoughtful comments and suggestions.
Appendix A. Excerpts from print materials Condition
Excerpt
Control
What is colon cancer? The colon is the last part of the long muscular tube in which food is digested. After digestion is completed in the colon, the waste matter that remains goes into the rectum and then passes out of the body during a bowel movement as the stool (feces). Colon cancer occurs when cells that make up the wall of the colon begin to grow out of control. It often starts as small non-cancerous tumors called polyps that have thin stalks attached to the inner lining of the colon and grow into the center of the hollow digestive tube. One type of polyp has a tendency to become cancerous. How might I be alerted that I could have colon cancer? These are some of the symptoms that patients with colon cancer may experience. However, the early stages of colon cancer often produce no symptoms. Six common symptoms that may suggest colon cancer. A change in bowel habits such as diarrhea, constipation, or narrowing of the stool that lasts for more than a few days. A feeling that you need to have a bowel movement that is not relieved by doing so. Rectal bleeding or blood in the stool. Cramping or steady pain in the area of the stomach or ‘‘gut’’. Decreased appetite, or weakness and fatigue, with no known cause. Jaundice (a yellow green discoloration that is visible in the skin or the white of the eye).
Short
What is a stroke? Strokes are injuries to the brain produced by problems involving its blood supply. There are two kinds of strokes: ischemic strokes in which part of the brain suddenly does not get enough blood, and hemorrhagic strokes in which there is sudden bleeding into or around the brain. After a stroke, survivors are often left with life-long neurologic impairments that can range from mild to severe.
Causal
Ischemic strokes occur when a brain artery is suddenly blocked. Blockage is often caused by a blood clot that plugs up the artery, or by accumulations of fatty material in the wall of the artery (the medical term for this is atherosclerosis). When little or no blood flows to some part of the brain, that region becomes ischemic. Parts of the brain that are ischemic stop working correctly. This usually causes the patient to develop a neurologic problem—for instance, sudden weakness of one arm. The kind of problem depends on the specific part of the brain that is affected. If the blockage of the artery is temporary, the brain will usually work normally again once blood flow returns. If blood flow is cut off for too long, the affected part of the brain will die. When this happens, the patient’s neurologic problems become permanent, because the body cannot re-grow parts of the brain that have died. This is why strokes produce life-long rather than just temporary disability, and why different patients who have had strokes have different kinds of problems.
K.M. Mazor, S. Billings-Gagliardi / Patient Education and Counseling 51 (2003) 207–215
213
Appendix A. (Continued ) Condition
Excerpt Hemorrhagic strokes occur when a brain artery suddenly bursts. When blood squirts into the brain or around the brain, this injures the brain by tearing or squeezing it. The injured parts of the brain stop functioning and may die, which gives the patient permanent problems.
Causal þ analogy
Ischemic strokes occur when a brain artery is suddenly blocked. Blockage is usually caused by a blood clot that plugs up the artery, or by accumulations of fatty material in its wall (the medical term for this is atherosclerosis). You can imagine what happens during an ischemic stroke by making this simple comparison. If some ‘junk’ in the water or a build-up of mineral deposits suddenly blocked the water pipe that feeds your kitchen, no water would flow to the dishwasher or disposal. These fixtures might have worked fine last night, but now nothing happens when you turn them on, because suddenly there is no water getting to them. Similarly, if a clot suddenly blocks blood flow to one region of the brain, that part will immediately stop working. This usually causes the patient to develop an obvious problem, like sudden weakness of an arm or leg. The kind of problem depends on the specific part of the brain that has its blood cut off (that is, has become ischemic). If the blockage is temporary, the brain will usually work normally again once blood flow returns. If blood flow is cut off for too long, the affected part of the brain will die. When this happens, the patient’s neurologic problems become permanent, because the body cannot re-grow parts of the brain that have died. This is why strokes produce life-long rather than just temporary disability, and why different patients who have had strokes have different kinds of problems. Hemorrhagic strokes occur when a brain artery suddenly busts. Brain arteries are like fire hoses in that both carry a lot of liquid at high pressure. If a hose bursts when firemen are putting out a house fire, water will squirt everywhere uncontrollably, breaking-up furniture, tearing the drapes, and even making holes in the walls. When a brain artery bursts the same thing happens, only in this case it is the brain that is being torn or squeezed. Injured parts of the brain stop functioning and may die, which leaves the patient with permanent neurologic problems.
Long/detailed
Ischemic strokes account for 80% of all strokes. A little about the circulation of the brain. The brain requires a continuous supply of blood in order to work correctly. It receives blood from two pairs of large blood vessels, the carotid and vertebral arteries, that run up to the brain through the side and back of the neck, and then branch to form the smaller vessels that go to different parts of the brain. Normal function of the brain depends on an almost continuous blood flow through all these vessels. This is the way that the brain receives oxygen and nutrients, and gets rid of its wastes. If an artery is blocked, then blood cannot reach a particular part of the brain and the affected part is unable to do its job properly. Each part of the brain carries out specific functions, so when a specific area of the brain is deprived of blood, the affected person may find that she/he cannot perform a certain task. For instance, an area on the left side of the brain is responsible for moving the right arm and hand. If this brain area suddenly loses blood flow (a doctor would say it ‘‘becomes ischemic’’) then the person would notice that suddenly her/his right arm and hand became weak so that she/he could not hold onto things. Two major ways arteries can become blocked: (1) atherosclerosis; and (2) blood clots. (1) Atherosclerosis is an accumulation of fatty materials inside the wall of an artery. It can form a thickening that extends into the hollow central part of the artery, narrowing the vessel and restricting blood flow through it. (2) Blood clots are usually helpful because stop bleeding when we cut ourselves. However, if a blood clot forms inside the heart or an artery it can cause major problems for the brain. Here’s how. After a heart attack in which the heart wall has been damaged, or in abnormal situations where the heart does not contract normally, a clot can form inside the heart. If a piece of the clot breaks loose from the heart, it can be carried in the blood to the brain. When that piece of clot gets into a brain artery that is too narrow to let it pass, it will get stuck and slow blood flow by acting like a plug. As a result, some part of the brain is deprived of blood, and it becomes ischemic. Other places that blood clots form are on the inside an artery whose wall is damaged by advanced atherosclerosis. This commonly occurs inside the carotid artery where it runs through the neck. If a piece of clot breaks off from there, it will travel directly into the brain and can plug up a brain artery in the same way as a clot coming from the heart.
