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Challenges in Producing Tailored Internet Patient Education Materials
International Journal of
Radiation Oncology biology
physics
www.redjournal.org
BRIEF OPINION
Challenges in Producing Tailored Internet Patient Education Materials Joe Jabbour, BMedSci (Hons), MBBS (Hons),*,y Haryana M. Dhillon, BSc, PhD,z,x Heather L. Shepherd, BA (Hons), PhD,z,x Puma Sundaresan, PhD, FRANZCR,y,k Chris Milross, MD, FRANZCR,y,{ and Jonathan R. Clark, FRACS, MBiostaty,#,** *Westmead Hospital, Westmead; yCentral Clinical School, The University of Sydney, Sydney; z Psycho-Oncology Cooperative Research Group, School of Psychology, and xCentre for Medical Psychology and Evidence-Based Decision-Making, The University of Sydney, Camperdown; k Crown Princess Mary Cancer Centre, Westmead Hospital, Westmead; {Department of Radiation Oncology and Medical Services, and #Sydney Head and Neck Cancer Institute, Chris O’Brien Lifehouse, Camperdown; and **South West Clinical School, University of New South Wales, New South Wales, Sydney, Australia Received Nov 3, 2016. Accepted for publication Nov 16, 2016.
We appreciate Prabhu et al (1) highlighting the importance of appropriate reading levels for Internet patient education materials (IPEMs) using National Institutes of Health and American Medical Association guidelines (2). Although we agree that patient education resources need to be tailored to patient education levels, we would like to emphasize some of the barriers to meeting these guidelines. As the term suggests, patient education materials aim to educate patients, families, and the public about medical information; in doing so they can increase health literacy. Resources do this by supporting verbal explanations of complex terminology, concepts, and interventions. To achieve their educational goals, the resources need to be accurate and understood by the target audience (3). Although prioritized in guidelines, readability is a single facet in achieving this goal. The suitability of IPEMs may vary despite identical reading grade levels (4), and there are several reason for this. First, readability scales do not assess video, visual aids, graphs, or pictures, which may enhance understanding (5). Reprint requests to: Joe Jabbour, BMedsci (Hons), MBBS (Hons), Westmead Hospital, Westmead, NSW 2145, Australia. E-mail: [email protected] Int J Radiation Oncol Biol Phys, Vol. 97, No. 4, pp. 866e867, 2017 0360-3016/$ - see front matter Ó 2016 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.ijrobp.2016.11.023
Second, medical terminology, used to define commonly encountered terms, frequently has 3 or more syllables, leading to poor readability scores. Third, well-designed IPEMs cater to the full range of literacy levels by layering information, allowing more able and interested readers to move from simple to detailed information (5). These issues have been highlighted during the development of a dedicated head and neck cancer (HNC) patient education website (www.beyondfive.org.au). Patients with HNC are diverse, representing the full range of education levels. Despite aiming for reading levels between 3rd and 7th grade, achieving this has been challenging. We found that removal of any medical terms from information can improve the ease of reading score and reduce the reading grade level. For example, simply changing the term “histopathology” to “path” and removing the word “pathologist” can increase the reading ease by 12 points and drop the reading grade level by 2 grades (see Table 1 for more examples). However, to do so compromises the educational value of materials. Patients benefit from access to clear
Volume 97 Number 4 2017 Table 1
Tailoring Internet patient education materials
867
Impact of removing explanatory medical terms from information statements on readability assessment scores Statement
Histopathology is when part or all of the cancer cells are looked at under a microscope. The cancer cells are usually collected during a biopsy and sent to a doctor trained in looking at cells in the body (pathologist) for testing. The pathologist will be able to tell your doctor the type of cancer, its grade, and other details that will help your doctor work out the best treatment for your type of cancer. Path is when part or all of the cancer cells are looked at closely. The cancer cells are usually collected during a biopsy and sent to a doctor trained in looking at cells in the body for testing. They will be able to tell your doctor the type of cancer, its grade, and other details that will help your doctor work out the best treatment for your type of cancer. Nasopharyngeal cancers grow in the throat behind the nose Cancers can grow in the throat behind the nose
Average syllables/word
Gunning Fog index, years formal education
Flesch Kincaid grade level
Flesch reading ease
1.51
12.57
11.89
53.76
1.39
10.48
9.86
65.92
1.67
8.04
7.59
56.7
1.22
3.6
2.34
94.3
information describing diagnoses and procedures in a way that provides context and meaning to the medical terms they are likely to encounter during their engagement with the health system. Therefore, we recommend retaining medical terms in written information but excluding them from inclusion in the readability assessment to ensure readability scores are not inflated. The current American Cancer Society guidelines place an emphasis on providing or referring HNC survivors to appropriate resources to meet their needs. Websites can provide resources with multiple formats (written, audio, video, animations, forums) (3, 6, 7). Importantly, there are several approaches to assessing education resources that do not depend solely on readability scores; examples include the Evaluative Linguistic Framework and the Patient Education Material Assessment Tool Guide (5, 8). Both approaches, predating Prabhu’s study, offer guidance on developing patient education material content and evaluating it. It is time to move beyond the simplistic readability assessment of patient education materials in both their development and evaluation. To support this change, professional bodies must update their guidelines to incorporate comprehensive approaches to information evaluation. Finally, an important element often overlooked is the education of healthcare professionals regarding availability and optimal use of resources (9). Healthcare professionals are important in introducing resources to patients and providing guidance on how to access and use them. For patients with lower health-literacy, this component is critical for efficient navigation and access to suitable online resources. The importance of health care professional
endorsement of high-quality information resources, and working through them effectively with patients, cannot be underestimated as a powerful reinforcer for patients to use these resources again.
