- Email: [email protected]
Suitability of prostate cancer education materials: applying a standardized assessment tool to currently available materials
Patient Education and Counseling 55 (2004) 275–280
Suitability of prostate cancer education materials: applying a standardized assessment tool to currently available materials Debra Weintraub a , Sally L. Maliski a,∗ , Arlene Fink a,b , Sarah Choe a , Mark S. Litwin a,b a
Department of Urology, David Geffen School of Medicine, Jonsson Comprehensive Cancer Center, University of California, Box 951738, Los Angeles, CA 90095-1738, USA b Department of Health Services, School of Public Health, University of California, Los Angeles, CA 90095-1738, USA Received 25 April 2003; received in revised form 10 October 2003; accepted 23 October 2003
Abstract Written educational materials serve as important teaching instruments for prostate cancer patients and their families. However, they must be understandable for their intended audiences. We examined prostate cancer brochures and pamphlets using the Suitability Assessment of Materials (SAM) instrument for the materials’ overall suitability, readability, and cultural appropriateness. These factors are crucial to ensure that patients are able to understand and relate to the information. Our evaluation of 29 materials demonstrated that the majority, 22 (75.8%), scored “adequate” for their overall suitability. However, 26 materials (90%) scored “not suitable” for their reading grade level, while 55% of the materials could not be rated on cultural appropriateness because of lack of cues about the intended audience. Also, many of the materials scored poorly on content, graphics, self-efficacy, and learning motivation and stimulation. Most of the materials did well with typography and layout. Overall, the findings point to the need to carefully assess written materials used for multicultural audiences with low reading ability. © 2003 Published by Elsevier Ireland Ltd. Keywords: Prostate cancer; Patient education; Readability
1. Introduction Readable and suitable patient education materials can be effective teaching aids for adult learners [1]. However, most health education materials are produced with inadequate attention to their suitability for the intended audience [2]. Furthermore, it is estimated the 23 million Americans do not understand information given to them by health professionals [3], and people at all literacy levels prefer simple written materials over complex materials [4,5]. This is especially true during times of stress such as having received a cancer diagnosis. Additionally, people are empowered to learn and retain the information better if it is culturally appropriate [6], encourages positive behaviors as achievable, and models behaviors and skills [7]. Thus, patient education information is inaccessible to individuals who cannot read well, understand, or relate to the material presented. Because prostate cancer is the most common noncutaneous cancer among American men [8], it is essential ∗ Corresponding author. Tel.: +1-310-794-4084; fax: +1-310-267-2623. E-mail address: [email protected] (S.L. Maliski).
0738-3991/$ – see front matter © 2003 Published by Elsevier Ireland Ltd. doi:10.1016/j.pec.2003.10.003
to have available, prostate cancer patient education materials that are understandable and appropriate. While prostate cancer is most common among African Americans it also adversely affects Latino, Asian, Pacific Islander, and Caucasian men [8] many of whom carry the burden of low literacy and being underserved. The need for understandable materials is especially critical for men diagnosed with early stage prostate cancer, because they are faced with the challenge of choosing among several treatments. These men need to be well-informed in order to participate knowledgeably and confidently in the treatment decision-making process. Men at later stages of the disease need to understand their treatments and how to manage symptoms and side effects. Therefore, materials used to help men with prostate cancer need to be evaluated for their ability to present crucial information in an understandable and meaningful way. Thus, the purpose of this study was to evaluate readily available, written prostate cancer patient education materials for reading level, cultural appropriateness, learning stimulation and motivation, content presentation, and graphics, typography and layout.
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2. Methods 2.1. Collection of materials Printed prostate cancer materials were acquired through a national telephone and email solicitation for English-language materials in December 2001. In addition to requesting materials from nationally recognized organizations such as the American Cancer Society, National Cancer Institute, and American Foundation of Urologic Disease, we located materials through cancer resource guides and by conducting Internet searches with the terms prostate and prostate cancer. We applied the following inclusion criteria to the materials received: Materials had to be prostate cancer specific and written in English. 2.2. Assessment of patient education material The Suitability Assessment of Materials (SAM) instrument was used to evaluate prostate cancer patient education materials. Doak et al. developed the SAM instrument to score patient education materials on different factors, including readability, cultural appropriateness, and how well they enhance the reader’s self-efficacy [2]. The SAM gives researchers a convenient, standardized method for evaluating patient education materials. The SAM was tested and validated with individuals from a variety of cultural backgrounds [2]. It can be used when developing new materials [4] or to evaluate existing materials that span a variety of health issues. The SAM instrument can be found in the 1996 publication, Teaching Patients with Low Literacy Skills, by Doak et al. [2]. Overall suitability of a piece of patient education material generally relates to the total SAM score (Table 1). This score is obtained by adding the rating of each of the SAM’s 22 factors, grouped into six categories (content, literacy demand, graphics, layout and typography, learning stimulation and motivation, and cultural appropriateness) [2]. A percentage is calculated by dividing the sum of the ratings by the total possible score. Because not all factors are applicable to all materials, the total possible score can vary among materials. The percent scores are then grouped into ratings as follows: 0–39%, inadequate; 40–69%, adequate; and 70–100%, superior [2]. Content is evaluated based on whether the purpose is evident, the material is behavior-focused, the scope is limited to the purpose, and a summary is included. Literacy demand refers not only to the reading grade level, but also to use of active voice, vocabulary, position of context, and use of learning aids such as headers or topic captions. Reading level is determined by the Fry formula. The Fry formula is a commonly used calculation method that is valid between the 1st and the 17th (college plus 1 year of graduate school) grade levels [1]. It uses average numbers of sentences and syllables in 100-word passages to determine the reading level. We also applied the Flesch-Kincaid formula to determine