214
K.M. Mazor, S. Billings-Gagliardi / Patient Education and Counseling 51 (2003) 207–215
Appendix A. (Continued ) Condition
Excerpt If the lack of blood flow is transient (lasting just a few minutes), the brain will usually work normally again once its blood flow returns. However, if blood flow is cut off for longer, it is likely that that affected parts of the brain will die. When this happens, we say that the person has had a stroke. Because the body has no way to make new brain tissue to replace the parts that have died, the injury to the brain produced by a stroke is permanent. Hemorrhagic strokes account for about 20% of all strokes. Hemorrhagic strokes occur when a blood vessel in the brain suddenly bursts. When blood squirts out into the brain or into the tissue layers that surround the brain, it can injure the brain by compressing and tearing it. Injured parts of the brain stop functioning and may die, which leaves the patient with permanent neurologic problems.
Fiction
‘‘Mrs. Hewitt?’’ she said. ‘‘Right this way.’’ She lead us into an examination room, and not 2 min later one of the emergency room doctors came in and examined Bill. He asked me some questions, then he confirmed what I had thought—Bill was having a stroke. ‘‘You were absolutely right to bring him in right away. We’ll do some tests, so we know what kind of stroke it is, and then we’ll do what we can to prevent or at least minimize the damage.’’ They took Bill away. I filled out forms until it seemed like there was nothing more they could possibly need to know, and then I waited. And pictured what was going on in Bill’s brain. The odds were that he was having an ischemic stroke. Ischemic strokes are by far the most common kind of stroke. Also, since Bill had had a heart attack 4 years earlier, we both knew he was at greater risk for having a stroke, and especially for having an ischemic stroke. This is because both are caused by blocked blood vessels. In a heart attack, the blockage prevents blood from getting to part of the heart. In a stroke, the blockage prevents blood from getting to part of the brain. Of course it was still possible that Bill’s stroke was due to a ruptured vessel that was bleeding into his brain. This is called a hemorrhagic stroke. The problem was that until the doctors knew which kind of stroke Bill was having, they would not know how to treat it.
All five stroke conditions also contained two additional sections: (1) a list of stroke warning signs with instructions to call 911; and (2) a self-quiz, with questions for assessing personal risk factors and brief advice on risk reduction. In the fiction condition the narrator introduced these two sections by saying, ‘‘And so when I send out holiday cards this year, I’m enclosing the following information on stroke warning signs and a copy of a stroke risk quiz. People may think it’s a little odd, but I don’t care if there’s a chance I can help even one person avoid having a stroke or being disabled by one.’’
References [1] Goldstein LB, Gradison M. Stroke-related knowledge among patients with access to medical care in the stroke belt. J Stroke Cerebrovasc Dis 1999;8(5):349–52. [2] Hux K, Rogers T, Mongar K. Common perceptions about strokes. J Community Health 2000;25:47–65. [3] Kothari R, Sauerbeck L, Jauch E, et al. Patients awareness of stroke signs, symptoms, and risk factors. Stroke 1997;28:1871–5. [4] Morgenstern LB, Steffen-Batey L, Smith MA, Moye LA. Barriers to acute stroke therapy and stroke prevention in Mexican Americans. Stroke 2001;32:1360–4. [5] Pancioli AM, Broderick J, Kothari R, et al. Public perception of stroke warning signs and knowledge of potential risk factors. JAMA 1998;279:1288–92. [6] Samsa GP, Cohen SJ, Goldstein LB, Bonito AJ, Duncan PW, Enarson C, et al. Knowledge of risk among patients at increased risk for stroke. Stroke 1997;28:916–21. [7] Schroeder EB, Rosamond WD, Morris DL, Evenson KR, Hinn AR. Determinants of use of emergency medical services in a population with stroke symptoms: the Second Delay in Accessing Stroke Healthcare (DASH II) Study. Stroke 2000;31:2591–6.
[8] Williams JE, Rosamond WD, Morris DL. Stroke symptom attribution and time to emergency department arrival: the delay in accessing stroke healthcare study. Acad Emerg Med 2000;7:93–6. [9] Goldstein LB, Bian J, Samsa GP, Bonito AJ, Lux LJ, Matchar DB. New transient ischemic attack and stroke: outpatient management by primary care physicians. Arch Intern Med 2000;160:2941–6. [10] Spilker J. The importance of patient and public education in acute stroke. In: Proceedings of a National Symposium on Rapid Identification and Treatment of Acute Stroke, August 1997. The National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health. Available at www.ninds.nih.gov (NINDS). [11] Lacy CR, Suh DC, Bueno M, Kostis JB. Delay in presentation and evaluation for acute stroke: Stroke Time Registry for Outcomes Knowledge and Epidemiology (S.T.R.O.K.E.). Stroke 2001;32:63–9. [12] Williams L, Bruno A, Rouch D, Marriott D. Stroke patients’ knowledge of stroke: influence on time to presentation. Stroke 1997; 28:912–5. [13] Arthur VA. Written patient information: a review of the literature. J Adv Nurs 1995;21:1081–6. [14] Frost MH, Thompson R, Thiemann KB. Importance of format and design in print patient information. Cancer Pract 1999;7:22–7.
K.M. Mazor, S. Billings-Gagliardi / Patient Education and Counseling 51 (2003) 207–215 [15] Berner E, Partridge E, Baum S. The effects of the PDQ patient information file (PIF) on patients’ knowledge, enrollment in clinical trials and satisfaction. J Cancer Educ 1997;72:121–5. [16] Barlow JH, Wright CC. Knowledge in patients with rheumatoid arthritis: a longer term follow-up of a randomized controlled study of patient education leaflets. Br J Rheumatol 1998;37:373–6. [17] Burton AK, Waddell G, Tillotson KM, Summerton N. Information and advice to patients with back pain can have a positive effect. A randomized controlled trial of a novel educational booklet in primary care. Spine 1999;24:2484–91. [18] Higgins L, Ambrose P. The effect of adjunct questions on older adults’ recall of information from a patient education booklet. Patient Educ Couns 1995;25:67–74. [19] Webber D, Higgins L, Baker V. Enhancing recall of information from a patient education booklet: a trial using cardiomyopathy patients. Patient Educ Couns 2001;44:263–70.
215
[20] O’Loughlin J, Paradis G, Meshefedjian G. Evaluation of two strategies for heart health promotion by direct mail in a low-income urban community. Prev Med 1997;26:745–53. [21] Davis D. ‘‘Understanding AIDS’’—the national AIDS mailer. Public Health Rep 1991;106(6):656–62. [22] Kirby D, Harvey PD, Claussenius D, Novar M. A direct mailing to teenage males about condom use: its impact on knowledge, attitudes and sexual behavior. Fam Plann Perspect 1989;21:12–8. [23] Flesch R. A new readability yardstick. J Appl Psychol 1948;32:221–33. [24] McLaughlin GH. SMOG grading—a new readability formula. J Reading 1969;12:639–46. [25] Bogousslavsky J, Melle GV, Regli F. The Lausanne stroke registry: analysis of 1000 consecutive patients with first stroke. Stroke 1988;19:1083–92. [26] Meade CD, Smith CF. Readability formulas: cautions and criteria. Patient Educ Couns 1991;17:153–8.
Does reading about stroke increase stroke knowledge? The impact of different print materials Kathleen M. Mazora,*, Susan Billings-Gagliardib a
Meyers Primary Care Institute, University of Massachusetts Medical School and Fallon Healthcare System, 630 Plantation Street, Worcester, MA 01605, USA b Department of Cell Biology, University of Massachusetts Medical School, 55 Lake Avenue North, Worcester, MA 01655, USA Received 18 April 2002; received in revised form 15 October 2002; accepted 17 October 2002
Abstract The purpose of this study was to determine whether print materials on stroke resulted in increased knowledge in a sample of lay people. One hundred and seventy-seven participants received (at random) one of five versions of a stroke information packet, or a control packet on colorectal cancer. Participants rated the materials on readability, understandability and usefulness immediately after reading. After a delay of 18 days on average, participants answered questions assessing stroke knowledge. Ratings of all packets were generally positive; however, stroke knowledge scores were significantly higher for the stroke information groups compared to the control group only for knowledge of causal mechanisms (stroke pathophysiology). While there was some indication that the fictionalized material on stroke was more effective than the expository materials, overall the impact of print materials on stroke knowledge, measured after a delay of at least 1 week, was minimal at best. Further research is needed to determine whether fictional contexts make some information more memorable. # 2002 Elsevier Science Ireland Ltd. All rights reserved. Keywords: Health education; Patient education; Stroke prevention
1. Introduction The prevalence of stroke, its high mortality rates and the likelihood that survivors will suffer severe disability, together with the availability of increasingly effective methods to lower stroke risk and intervene in acute stroke, all argue for the importance of stroke knowledge among the general population. However, a number of recent studies report that many lay people, including those at higher risk, have poor knowledge of stroke risk factors, warning signs and appropriate response to warning signs [1–7]. While knowledge alone may be insufficient to ensure appropriate preventive and responsive behaviors [8], knowledge is a prerequisite for appropriate actions. Thus, it is not surprising that many individuals and organizations have called for increased community and patient education efforts concerning stroke [6–12]. Print materials are used widely in patient and public health education efforts. However, relatively few studies * Corresponding author. Tel.: þ1-508-791-7392; fax: þ1-508-595-2200. E-mail address: [email protected] (K.M. Mazor).
have evaluated the impact of such materials [13] and a number of those that have focused on materials designed for patients diagnosed with or in treatment for specific conditions [14–19], or on health risks other than stroke [20–22]. To our knowledge, there have been no published studies evaluating print materials containing information about stroke risk reduction and identification of warning signs for the people who have not experienced a stroke. If people retain information presented in print materials, then the provision of such materials could be an efficient intervention for increasing stroke knowledge. However, if such materials do not result in increased knowledge long-term, then clinicians and educators must be aware that providing print materials alone should not be considered a sufficient effort. Finally, it is important to determine whether varying specific characteristics of print information differentially impacts retention of information, so that materials can be developed so as to be maximally effective. The purposes of this study were to: (1) assess lay people’s response to a variety of print materials on stroke; (2) determine whether reading print materials about stroke increased lay people’s stroke knowledge as measured approximately
0738-3991/$ – see front matter # 2002 Elsevier Science Ireland Ltd. All rights reserved. PII: S 0 7 3 8 - 3 9 9 1 ( 0 2 ) 0 0 2 1 8 - 5
208
K.M. Mazor, S. Billings-Gagliardi / Patient Education and Counseling 51 (2003) 207–215
2 weeks post-intervention; and (3) to determine whether different presentations of the same body of information differentially impacted knowledge.
medical expertise or special stroke knowledge (e.g. physicians, medical students and nurses) were excluded from the analysis. All participants were paid a stipend of US$ 25. The study was approved by the Institutional Review Board.
2. Methods
2.2. Materials
The study used a multi-group experimental design, with random assignment to intervention conditions to evaluate the impact of the interventions. In part 1, each study volunteer was given, at random, one of six packets containing either print materials on stroke knowledge (in one of five possible formats), or a control packet (with print materials on colon cancer). Approximately 5 days after part 1 was returned to the research office, part 2 was mailed to the participant. Part 2 contained a set of test items on stroke knowledge. This mailing was the same for all participants, regardless of the materials they had received in part 1.
Six sets of print informational materials were developed: five with information on stroke and a sixth with information on colorectal cancer, which served as a control condition. The purpose of including a reading on colorectal cancer was to maximize the similarity of the tasks completed by participants in part 1, without providing any stroke-related information to those in the control group. Key characteristics of the materials are summarized in Table 1. Excerpts from the six different print materials are included in Appendix A. The content and wording of the packets was determined in part based on recommendations of the Brain Attack Coalition, a group of government, medical and non-profit organizations promoting stroke education. One of their efforts was to agree upon a common definition of the key stroke warning signs and language that would be used to present these to the public. All readings were developed by the authors, one of whom is a neuroanatomist with expertise in stroke. The fictional condition was based on an actual case history as described to one of the authors by a family member. Readability of the six information packets was assessed with both the Flesch index [23] and the SMOG index [24]. For the Flesch index, 100 is the highest possible score, reflecting greatest reading ease. For the SMOG index, readability is reported on a grade equivalent scale. The test items were developed jointly by the two authors, based on information presented in the five stroke readings.