whether the writing style was in the active or passive voice [9]. Graphics are rated on whether they show the purpose, are recognizable or familiar, are relevant to the key message, are used to explain figures, and have captions. Layout evaluation considers position of illustrations, sequence of information, visual cueing, use of white space, use of color, line length, contrast between type and paper, and use of low-gloss paper. Typography is evaluated for text type, type size, use of typographic cues and use of capitalization. Also, considered under layout and typography is the use of subheads. Learning stimulation and motivation considers whether the material includes interaction, models specific behaviors or skills, and motivates through enhancing self-efficacy. We evaluated self-efficacy based on whether the material presented information with positive encouragement and broke complex concepts down into understandable sections. The assessment of cultural appropriateness includes match in logic, language and experience to the intended culture and the use of positive cultural images and examples. We assessed cultural appropriateness by first determining the target audience for each material based on the ethnicity of people portrayed the material’s pictures, illustrations, or name references that might indicate the ethnicity of the intended audience. If no cues were provided, we were not able to score cultural appropriateness for the intended audience. Therefore, cultural appropriateness was considered not applicable and was not included in the total SAM score calculations for these materials. When cues were present, we evaluated the cultural appropriateness items based on the illustrations, images, and examples [10,11]. Initially, we applied the SAM to six materials independently and then met to discuss discrepancies in interpretation of items. From this discussion we developed guides to consistently interpret and apply the SAM items. We applied the SAM to each patient education material, including the six test materials, to obtain suitability scores independently. Following published criteria, points were assigned to materials for each SAM category. The percentage of the total possible points yielded suitability ratings. The three investigators who evaluated the materials have a range of expertise in prostate cancer and patient education. One is completing graduate work in health education (DW). A second is an evaluation specialist (SC), and the third is an oncology nurse researcher specializing in prostate cancer (SLM), We met to review any discrepancies and negotiate 100% concordance in our ratings. Additionally, we consulted by email and teleconference with Leonard and Cecilia Doak, the SAM’s authors, to ensure proper application of the SAM and verify the accuracy of our scoring approach.
3. Results Of the 108 materials requested, 92 patient education materials were received. All were free of charge. Of these 92
Table 1 Overall suitability and readability of prostate cancer patient education materials based on the Suitability Assessment of Materials (SAM) instrument Education material title
Readable at 5th grade level
Culturally suitable
Overall SAM scorea (%)
American Cancer Society
After Diagnosis: Prostate Cancer: Understanding Your Treatment Options Managing Incontinence After Treatment for Prostate Cancer For Men Only: What You Should Know About Prostate Cancer Facts on Prostate Cancer Guidelines for the Early Detection of Prostate Cancer Man to Man News: Prostate Cancer News and Info from ACS’ Man to Man Program
Nob Nob No No No No
No Yes No cues No cues No cues Yes
66 67 66 47 63 58
American Cancer Society and Cancer Research Institute American Cancer Society and National Comprehensive Cancer Network American Foundation for Urologic Disease Astra Zeneca
What to do if Prostate Cancer Strikes
No
No cues
61
Prostate Cancer Treatment Guidelines for Patients
No
Yes
61
Resource Guide Choices for Prostate Cancer Choices for Personal Survival Prostate Cancer Staging and Grade Pattern Prostate Cancer: What it is and How it is Treated Early Detection Zoladex Goserelin Acetate Implant: Therapy for the Treatment of Prostate Cancer
No No No No No
No No No No No
cues cues cues cues cues
75 39 87 66 69
Nutrition and Prostate Cancer Prostate Cancer and Cryocare: Our Decision Guide The Complications Men Fear Most Know Your Options: A Prostate Cancer Education Program: Understanding Treatment Choices for Prostate Cancer Prostate Surgery and Its Potential Impact on Male Sexual Health What You Should Know About Prostate Cancer For Women Who Care: Info on Prostate Disease to Share with the Men in Your Life
No No No No
No cues No cues Yes Yes
50 55 68 74
No No No
No cues Yes Yes
69 43 80
Important Information About Prostate-Specific Antigen (PSA)
No
Yes
75
Keep Your Health Up To Par
No
Yes
59
Lifelines: A Guide to Life with Prostate Cancer Understanding Prostate Disease: A Guide to Treatment and Support Hormonal Therapy for Prostate Cancer Learning About Prostate Cancer Treatment Options
Nob
Yes Yes No cues
66 62 66 57
Detection of Prostate Cancer Two Against One: A Spouse’s Guide to Coping with Prostate Cancer Prostate Cancer Questions and Answers
No No No
No cues Yes No cues
67 73 47
CaP Cure Endocare In Touch National Cancer Institute Pfizer Prostate Cancer Research Institute Prostate Health Council Prostate Health Council c/o American Foundation for Urologic Disease TAP Pharmaceuticals, Inc.