2.1. Participants A convenience sample of 177 volunteers participated in the study. All participants were aged 18 years and able to read and write English. Recruitment was done by the study authors, the research assistant and a volunteer who focused on recruiting from church-related groups and civic organizations. The study was described to potential participants as focusing on medical communication. They were told that participation would involve a reading, followed by a set of questions about the reading. They were also informed that they would be asked to complete a second questionnaire approximately 1 week later. While participants were told that part 2 would include additional questions, these questions were not referred to as a test. Volunteers indicating Table 1 Characteristics and ratings of print materials Condition
Distinguishing features
Flesch readability (100 ¼ easiest)
Control
Content focus: colorectal cancer risk and prevention. Format comparable to short stroke packet Short, factual. Included definitions, information on risk, risk reduction, warning signs and appropriate response As in short, with additional information on the pathophysiology of stroke As in causal, with the addition of analogies to explanations As in causal, with additional detailed information on stroke types, pathophysiology, and rehabilitation Fictionalized first-person account of witnessing a stroke
61
9
70
Short
Causal Causal þ analogy Long/detailed
Fiction
SMOG readability (grade level)
Word count
Very easy to read (%)
Understood completely (%)
Very useful information (%)
958
84
84
55
9
846
78
75
63
61
11
1289
59
74
44
61
10
1453
67
70
59
62
10
2065
52
55
62
81
8
2426
68
90
55
All five stroke information packets included a ‘‘risk factor quiz’’ containing questions intended to help the reader self-assess risk for stroke, and an identical table of stroke warning signs (using the wording approved by the Brain Attack Coalition) with instructions to call 911 immediately if any signs occurred.
K.M. Mazor, S. Billings-Gagliardi / Patient Education and Counseling 51 (2003) 207–215
The items covered knowledge about risk factors, causal mechanisms, warning signs and response to stroke symptoms. All five stroke conditions contained equivalent information with respect to the test items, with one exception (condition 2—short), where for two items information was implied but not explicitly stated in the reading. The test included both open-ended and multiple choice questions. Subtest scores were calculated separately for each of these areas as follows. Risk factors: 22 multiple choice items, worth 1 point each; causal mechanisms (stroke pathophysiology): 7 multiple choice items worth 1 point each; warning signs: 1 open-ended item, scored 2 ways; warning signs (all): 1 point per category for reference to each of the following categories of signs, for a maximum of 5 points—(a) severe or sudden headache; (b) visual problems; (c) any reference to weakness or numbness; (d) any reference to problems with speaking or understanding; and (e) any reference to problems with coordination, walking, balance or dizziness; warning signs (frequent) [25]: 1 point per category for each of the following, for a maximum of 7 points—(a) sudden onset; (b) one-sided symptoms; (c) weakness in arms or legs; (d) weakness in face; (e) numbness in arms or legs; (f) numbness in face; and (g) language difficulty or trouble speaking; response to stroke: 4 multiple choice items worth 1 point each and 2 open-ended items, worth 1 point each for a maximum of 6 points. Total score equals the sum of the following subscores: risk factors, causal mechanisms, warning signs (all) and response to stroke, with the maximum possible score equal to 40. All readings and test items were independently reviewed by two stroke experts. In part 2, participants also indicated their confidence in their ability to recognize the signs of stroke in themselves, using a five-point Likert-type scale (item wording: ‘‘How confident are you that you could recognize the signs of stroke in yourself?’’). 2.3. Procedure In part 1 of the study, each participant received one of the six possible information packets, assigned at random. Most packets were distributed in person; a small number were mailed to home addresses after the subject agreed to participate. Participants read the materials and completed the readings at their convenience, in a setting of their choosing. This was considered a realistic approximation of how non-patients are likely to review health information. Participants were instructed to read the packet and to answer the questions following the readings. Three rating scale items were included; one each on reading ease, understandability and usefulness of the materials (on a five-point Likert-type scale). Two open-ended items were included to solicit suggestions for improvements to the packets and participants’ perceptions of strengths of the packet. A small number of items were also included asking for age, ethnicity, gender, education and prior experience with stroke (wording for question on experience with
209
stroke: ‘‘What, if any, direct experience have you had with stroke, or with people who have had strokes? Please describe briefly.’’). Participants returned all materials from part 1 (including the informational packet) before receiving part 2, which contained the stroke knowledge test. Part 2 was mailed to respondents approximately 5 days after part 1 was received at the research office. Part 2 was the same for all participants, regardless of the reading they had received in part 1. 2.4. Analysis Because of the distribution of participants’ ratings of the materials, which were skewed towards the high end of the scale, ratings were re-coded to result in two categories (highest possible rating versus all other ratings) prior to analysis. A Chi-square test was used to evaluate differences between packets in respondents’ ratings of reading ease, understandability and usefulness. Bonferroni contrasts were constructed for planned pairwise comparisons between the control group mean and the mean for each of the five stroke information conditions (separately) on the stroke knowledge subscores and total score. We also compared the mean of all five stroke information conditions (combined) to the mean for the control condition. The chosen significance level (0.05) was corrected for the number of comparisons to be made (for each dependent variable separately) using the Bonferroni adjustment. This resulted in an adjusted significance level of 0.008. All contrasts were adjusted for age, education and experience with stroke. For the analysis, prior experience with stroke was coded dichotomously, with close experience defined as reporting of a first degree relative or close friend who had had a stroke. All mean differences were evaluated using one-tailed tests of significance (t-statistics) in order to test whether the means for the intervention groups were higher than the means for the control group. A power analysis was conducted, assuming sample sizes of 30 per group, a 0.01 significance level and a one-tailed test of the magnitude of the difference between two means. Results found 76% power for detecting large differences between means (an effect size of 0.8; this is Cohen’s d, a standardized mean difference, expressed in standard deviation units). Applying these results to the findings reported here, an effect size of 0.8 translates to a difference of approximately one point for the shorter subtests (causal mechanisms, all warnings signs and response); approximately two point differences on the longest subtest (risk) and approximately a three point difference overall (total score). While practical significance is more subjective than statistical significance, we believe that differences smaller than this may be interesting, but would have limited practical significance. The relationship between confidence in ability to recognize warning signs and knowledge of warning signs was assessed using the Pearson correlation. A one-tailed test of
210
K.M. Mazor, S. Billings-Gagliardi / Patient Education and Counseling 51 (2003) 207–215
significance was used, as we hypothesized that confidence would be positively related to knowledge. Because of the wide variation in the number of days between completion of parts 1 and 2, the correlation between interval length (in days) and total score was also computed. Again, a one-tailed test of significance was used, as it was hypothesized that a greater delay would be associated with lower scores. For all statistical tests, a P-value of 0.05 was considered significant.
3. Results The 177 lay people in this study described themselves as follows: 58% female; 41% under age 40 years; 30% aged 40–49 years; 29% aged 50 years; 11% indicated a high school degree or less as the highest level of education, 24% reported some college and 63% indicated they were college graduates; 96% reported their ethnicity as White; 2% as Black and 1% as Hispanic and 1% as Asian; 18% reported having had close experience with stroke, 36% indicated some experience with stroke and 47% indicated no experience with stroke. Chi-square tests conducted to determine whether condition (packet type) was independent of each of the above conditions (re-coded to dichotomous categories due to the small numbers per condition) found that randomization was successful with respect to these variables. The elapsed time between completing part 1 (reading and rating the informational materials) and completing part 2 (the stroke knowledge test) ranged from 7 to 58 days; the mean number of days elapsed was 18.4; the median number of days was 16 and the modal number of days was 14. The correlation between total stroke knowledge and number of days elapsed between reading the materials and completing the stroke knowledge test (excluding those in the control condition) was not significantly different from zero (r ¼ 0:06, P ¼ 0:24, N ¼ 143). Participants’ ratings of the six packets of written materials are summarized in Table 1. No differences between the
packets were found in terms of ratings of readability or usefulness. However, a statistically significant difference was found on understandability (w2 ¼ 11:6, P ¼ 0:04), with the fictional materials the most widely understood. Means and standard deviations for the various subscores and total score on the stroke knowledge test by condition are presented in Table 2. The planned pairwise comparisons of the control group mean to the mean for each of the stroke information conditions individually revealed only two significant differences, both on the subtest of knowledge of stroke pathophysiology. On this subtest, the means for participants in the causal condition and in the long/detailed condition stroke were each significantly higher than the mean for participants in the control condition. No statistically significant between-group differences were found for scores on risk factors, appropriate response to stroke, warning signs or total score. Comparisons of the combined intervention group mean with the control group mean found no statistically significant differences on any of the subtests or on total score. One post hoc question of particular interest was whether participants in the fiction condition had better recall of the most frequent stroke warning signs (sudden onset of onesided weakness or numbness of arm, leg or side of face and trouble speaking), as these were the warning signs observed by the narrator in the fictional reading. Therefore, the mean for the fiction participants was compared to the mean for all other participants (control group and the four other stroke information conditions) using the Scheffe´ critical value, as is appropriate for post hoc comparisons made after review of the data. While the fiction condition mean on the frequent warning signs was higher than the mean for all other groups combined (2.65 compared to 1.77) this difference did not achieve statistical significance. Positive correlations between knowledge of stroke warning signs and respondents’ self-assessed confidence in their ability to recognize stroke warning signs were found. For the score based on all warning signs: r ¼ 0:29, P < 0:01; for the score based on the most frequent warning signs: r ¼ 0:37, P < 0:01.
Table 2 Stroke knowledge means and standard deviations by condition Condition (maximum possible points) Control (N ¼ 31) Short (N ¼ 32) Causal (N ¼ 27) Causal þ analogy (N ¼ 27) Long/detailed (N ¼ 29) Fiction (N ¼ 31) Five stroke conditions combined (N ¼ 146) Total (N ¼ 177)
Risk factors (22) 16.1 16.4 17.0 16.6 16.9 17.2 16.8
(2.97) (2.21) (2.50) (2.50) (2.31) (2.83) (2.47)
16.7 (2.57)
Causal mechanisms (7) 5.39 5.88 6.19 5.74 6.17 5.16 5.82
(1.56) (1.04) (0.92) (1.13) (0.80) (1.29) (1.11)
5.74 (1.21)
Warning signs All (5)
Frequent (7)
2.74 2.72 2.41 2.78 2.86 2.61 2.68
2.03 1.72 1.56 1.74 1.79 2.65 1.90
(1.21) (1.25) (1.01) (1.15) (1.38) (1.11) (1.19)
2.69 (1.19)
Mean values in italics are significantly higher than the control group mean (in bold) for that subtest.