UroCor Inc. and the Urology Company US Too! US Too! and National Cancer Institute a b
No No No
D. Weintraub et al. / Patient Education and Counseling 55 (2004) 275–280
Source
Suitability (overall suitability score) using the SAM: 70–100%, superior; 40–69%, adequate; 0–39%, not suitable—not applicable items were not figured into the scores. 6th–8th grade reading level.
277
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materials, 45 were not prostate cancer specific and 18 were not in English, leaving 29 pamphlets and brochures for evaluation. The prostate cancer written educational materials fell into the following categories: 8 brochures, 10 booklets, 7 books, 1 flyer, and 3 fact sheets. The main topics included general prostate cancer education (n = 10), screening (n = 4), treatment options (n = 7), and other issues such as diagnosis, side effects, and diet/nutrition (n = 8). Thirteen of the materials included illustrations of Caucasian people (n = 6) or people of various ethnicities (n = 7). The mean overall SAM score for all the materials was “adequate” at 63.3%. Of the 29 materials, SAM suitability scores were superior in 6 (20.6%), adequate in 22 (75.8%), and not suitable in 1 (3.4%). Content: Most of the materials stated their purpose in the title. However, very few of the materials rated “superior” in presenting content in a tangible, behavior-related context. That is, the content of the material mainly included facts about prostate cancer, not guides for patient behavior or decision-making. Additionally, 25 of 29 or 86% of the materials did not include a summary or review at the end, making them “not suitable”. Literacy demand: Overall, the materials scored poorly on readability with 26 (90%) of the materials scoring “not suitable” and 3 (10%) scoring “adequate”. The grade levels of the materials ranged from 7th grade to 17th grade. In examining whether the writing relied on commonly used vocabulary, only 4 (14%) scored “superior”. One material indicated its reading grade level on the inside cover. Graphics: In evaluating the cover graphic for each piece of material, we found that the majority rated “superior”. However, the use of illustrations within materials varied in suitability. The majority of graphics that showed the detailed male reproductive system did not locate it within the body for readers. In examining the lists and tables, we found that 76% of the materials did not include captions that detailed information included in the lists and tables. Layout and typography: The layout of most of the materials received high scores. The materials were mostly adequate and superior for the typography variables. One area that consistently led to lower ratings was the tendency to include too much information under subheadings. Learning stimulation and motivation: None of the materials provided interactive learning stimulation. In evaluating content for behavior modeling, 58.6% of the materials scored “adequate”. Evaluating the materials for motivation and self-efficacy revealed that 72.3% of the materials were “adequate” or “not suitable”. Cultural appropriateness: The brochures and pamphlets included 6 with Caucasians as the intended audience, 7 intended for a multi-ethnic audience, and 16 that provided no cues as to the ethnicity of their intended audience. Of the materials that could be rated for cultural appropriateness, we found that only 5 of the materials rated “superior”. We further examined cultural appropriateness by looking for pos-
itive, negative, or neutral representations of the target audience. Only 7 (24%) rated “superior” for using positive images and examples. Because there were no target audiences specified, 55% of the materials were rated “not applicable”. Therefore, they received no cultural appropriateness score and the cultural appropriateness items did not enter into the calculation of the total SAM score.
4. Discussion We were particularly interested in examining four qualities of the prostate cancer health information materials: overall suitability, readability, cultural appropriateness, and facilitation of self-efficacy. The materials we evaluated were adequate or superior in overall suitability. However, many materials scored poorly in readability, cultural appropriateness, and self-efficacy diminishing their value for low-literacy, multicultural audiences. This highlights the necessity for health professionals to carefully evaluate patient education materials that are being used to assist patients to understand their treatment options for decision-making and information needed for self-care, especially for those who might have limited reading ability or are from various cultural backgrounds. That 90% of the materials rated “not suitable” for their readability clearly demonstrates that reading level of materials was much too high, especially for low-literate audiences. The average reading level of Americans is approximately 6th–8th grade, and one in five have serious literacy limitations [2,12]. Among Americans 65 years or older who are members of inner-city minority groups, 40% read below the 5th grade reading level [2]. This lack of basic literacy skills can interfere with a patient’s ability to learn. Many who are indigent, elderly, or are from a minority group do not have the literacy skills necessary to function successfully within today’s healthcare system. Healthcare providers use educational materials to inform their patients, but many do not benefit from these materials because they cannot read or comprehend them [13]; the needed information is inaccessible. Cultural appropriateness of patient education materials is enhanced when readers see illustrations and graphics that are easily recognizable and that show people similar to themselves and those around them [2,9]. Many factors that affect the healthcare, such as cultural health beliefs and practices, differ among various ethnicities [14]. Thus, it is important to consider these factors when designing patient education messages. For example, in demonstration projects for socioeconomically disadvantaged people, it has been fount that the likelihood that printed cancer education materials for African Americans will translate into positive behavior changes is increased if the messages are delivered in a culturally sensitive manner specific to African Americans using illustrations and pictures of African American people and symbols [10]. Guidry and Walker found, using