(1.82) (1.17) (0.80) (1.06) (1.68) (1.68) (1.38)
1.93 (1.46)
Response (6)
Total (40)
4.87 5.03 5.11 5.15 5.31 5.16 5.15
29.10 30.06 30.70 30.22 31.28 30.13 30.47
(1.26) (0.97) (1.09) (0.82) (0.71) (0.73) (0.87)
5.10 (0.95)
(5.20) (3.68) (3.00) (3.99) (3.48) (3.95) (3.63)
30.23 (3.96)
K.M. Mazor, S. Billings-Gagliardi / Patient Education and Counseling 51 (2003) 207–215
4. Discussion The findings of this study suggest that at least for the print materials developed and tested here, participants’ ratings did not discriminate between the materials in terms of reading ease or usefulness, in spite of substantial differences between packets in terms of length, readability indices, informational content, and style. Participants’ ratings of understandability did show differences across conditions, with the fiction condition rated most highly. These results are consistent with recommendations in the literature that readability indices not be the sole criterion for determining the appropriateness or quality of print materials [26]. The stroke information packets studied here had minimal or no impact on stroke knowledge measured 1 weeks postintervention, even though materials varied in length, amount of information, level of detail, use of analogies and use of the narrative voice. This suggests that print materials of the sort used here may not be an effective means of increasing stroke knowledge in the general public, at least not without supplemental instruction or repeated exposure. The circumstances of this study provided relatively favorable conditions for a test of such materials. As a group, participants were more highly educated than the public at large (88% reported some college education) and therefore the readability of the materials studied was well within the comfortable reading range of virtually all participants. Further, it can be assumed that most of these participants were accustomed to using print materials in their daily lives. In fact, ratings and comments confirm a favorable response to the materials. The fact that all participants answered all three of the questions for the readings, and many made extensive and apparently well-thought out comments, suggest that participants actually read the materials, in many cases quite carefully. Thus, if this group of lay people did not recall the information presented, it is possible that the impact of print materials on less motivated, less educated people could be even less. However, it is also possible that less educated lay people might discover more new information in these readings and thus might well show greater increases in knowledge than the participants in this sample showed. Unfortunately, we are not able to determine which effect of educational level is more likely. One possible reason for the lack of a stronger effect of the print materials used here on knowledge is the relatively long interval (18 days on average, 7 days minimum) between reading the materials and completing the test. Including such an interval between the intervention and measurement was intentional, for if stroke knowledge is not retained it is unlikely to be useful. However, the fact that we did not assess participants’ retention of the information immediately after reading the materials is a limitation of the study, as we are unable to evaluate whether learning did occur initially, but was not maintained. A second limitation of the study is that a number of the multiple choice test items were relatively easy for this
211
sample and thus the sensitivity of the test to improvements in knowledge (as measured by these items) may have been limited. The average proportion correct across all multiple choice items combined was 0.79. However, while the multiple choice items were relatively ‘‘easy’’, responses to the open-ended item on recall of warning signs showed room for improvement, even in this sample. For instance, only 7% overall were able to name at least one stroke warning sign from each of the five major categories. With respect to response to stroke symptoms, only 70% indicated they would call 911 if someone is having a stroke. As is the case whenever multiple choice items are used, guessing is likely to be a factor and to have the effect of reducing the difficulty of the multiple choice items. In contrast, on openended, free response items like the item used here to assess knowledge of warning signs, guessing is likely to have less of an impact; for a response to be correct, one must generate the correct response rather than simply recognizing the correct response from a list. It is not possible to determine whether the content of the items (i.e. warning signs versus pathophysiology) or the format (multiple choice versus free response/open-ended) was responsible for the fact that the percentage correct was relatively high for the multiple choice-based subtests. A longer test could provide a partial solution to these issues and future research efforts in this area would do well to include additional item development efforts. The results reported here are likely to be generalisable to comparable populations, specifically, relatively well-educated, relatively young (under age 50 years) Whites. However, the conclusions drawn from our results may not be generalisable to other populations. In addition, our small sample size makes it impossible to assess whether stroke knowledge overall (in the absence of any intervention) is associated with educational achievement, ethnicity or age. This study did not address whether the print materials used here would have had greater impact on stroke knowledge had they been used in conjunction with other interventions, such as counseling or consultation with providers. In addition, the current study did not address whether illustrations could facilitate comprehension and retention of information, a possibility that was suggested by study participants in their comments on the materials. Further research in this area is needed. The results of the post hoc analyses suggest potentially fruitful directions for future research. Among the most intriguing findings is that respondents in the fiction condition seemed to recall the warning signs portrayed by the fictional patient more frequently than did participants in the other groups. While this difference did not achieve statistical significance when evaluated using Scheffe´ contrasts, there was a difference of almost one point between the fiction condition mean and the mean for all other conditions, a result that we find suggestive. The fiction condition contained an emotional element lacking in the other stroke information conditions. The description of the stroke victim
212
K.M. Mazor, S. Billings-Gagliardi / Patient Education and Counseling 51 (2003) 207–215
may have facilitated visualization of some signs and consequences of stroke. Any or all of these factors may have facilitated recall. The design and power of the current study may have limited our ability to investigate the impact of fiction as a means of communicating about stroke, but our findings suggest this is area worthy of further investigation. If further research confirms the positive impact of narrative accounts on stroke knowledge, this would have important implications for development of educational materials. 4.1. Practice implications Clinicians and public health educators should be aware that provision of print materials alone, without supplemental instruction, counseling or follow up, may not be an effective means of communicating health information. Whether it is
possible to develop print materials that lead to better learning and recall of key information is not clear. However, additional research on this topic, especially with respect to the use of fiction, appears warranted.
Acknowledgements This work was supported in part by a Joseph P. Healey grant. We thank Nancy M. Fontneau, MD and George Hademenos, PhD, for helpful comments on the stroke information packets and test items used in the study, Hariharan Swaminathan, PhD, for advice on statistical analyses and Laura Sefton for administrative assistance. We also thank the editor and two anonymous reviewers for their thoughtful comments and suggestions.
Appendix A. Excerpts from print materials Condition
Excerpt
Control
What is colon cancer? The colon is the last part of the long muscular tube in which food is digested. After digestion is completed in the colon, the waste matter that remains goes into the rectum and then passes out of the body during a bowel movement as the stool (feces). Colon cancer occurs when cells that make up the wall of the colon begin to grow out of control. It often starts as small non-cancerous tumors called polyps that have thin stalks attached to the inner lining of the colon and grow into the center of the hollow digestive tube. One type of polyp has a tendency to become cancerous. How might I be alerted that I could have colon cancer? These are some of the symptoms that patients with colon cancer may experience. However, the early stages of colon cancer often produce no symptoms. Six common symptoms that may suggest colon cancer. A change in bowel habits such as diarrhea, constipation, or narrowing of the stool that lasts for more than a few days. A feeling that you need to have a bowel movement that is not relieved by doing so. Rectal bleeding or blood in the stool. Cramping or steady pain in the area of the stomach or ‘‘gut’’. Decreased appetite, or weakness and fatigue, with no known cause. Jaundice (a yellow green discoloration that is visible in the skin or the white of the eye).
Short
What is a stroke? Strokes are injuries to the brain produced by problems involving its blood supply. There are two kinds of strokes: ischemic strokes in which part of the brain suddenly does not get enough blood, and hemorrhagic strokes in which there is sudden bleeding into or around the brain. After a stroke, survivors are often left with life-long neurologic impairments that can range from mild to severe.
Causal
Ischemic strokes occur when a brain artery is suddenly blocked. Blockage is often caused by a blood clot that plugs up the artery, or by accumulations of fatty material in the wall of the artery (the medical term for this is atherosclerosis). When little or no blood flows to some part of the brain, that region becomes ischemic. Parts of the brain that are ischemic stop working correctly. This usually causes the patient to develop a neurologic problem—for instance, sudden weakness of one arm. The kind of problem depends on the specific part of the brain that is affected. If the blockage of the artery is temporary, the brain will usually work normally again once blood flow returns. If blood flow is cut off for too long, the affected part of the brain will die. When this happens, the patient’s neurologic problems become permanent, because the body cannot re-grow parts of the brain that have died. This is why strokes produce life-long rather than just temporary disability, and why different patients who have had strokes have different kinds of problems.
K.M. Mazor, S. Billings-Gagliardi / Patient Education and Counseling 51 (2003) 207–215
213
Appendix A. (Continued ) Condition
Excerpt Hemorrhagic strokes occur when a brain artery suddenly bursts. When blood squirts into the brain or around the brain, this injures the brain by tearing or squeezing it. The injured parts of the brain stop functioning and may die, which gives the patient permanent problems.
Causal þ analogy
Ischemic strokes occur when a brain artery is suddenly blocked. Blockage is usually caused by a blood clot that plugs up the artery, or by accumulations of fatty material in its wall (the medical term for this is atherosclerosis). You can imagine what happens during an ischemic stroke by making this simple comparison. If some ‘junk’ in the water or a build-up of mineral deposits suddenly blocked the water pipe that feeds your kitchen, no water would flow to the dishwasher or disposal. These fixtures might have worked fine last night, but now nothing happens when you turn them on, because suddenly there is no water getting to them. Similarly, if a clot suddenly blocks blood flow to one region of the brain, that part will immediately stop working. This usually causes the patient to develop an obvious problem, like sudden weakness of an arm or leg. The kind of problem depends on the specific part of the brain that has its blood cut off (that is, has become ischemic). If the blockage is temporary, the brain will usually work normally again once blood flow returns. If blood flow is cut off for too long, the affected part of the brain will die. When this happens, the patient’s neurologic problems become permanent, because the body cannot re-grow parts of the brain that have died. This is why strokes produce life-long rather than just temporary disability, and why different patients who have had strokes have different kinds of problems. Hemorrhagic strokes occur when a brain artery suddenly busts. Brain arteries are like fire hoses in that both carry a lot of liquid at high pressure. If a hose bursts when firemen are putting out a house fire, water will squirt everywhere uncontrollably, breaking-up furniture, tearing the drapes, and even making holes in the walls. When a brain artery bursts the same thing happens, only in this case it is the brain that is being torn or squeezed. Injured parts of the brain stop functioning and may die, which leaves the patient with permanent neurologic problems.
Long/detailed
Ischemic strokes account for 80% of all strokes. A little about the circulation of the brain. The brain requires a continuous supply of blood in order to work correctly. It receives blood from two pairs of large blood vessels, the carotid and vertebral arteries, that run up to the brain through the side and back of the neck, and then branch to form the smaller vessels that go to different parts of the brain. Normal function of the brain depends on an almost continuous blood flow through all these vessels. This is the way that the brain receives oxygen and nutrients, and gets rid of its wastes. If an artery is blocked, then blood cannot reach a particular part of the brain and the affected part is unable to do its job properly. Each part of the brain carries out specific functions, so when a specific area of the brain is deprived of blood, the affected person may find that she/he cannot perform a certain task. For instance, an area on the left side of the brain is responsible for moving the right arm and hand. If this brain area suddenly loses blood flow (a doctor would say it ‘‘becomes ischemic’’) then the person would notice that suddenly her/his right arm and hand became weak so that she/he could not hold onto things. Two major ways arteries can become blocked: (1) atherosclerosis; and (2) blood clots. (1) Atherosclerosis is an accumulation of fatty materials inside the wall of an artery. It can form a thickening that extends into the hollow central part of the artery, narrowing the vessel and restricting blood flow through it. (2) Blood clots are usually helpful because stop bleeding when we cut ourselves. However, if a blood clot forms inside the heart or an artery it can cause major problems for the brain. Here’s how. After a heart attack in which the heart wall has been damaged, or in abnormal situations where the heart does not contract normally, a clot can form inside the heart. If a piece of the clot breaks loose from the heart, it can be carried in the blood to the brain. When that piece of clot gets into a brain artery that is too narrow to let it pass, it will get stuck and slow blood flow by acting like a plug. As a result, some part of the brain is deprived of blood, and it becomes ischemic. Other places that blood clots form are on the inside an artery whose wall is damaged by advanced atherosclerosis. This commonly occurs inside the carotid artery where it runs through the neck. If a piece of clot breaks off from there, it will travel directly into the brain and can plug up a brain artery in the same way as a clot coming from the heart.
214
K.M. Mazor, S. Billings-Gagliardi / Patient Education and Counseling 51 (2003) 207–215
Appendix A. (Continued ) Condition
Excerpt If the lack of blood flow is transient (lasting just a few minutes), the brain will usually work normally again once its blood flow returns. However, if blood flow is cut off for longer, it is likely that that affected parts of the brain will die. When this happens, we say that the person has had a stroke. Because the body has no way to make new brain tissue to replace the parts that have died, the injury to the brain produced by a stroke is permanent. Hemorrhagic strokes account for about 20% of all strokes. Hemorrhagic strokes occur when a blood vessel in the brain suddenly bursts. When blood squirts out into the brain or into the tissue layers that surround the brain, it can injure the brain by compressing and tearing it. Injured parts of the brain stop functioning and may die, which leaves the patient with permanent neurologic problems.