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their Cultural Sensitivity Assessment Tools, that available prostate cancer educational materials specifically targeted to African Americans had a mean score of only 40% for cultural appropriateness based on format, written message, and visual message [14]. Mohrmann et al. found that printed educational materials on breast cancer do not adequately provide information to undereducated, economically disadvantaged African American women based on reading level and scores on the Cultural Sensitivity Assessment Tools developed by Guidry and Walker [15]. Our findings are consistent with these results indicating that most materials targeted to or potentially used by members of ethnic groups or people of low-literacy are unsuitable for these populations. Applying the concept of self-efficacy is an effective means of promoting positive health behavior and informed decision-making [16]. Self-efficacy theory explains and predicts how people influence their own motivation and behavior, including health behavior [7,16]. According to self-efficacy theory, behavior is influenced by outcome expectancies and efficacy expectancies [16]. Outcome expectancy is the belief that a behavior can influence the outcome of a situation. Efficacy expectancies are beliefs about one’s ability to perform the influencing action. A man without health insurance may believe that the surgery would cure his prostate cancer (outcome expectancy), but his self-efficacy is low if he believes that he cannot have the surgery because he cannot pay for it (efficacy expectancy). Doak et al. found that many patients cannot understand the health information they are given and, therefore, cannot act in a self-efficacious manner [17]. In order to enhance self-efficacy, materials need to model the desired behavior using someone similar to the intended audience. Providing testimonials is one way of accomplishing this. Using questions that encourage the reader to apply the information to his own situation or providing a means to keep track of PSA levels and appointments can enhance self-efficacy. Also, providing information in small, manageablesections and positive encouragement are other means by which written patient education materials can enhance self-efficacy. Very few of the materials reviewed used these or similar methods to enhance the reader’s self-efficacy. Results need to be interpreted with caution. Because the sample was convenience-based and taken only from nationally recognized prostate cancer organizations, the results may not be generalizable to all prostate cancer educational materials, all cancer educational materials, or written health education materials as a whole. We intentionally limited written prostate cancer health education materials to those distributed by well-known organizations. Independent organizations and/or community-based clinics may have developed their own educational materials that are more readable, suitable, or culturally sensitive. We might have strengthened our evaluation of the cultural appropriateness of prostate cancer-specific brochures and pamphlets by consulting members of various ethnic groups.
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Also, there are some issues to be considered in the application of the SAM instrument. There is latitude allowed in the interpretation of the criteria. This can lead to subjectivity in the rating of materials. While we attempted to minimize this by having three evaluators rate materials independently and then negotiate to consensus, bias was probably not entirely eliminated. Also, the SAM is difficult to apply when there are few overt cues as to the intended cultural audience. Even when there are cues such as pictures and graphics, they are only unvalidated proxies. This highlights an issue with the scoring of the SAM. As seen primarily with the cultural sensitivity items, when an item is considered “not applicable”, it is eliminated from the calculation of the total possible SAM score. Therefore, the percentage scores are based on different denominators calling into to question the comparability of the scores. One way to address this would be to group materials with the same items scored together and then compare scores only within groups. 4.1. Practice implications For health professionals concerned with providing information to patients to assist them with their treatment decision-making and care, such as is critical for men with prostate cancer, it is essential that they be aware of the suitability of written materials that they are using for patients. Clinicians need to ensure that the materials are understandable and help patients apply the information to their own situation in a meaningful way. If appropriate written material is not available, health professionals may need to explore developing appropriate materials. At a minimum, they need to review the information in ways that are understandable to the patient, ascertain understanding, and not rely on written material alone, especially when reading ability and cultural context may not match that of the material. Patient education development projects can use the SAM instrument to create education material that is understandable, applicable, and culturally appropriate to the audience, and empowering to the patient. Also, material developers can use the SAM instrument to evaluate their already-developed materials. Printing the SAM scores, the reading grade level, and/or the specified audience on the health pamphlets and brochures might also aid health professionals in distributing the proper information to the specified audience. Additionally, illustrations and graphics should include positive cultural images for the specific audience, allowing for a match in logic, language, and experience. Finally, the content must facilitate self-efficacy so that readers feel empowered to be an active participant in their own healthcare.
Acknowledgements Supported by an award from the California department of Health Service Cancer.
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References [1] Foltz A, Sullivan JM. Limited literacy revisited implications for patient education. Cancer Pract 1999;7(3):145–50. [2] Doak CC, Doak LG, Root JH. Teaching patients with low literacy skills. 2nd ed. Philadelphia, PA: Lippincott; 1996. [3] Doak LG, Doak CC. Patient comprehension profiles: recent findings and strategies. Patient Educ Couns 1980;2(3):101–6. [4] Doak LG, Doak CC, Meade CD. Strategies to improve cancer education materials. Oncol Nurs Forum 1996;23(8):1305–12. [5] Davis TC, Mayeaux E, Fredrickson MD, Bocchini JA, Jackson R, Murphy P. Reading ability of parents compared with reading level of pediatric parent education materials. Pediatrics 1994;93:460–5. [6] Kagawa-Singer. Improving the validity and generalizability of studies with underserved US populations: expanding the research paradigm. Ann Epidemiol 2000;10:92–103. [7] Bandura A. Social foundations of thought and action: a social cognitive. Englewood Cliffs, NJ: Prentice Hall; 1986. [8] CDC Facts and Figures; 1999. [9] Fry E. Fry’s readability graphs: clarifications, validity, and extensions to level 17. J Read 1977;21:242–52.
[10] Black B. The community cancer detection, education, and prevention demonstration projects for socioeconomically disadvantaged populations: lessons learned-cancer screenings in underserved populations. Atlanta, GA: American Cancer Society; 1995. [11] O’Leary A. Self-efficacy and health. Behav Res Ther 1985;23(4): 437–51. [12] Davis TC, Williams MV, Marin E, Parker RM, Glass J. Health literacy and cancer communication. CA Cancer J Clin 2002;52(3):134– 49. [13] Wilson FL, McLemore R. Patient literacy levels: a consideration when designing patient education programs. Rehabil Nurs 1997;22(6):311–7. [14] Guidry JJ, Walker VD. Assessing cultural appropriateness in printed cancer materials. Cancer Pract 1999;7(6):291–6. [15] Mohrmann CC, Coleman EA, Coon SK, Lord JE, Heard JK, Cantrell MJ, et al. An analysis of printed breast cancer information for African American women. J Cancer Educ 2000;15(1):23–7. [16] Bandura A. Self-efficacy: toward a unifying theory of behavioral change. Psychol Rev 1977;84(2):191–215. [17] Doak CC, Doak LG, Friedell GH, Meade CD. Improving comprehension for cancer patients with low literacy skills: strategies for clinicians. Cancer J Clin 1998;48(3):151–61 [CA].
Suitability of prostate cancer education materials: applying a standardized assessment tool to currently available materials Debra Weintraub a , Sally L. Maliski a,∗ , Arlene Fink a,b , Sarah Choe a , Mark S. Litwin a,b a
Department of Urology, David Geffen School of Medicine, Jonsson Comprehensive Cancer Center, University of California, Box 951738, Los Angeles, CA 90095-1738, USA b Department of Health Services, School of Public Health, University of California, Los Angeles, CA 90095-1738, USA Received 25 April 2003; received in revised form 10 October 2003; accepted 23 October 2003
Abstract Written educational materials serve as important teaching instruments for prostate cancer patients and their families. However, they must be understandable for their intended audiences. We examined prostate cancer brochures and pamphlets using the Suitability Assessment of Materials (SAM) instrument for the materials’ overall suitability, readability, and cultural appropriateness. These factors are crucial to ensure that patients are able to understand and relate to the information. Our evaluation of 29 materials demonstrated that the majority, 22 (75.8%), scored “adequate” for their overall suitability. However, 26 materials (90%) scored “not suitable” for their reading grade level, while 55% of the materials could not be rated on cultural appropriateness because of lack of cues about the intended audience. Also, many of the materials scored poorly on content, graphics, self-efficacy, and learning motivation and stimulation. Most of the materials did well with typography and layout. Overall, the findings point to the need to carefully assess written materials used for multicultural audiences with low reading ability. © 2003 Published by Elsevier Ireland Ltd. Keywords: Prostate cancer; Patient education; Readability
1. Introduction Readable and suitable patient education materials can be effective teaching aids for adult learners [1]. However, most health education materials are produced with inadequate attention to their suitability for the intended audience [2]. Furthermore, it is estimated the 23 million Americans do not understand information given to them by health professionals [3], and people at all literacy levels prefer simple written materials over complex materials [4,5]. This is especially true during times of stress such as having received a cancer diagnosis. Additionally, people are empowered to learn and retain the information better if it is culturally appropriate [6], encourages positive behaviors as achievable, and models behaviors and skills [7]. Thus, patient education information is inaccessible to individuals who cannot read well, understand, or relate to the material presented. Because prostate cancer is the most common noncutaneous cancer among American men [8], it is essential ∗ Corresponding author. Tel.: +1-310-794-4084; fax: +1-310-267-2623. E-mail address: [email protected] (S.L. Maliski).
0738-3991/$ – see front matter © 2003 Published by Elsevier Ireland Ltd. doi:10.1016/j.pec.2003.10.003
to have available, prostate cancer patient education materials that are understandable and appropriate. While prostate cancer is most common among African Americans it also adversely affects Latino, Asian, Pacific Islander, and Caucasian men [8] many of whom carry the burden of low literacy and being underserved. The need for understandable materials is especially critical for men diagnosed with early stage prostate cancer, because they are faced with the challenge of choosing among several treatments. These men need to be well-informed in order to participate knowledgeably and confidently in the treatment decision-making process. Men at later stages of the disease need to understand their treatments and how to manage symptoms and side effects. Therefore, materials used to help men with prostate cancer need to be evaluated for their ability to present crucial information in an understandable and meaningful way. Thus, the purpose of this study was to evaluate readily available, written prostate cancer patient education materials for reading level, cultural appropriateness, learning stimulation and motivation, content presentation, and graphics, typography and layout.