Fiction
‘‘Mrs. Hewitt?’’ she said. ‘‘Right this way.’’ She lead us into an examination room, and not 2 min later one of the emergency room doctors came in and examined Bill. He asked me some questions, then he confirmed what I had thought—Bill was having a stroke. ‘‘You were absolutely right to bring him in right away. We’ll do some tests, so we know what kind of stroke it is, and then we’ll do what we can to prevent or at least minimize the damage.’’ They took Bill away. I filled out forms until it seemed like there was nothing more they could possibly need to know, and then I waited. And pictured what was going on in Bill’s brain. The odds were that he was having an ischemic stroke. Ischemic strokes are by far the most common kind of stroke. Also, since Bill had had a heart attack 4 years earlier, we both knew he was at greater risk for having a stroke, and especially for having an ischemic stroke. This is because both are caused by blocked blood vessels. In a heart attack, the blockage prevents blood from getting to part of the heart. In a stroke, the blockage prevents blood from getting to part of the brain. Of course it was still possible that Bill’s stroke was due to a ruptured vessel that was bleeding into his brain. This is called a hemorrhagic stroke. The problem was that until the doctors knew which kind of stroke Bill was having, they would not know how to treat it.
All five stroke conditions also contained two additional sections: (1) a list of stroke warning signs with instructions to call 911; and (2) a self-quiz, with questions for assessing personal risk factors and brief advice on risk reduction. In the fiction condition the narrator introduced these two sections by saying, ‘‘And so when I send out holiday cards this year, I’m enclosing the following information on stroke warning signs and a copy of a stroke risk quiz. People may think it’s a little odd, but I don’t care if there’s a chance I can help even one person avoid having a stroke or being disabled by one.’’
References [1] Goldstein LB, Gradison M. Stroke-related knowledge among patients with access to medical care in the stroke belt. J Stroke Cerebrovasc Dis 1999;8(5):349–52. [2] Hux K, Rogers T, Mongar K. Common perceptions about strokes. J Community Health 2000;25:47–65. [3] Kothari R, Sauerbeck L, Jauch E, et al. Patients awareness of stroke signs, symptoms, and risk factors. Stroke 1997;28:1871–5. [4] Morgenstern LB, Steffen-Batey L, Smith MA, Moye LA. Barriers to acute stroke therapy and stroke prevention in Mexican Americans. Stroke 2001;32:1360–4. [5] Pancioli AM, Broderick J, Kothari R, et al. Public perception of stroke warning signs and knowledge of potential risk factors. JAMA 1998;279:1288–92. [6] Samsa GP, Cohen SJ, Goldstein LB, Bonito AJ, Duncan PW, Enarson C, et al. Knowledge of risk among patients at increased risk for stroke. Stroke 1997;28:916–21. [7] Schroeder EB, Rosamond WD, Morris DL, Evenson KR, Hinn AR. Determinants of use of emergency medical services in a population with stroke symptoms: the Second Delay in Accessing Stroke Healthcare (DASH II) Study. Stroke 2000;31:2591–6.
[8] Williams JE, Rosamond WD, Morris DL. Stroke symptom attribution and time to emergency department arrival: the delay in accessing stroke healthcare study. Acad Emerg Med 2000;7:93–6. [9] Goldstein LB, Bian J, Samsa GP, Bonito AJ, Lux LJ, Matchar DB. New transient ischemic attack and stroke: outpatient management by primary care physicians. Arch Intern Med 2000;160:2941–6. [10] Spilker J. The importance of patient and public education in acute stroke. In: Proceedings of a National Symposium on Rapid Identification and Treatment of Acute Stroke, August 1997. The National Institute of Neurological Disorders and Stroke (NINDS), National Institutes of Health. Available at www.ninds.nih.gov (NINDS). [11] Lacy CR, Suh DC, Bueno M, Kostis JB. Delay in presentation and evaluation for acute stroke: Stroke Time Registry for Outcomes Knowledge and Epidemiology (S.T.R.O.K.E.). Stroke 2001;32:63–9. [12] Williams L, Bruno A, Rouch D, Marriott D. Stroke patients’ knowledge of stroke: influence on time to presentation. Stroke 1997; 28:912–5. [13] Arthur VA. Written patient information: a review of the literature. J Adv Nurs 1995;21:1081–6. [14] Frost MH, Thompson R, Thiemann KB. Importance of format and design in print patient information. Cancer Pract 1999;7:22–7.
K.M. Mazor, S. Billings-Gagliardi / Patient Education and Counseling 51 (2003) 207–215 [15] Berner E, Partridge E, Baum S. The effects of the PDQ patient information file (PIF) on patients’ knowledge, enrollment in clinical trials and satisfaction. J Cancer Educ 1997;72:121–5. [16] Barlow JH, Wright CC. Knowledge in patients with rheumatoid arthritis: a longer term follow-up of a randomized controlled study of patient education leaflets. Br J Rheumatol 1998;37:373–6. [17] Burton AK, Waddell G, Tillotson KM, Summerton N. Information and advice to patients with back pain can have a positive effect. A randomized controlled trial of a novel educational booklet in primary care. Spine 1999;24:2484–91. [18] Higgins L, Ambrose P. The effect of adjunct questions on older adults’ recall of information from a patient education booklet. Patient Educ Couns 1995;25:67–74. [19] Webber D, Higgins L, Baker V. Enhancing recall of information from a patient education booklet: a trial using cardiomyopathy patients. Patient Educ Couns 2001;44:263–70.
215
[20] O’Loughlin J, Paradis G, Meshefedjian G. Evaluation of two strategies for heart health promotion by direct mail in a low-income urban community. Prev Med 1997;26:745–53. [21] Davis D. ‘‘Understanding AIDS’’—the national AIDS mailer. Public Health Rep 1991;106(6):656–62. [22] Kirby D, Harvey PD, Claussenius D, Novar M. A direct mailing to teenage males about condom use: its impact on knowledge, attitudes and sexual behavior. Fam Plann Perspect 1989;21:12–8. [23] Flesch R. A new readability yardstick. J Appl Psychol 1948;32:221–33. [24] McLaughlin GH. SMOG grading—a new readability formula. J Reading 1969;12:639–46. [25] Bogousslavsky J, Melle GV, Regli F. The Lausanne stroke registry: analysis of 1000 consecutive patients with first stroke. Stroke 1988;19:1083–92. [26] Meade CD, Smith CF. Readability formulas: cautions and criteria. Patient Educ Couns 1991;17:153–8.