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2. Methods 2.1. Collection of materials Printed prostate cancer materials were acquired through a national telephone and email solicitation for English-language materials in December 2001. In addition to requesting materials from nationally recognized organizations such as the American Cancer Society, National Cancer Institute, and American Foundation of Urologic Disease, we located materials through cancer resource guides and by conducting Internet searches with the terms prostate and prostate cancer. We applied the following inclusion criteria to the materials received: Materials had to be prostate cancer specific and written in English. 2.2. Assessment of patient education material The Suitability Assessment of Materials (SAM) instrument was used to evaluate prostate cancer patient education materials. Doak et al. developed the SAM instrument to score patient education materials on different factors, including readability, cultural appropriateness, and how well they enhance the reader’s self-efficacy [2]. The SAM gives researchers a convenient, standardized method for evaluating patient education materials. The SAM was tested and validated with individuals from a variety of cultural backgrounds [2]. It can be used when developing new materials [4] or to evaluate existing materials that span a variety of health issues. The SAM instrument can be found in the 1996 publication, Teaching Patients with Low Literacy Skills, by Doak et al. [2]. Overall suitability of a piece of patient education material generally relates to the total SAM score (Table 1). This score is obtained by adding the rating of each of the SAM’s 22 factors, grouped into six categories (content, literacy demand, graphics, layout and typography, learning stimulation and motivation, and cultural appropriateness) [2]. A percentage is calculated by dividing the sum of the ratings by the total possible score. Because not all factors are applicable to all materials, the total possible score can vary among materials. The percent scores are then grouped into ratings as follows: 0–39%, inadequate; 40–69%, adequate; and 70–100%, superior [2]. Content is evaluated based on whether the purpose is evident, the material is behavior-focused, the scope is limited to the purpose, and a summary is included. Literacy demand refers not only to the reading grade level, but also to use of active voice, vocabulary, position of context, and use of learning aids such as headers or topic captions. Reading level is determined by the Fry formula. The Fry formula is a commonly used calculation method that is valid between the 1st and the 17th (college plus 1 year of graduate school) grade levels [1]. It uses average numbers of sentences and syllables in 100-word passages to determine the reading level. We also applied the Flesch-Kincaid formula to determine
whether the writing style was in the active or passive voice [9]. Graphics are rated on whether they show the purpose, are recognizable or familiar, are relevant to the key message, are used to explain figures, and have captions. Layout evaluation considers position of illustrations, sequence of information, visual cueing, use of white space, use of color, line length, contrast between type and paper, and use of low-gloss paper. Typography is evaluated for text type, type size, use of typographic cues and use of capitalization. Also, considered under layout and typography is the use of subheads. Learning stimulation and motivation considers whether the material includes interaction, models specific behaviors or skills, and motivates through enhancing self-efficacy. We evaluated self-efficacy based on whether the material presented information with positive encouragement and broke complex concepts down into understandable sections. The assessment of cultural appropriateness includes match in logic, language and experience to the intended culture and the use of positive cultural images and examples. We assessed cultural appropriateness by first determining the target audience for each material based on the ethnicity of people portrayed the material’s pictures, illustrations, or name references that might indicate the ethnicity of the intended audience. If no cues were provided, we were not able to score cultural appropriateness for the intended audience. Therefore, cultural appropriateness was considered not applicable and was not included in the total SAM score calculations for these materials. When cues were present, we evaluated the cultural appropriateness items based on the illustrations, images, and examples [10,11]. Initially, we applied the SAM to six materials independently and then met to discuss discrepancies in interpretation of items. From this discussion we developed guides to consistently interpret and apply the SAM items. We applied the SAM to each patient education material, including the six test materials, to obtain suitability scores independently. Following published criteria, points were assigned to materials for each SAM category. The percentage of the total possible points yielded suitability ratings. The three investigators who evaluated the materials have a range of expertise in prostate cancer and patient education. One is completing graduate work in health education (DW). A second is an evaluation specialist (SC), and the third is an oncology nurse researcher specializing in prostate cancer (SLM), We met to review any discrepancies and negotiate 100% concordance in our ratings. Additionally, we consulted by email and teleconference with Leonard and Cecilia Doak, the SAM’s authors, to ensure proper application of the SAM and verify the accuracy of our scoring approach.
3. Results Of the 108 materials requested, 92 patient education materials were received. All were free of charge. Of these 92
Table 1 Overall suitability and readability of prostate cancer patient education materials based on the Suitability Assessment of Materials (SAM) instrument Education material title
Readable at 5th grade level
Culturally suitable
Overall SAM scorea (%)
American Cancer Society
After Diagnosis: Prostate Cancer: Understanding Your Treatment Options Managing Incontinence After Treatment for Prostate Cancer For Men Only: What You Should Know About Prostate Cancer Facts on Prostate Cancer Guidelines for the Early Detection of Prostate Cancer Man to Man News: Prostate Cancer News and Info from ACS’ Man to Man Program
Nob Nob No No No No
No Yes No cues No cues No cues Yes
66 67 66 47 63 58
American Cancer Society and Cancer Research Institute American Cancer Society and National Comprehensive Cancer Network American Foundation for Urologic Disease Astra Zeneca
What to do if Prostate Cancer Strikes
No
No cues
61
Prostate Cancer Treatment Guidelines for Patients
No
Yes
61
Resource Guide Choices for Prostate Cancer Choices for Personal Survival Prostate Cancer Staging and Grade Pattern Prostate Cancer: What it is and How it is Treated Early Detection Zoladex Goserelin Acetate Implant: Therapy for the Treatment of Prostate Cancer
No No No No No
No No No No No
cues cues cues cues cues
75 39 87 66 69
Nutrition and Prostate Cancer Prostate Cancer and Cryocare: Our Decision Guide The Complications Men Fear Most Know Your Options: A Prostate Cancer Education Program: Understanding Treatment Choices for Prostate Cancer Prostate Surgery and Its Potential Impact on Male Sexual Health What You Should Know About Prostate Cancer For Women Who Care: Info on Prostate Disease to Share with the Men in Your Life
No No No No
No cues No cues Yes Yes
50 55 68 74
No No No
No cues Yes Yes
69 43 80
Important Information About Prostate-Specific Antigen (PSA)
No
Yes
75
Keep Your Health Up To Par
No
Yes
59
Lifelines: A Guide to Life with Prostate Cancer Understanding Prostate Disease: A Guide to Treatment and Support Hormonal Therapy for Prostate Cancer Learning About Prostate Cancer Treatment Options
Nob
Yes Yes No cues
66 62 66 57
Detection of Prostate Cancer Two Against One: A Spouse’s Guide to Coping with Prostate Cancer Prostate Cancer Questions and Answers
No No No
No cues Yes No cues
67 73 47
CaP Cure Endocare In Touch National Cancer Institute Pfizer Prostate Cancer Research Institute Prostate Health Council Prostate Health Council c/o American Foundation for Urologic Disease TAP Pharmaceuticals, Inc.
UroCor Inc. and the Urology Company US Too! US Too! and National Cancer Institute a b
No No No
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Source
Suitability (overall suitability score) using the SAM: 70–100%, superior; 40–69%, adequate; 0–39%, not suitable—not applicable items were not figured into the scores. 6th–8th grade reading level.
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materials, 45 were not prostate cancer specific and 18 were not in English, leaving 29 pamphlets and brochures for evaluation. The prostate cancer written educational materials fell into the following categories: 8 brochures, 10 booklets, 7 books, 1 flyer, and 3 fact sheets. The main topics included general prostate cancer education (n = 10), screening (n = 4), treatment options (n = 7), and other issues such as diagnosis, side effects, and diet/nutrition (n = 8). Thirteen of the materials included illustrations of Caucasian people (n = 6) or people of various ethnicities (n = 7). The mean overall SAM score for all the materials was “adequate” at 63.3%. Of the 29 materials, SAM suitability scores were superior in 6 (20.6%), adequate in 22 (75.8%), and not suitable in 1 (3.4%). Content: Most of the materials stated their purpose in the title. However, very few of the materials rated “superior” in presenting content in a tangible, behavior-related context. That is, the content of the material mainly included facts about prostate cancer, not guides for patient behavior or decision-making. Additionally, 25 of 29 or 86% of the materials did not include a summary or review at the end, making them “not suitable”. Literacy demand: Overall, the materials scored poorly on readability with 26 (90%) of the materials scoring “not suitable” and 3 (10%) scoring “adequate”. The grade levels of the materials ranged from 7th grade to 17th grade. In examining whether the writing relied on commonly used vocabulary, only 4 (14%) scored “superior”. One material indicated its reading grade level on the inside cover. Graphics: In evaluating the cover graphic for each piece of material, we found that the majority rated “superior”. However, the use of illustrations within materials varied in suitability. The majority of graphics that showed the detailed male reproductive system did not locate it within the body for readers. In examining the lists and tables, we found that 76% of the materials did not include captions that detailed information included in the lists and tables. Layout and typography: The layout of most of the materials received high scores. The materials were mostly adequate and superior for the typography variables. One area that consistently led to lower ratings was the tendency to include too much information under subheadings. Learning stimulation and motivation: None of the materials provided interactive learning stimulation. In evaluating content for behavior modeling, 58.6% of the materials scored “adequate”. Evaluating the materials for motivation and self-efficacy revealed that 72.3% of the materials were “adequate” or “not suitable”. Cultural appropriateness: The brochures and pamphlets included 6 with Caucasians as the intended audience, 7 intended for a multi-ethnic audience, and 16 that provided no cues as to the ethnicity of their intended audience. Of the materials that could be rated for cultural appropriateness, we found that only 5 of the materials rated “superior”. We further examined cultural appropriateness by looking for pos-
itive, negative, or neutral representations of the target audience. Only 7 (24%) rated “superior” for using positive images and examples. Because there were no target audiences specified, 55% of the materials were rated “not applicable”. Therefore, they received no cultural appropriateness score and the cultural appropriateness items did not enter into the calculation of the total SAM score.
4. Discussion We were particularly interested in examining four qualities of the prostate cancer health information materials: overall suitability, readability, cultural appropriateness, and facilitation of self-efficacy. The materials we evaluated were adequate or superior in overall suitability. However, many materials scored poorly in readability, cultural appropriateness, and self-efficacy diminishing their value for low-literacy, multicultural audiences. This highlights the necessity for health professionals to carefully evaluate patient education materials that are being used to assist patients to understand their treatment options for decision-making and information needed for self-care, especially for those who might have limited reading ability or are from various cultural backgrounds. That 90% of the materials rated “not suitable” for their readability clearly demonstrates that reading level of materials was much too high, especially for low-literate audiences. The average reading level of Americans is approximately 6th–8th grade, and one in five have serious literacy limitations [2,12]. Among Americans 65 years or older who are members of inner-city minority groups, 40% read below the 5th grade reading level [2]. This lack of basic literacy skills can interfere with a patient’s ability to learn. Many who are indigent, elderly, or are from a minority group do not have the literacy skills necessary to function successfully within today’s healthcare system. Healthcare providers use educational materials to inform their patients, but many do not benefit from these materials because they cannot read or comprehend them [13]; the needed information is inaccessible. Cultural appropriateness of patient education materials is enhanced when readers see illustrations and graphics that are easily recognizable and that show people similar to themselves and those around them [2,9]. Many factors that affect the healthcare, such as cultural health beliefs and practices, differ among various ethnicities [14]. Thus, it is important to consider these factors when designing patient education messages. For example, in demonstration projects for socioeconomically disadvantaged people, it has been fount that the likelihood that printed cancer education materials for African Americans will translate into positive behavior changes is increased if the messages are delivered in a culturally sensitive manner specific to African Americans using illustrations and pictures of African American people and symbols [10]. Guidry and Walker found, using
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their Cultural Sensitivity Assessment Tools, that available prostate cancer educational materials specifically targeted to African Americans had a mean score of only 40% for cultural appropriateness based on format, written message, and visual message [14]. Mohrmann et al. found that printed educational materials on breast cancer do not adequately provide information to undereducated, economically disadvantaged African American women based on reading level and scores on the Cultural Sensitivity Assessment Tools developed by Guidry and Walker [15]. Our findings are consistent with these results indicating that most materials targeted to or potentially used by members of ethnic groups or people of low-literacy are unsuitable for these populations. Applying the concept of self-efficacy is an effective means of promoting positive health behavior and informed decision-making [16]. Self-efficacy theory explains and predicts how people influence their own motivation and behavior, including health behavior [7,16]. According to self-efficacy theory, behavior is influenced by outcome expectancies and efficacy expectancies [16]. Outcome expectancy is the belief that a behavior can influence the outcome of a situation. Efficacy expectancies are beliefs about one’s ability to perform the influencing action. A man without health insurance may believe that the surgery would cure his prostate cancer (outcome expectancy), but his self-efficacy is low if he believes that he cannot have the surgery because he cannot pay for it (efficacy expectancy). Doak et al. found that many patients cannot understand the health information they are given and, therefore, cannot act in a self-efficacious manner [17]. In order to enhance self-efficacy, materials need to model the desired behavior using someone similar to the intended audience. Providing testimonials is one way of accomplishing this. Using questions that encourage the reader to apply the information to his own situation or providing a means to keep track of PSA levels and appointments can enhance self-efficacy. Also, providing information in small, manageablesections and positive encouragement are other means by which written patient education materials can enhance self-efficacy. Very few of the materials reviewed used these or similar methods to enhance the reader’s self-efficacy. Results need to be interpreted with caution. Because the sample was convenience-based and taken only from nationally recognized prostate cancer organizations, the results may not be generalizable to all prostate cancer educational materials, all cancer educational materials, or written health education materials as a whole. We intentionally limited written prostate cancer health education materials to those distributed by well-known organizations. Independent organizations and/or community-based clinics may have developed their own educational materials that are more readable, suitable, or culturally sensitive. We might have strengthened our evaluation of the cultural appropriateness of prostate cancer-specific brochures and pamphlets by consulting members of various ethnic groups.
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Also, there are some issues to be considered in the application of the SAM instrument. There is latitude allowed in the interpretation of the criteria. This can lead to subjectivity in the rating of materials. While we attempted to minimize this by having three evaluators rate materials independently and then negotiate to consensus, bias was probably not entirely eliminated. Also, the SAM is difficult to apply when there are few overt cues as to the intended cultural audience. Even when there are cues such as pictures and graphics, they are only unvalidated proxies. This highlights an issue with the scoring of the SAM. As seen primarily with the cultural sensitivity items, when an item is considered “not applicable”, it is eliminated from the calculation of the total possible SAM score. Therefore, the percentage scores are based on different denominators calling into to question the comparability of the scores. One way to address this would be to group materials with the same items scored together and then compare scores only within groups. 4.1. Practice implications For health professionals concerned with providing information to patients to assist them with their treatment decision-making and care, such as is critical for men with prostate cancer, it is essential that they be aware of the suitability of written materials that they are using for patients. Clinicians need to ensure that the materials are understandable and help patients apply the information to their own situation in a meaningful way. If appropriate written material is not available, health professionals may need to explore developing appropriate materials. At a minimum, they need to review the information in ways that are understandable to the patient, ascertain understanding, and not rely on written material alone, especially when reading ability and cultural context may not match that of the material. Patient education development projects can use the SAM instrument to create education material that is understandable, applicable, and culturally appropriate to the audience, and empowering to the patient. Also, material developers can use the SAM instrument to evaluate their already-developed materials. Printing the SAM scores, the reading grade level, and/or the specified audience on the health pamphlets and brochures might also aid health professionals in distributing the proper information to the specified audience. Additionally, illustrations and graphics should include positive cultural images for the specific audience, allowing for a match in logic, language, and experience. Finally, the content must facilitate self-efficacy so that readers feel empowered to be an active participant in their own healthcare.
Acknowledgements Supported by an award from the California department of Health Service Cancer.
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