References 1. Prabhu AV, Hansberry DR, Agarwal N, et al. Radiation oncology and online patient education materials: Deviating from NIH and AMA recommendations. Int J Radiat Oncol Biol Phys 2016;96:521-528. 2. Cheng C, Dunn M. Health literacy and the Internet: A study on the readability of Australian online health information. Aust N Z J Public Health 2015;39:309-314. 3. Girault A, Ferrua M, Lalloue B, et al. Internet-based technologies to improve cancer care coordination: Current use and attitudes among cancer patients. Eur J Cancer 2015;51:551-557. 4. Balakrishnan V, Chandy Z, Hseih A, et al. Readability and understandability of online vocal cord paralysis materials. Otolaryngol Head Neck Surg 2016;154:460-464. 5. Hersh L, Salzman B, Snyderman D. Health literacy in primary care practice. Am Fam Physician 2015;92:118-124. 6. Cohen EE, LaMonte SJ, Erb NL, et al. American Cancer Society head and neck cancer survivorship care guideline. CA Cancer J Clin 2016; 66:203-239. 7. Simo R, Homer J, Clarke P, et al. Follow-up after treatment for head and neck cancer: United Kingdom National Multidisciplinary Guidelines. J Laryngol Otol 2016;130:S208-S211. 8. Shoemaker SJ, Wolf MS, Brach C. Development of the Patient Education Materials Assessment Tool (PEMAT): A new measure of understandability and actionability for print and audiovisual patient information. Patient Educ Couns 2014;96:395-403. 9. Bylund CL, Gueguen JA, D’Agostino TA, et al. Doctor-patient communication about cancer-related internet information. J Psychosoc Oncol 2010;28:127-142.
Radiation Oncology biology
physics
www.redjournal.org
BRIEF OPINION
Challenges in Producing Tailored Internet Patient Education Materials Joe Jabbour, BMedSci (Hons), MBBS (Hons),*,y Haryana M. Dhillon, BSc, PhD,z,x Heather L. Shepherd, BA (Hons), PhD,z,x Puma Sundaresan, PhD, FRANZCR,y,k Chris Milross, MD, FRANZCR,y,{ and Jonathan R. Clark, FRACS, MBiostaty,#,** *Westmead Hospital, Westmead; yCentral Clinical School, The University of Sydney, Sydney; z Psycho-Oncology Cooperative Research Group, School of Psychology, and xCentre for Medical Psychology and Evidence-Based Decision-Making, The University of Sydney, Camperdown; k Crown Princess Mary Cancer Centre, Westmead Hospital, Westmead; {Department of Radiation Oncology and Medical Services, and #Sydney Head and Neck Cancer Institute, Chris O’Brien Lifehouse, Camperdown; and **South West Clinical School, University of New South Wales, New South Wales, Sydney, Australia Received Nov 3, 2016. Accepted for publication Nov 16, 2016.
We appreciate Prabhu et al (1) highlighting the importance of appropriate reading levels for Internet patient education materials (IPEMs) using National Institutes of Health and American Medical Association guidelines (2). Although we agree that patient education resources need to be tailored to patient education levels, we would like to emphasize some of the barriers to meeting these guidelines. As the term suggests, patient education materials aim to educate patients, families, and the public about medical information; in doing so they can increase health literacy. Resources do this by supporting verbal explanations of complex terminology, concepts, and interventions. To achieve their educational goals, the resources need to be accurate and understood by the target audience (3). Although prioritized in guidelines, readability is a single facet in achieving this goal. The suitability of IPEMs may vary despite identical reading grade levels (4), and there are several reason for this. First, readability scales do not assess video, visual aids, graphs, or pictures, which may enhance understanding (5). Reprint requests to: Joe Jabbour, BMedsci (Hons), MBBS (Hons), Westmead Hospital, Westmead, NSW 2145, Australia. E-mail: [email protected] Int J Radiation Oncol Biol Phys, Vol. 97, No. 4, pp. 866e867, 2017 0360-3016/$ - see front matter Ó 2016 Elsevier Inc. All rights reserved. http://dx.doi.org/10.1016/j.ijrobp.2016.11.023
Second, medical terminology, used to define commonly encountered terms, frequently has 3 or more syllables, leading to poor readability scores. Third, well-designed IPEMs cater to the full range of literacy levels by layering information, allowing more able and interested readers to move from simple to detailed information (5). These issues have been highlighted during the development of a dedicated head and neck cancer (HNC) patient education website (www.beyondfive.org.au). Patients with HNC are diverse, representing the full range of education levels. Despite aiming for reading levels between 3rd and 7th grade, achieving this has been challenging. We found that removal of any medical terms from information can improve the ease of reading score and reduce the reading grade level. For example, simply changing the term “histopathology” to “path” and removing the word “pathologist” can increase the reading ease by 12 points and drop the reading grade level by 2 grades (see Table 1 for more examples). However, to do so compromises the educational value of materials. Patients benefit from access to clear
Volume 97 Number 4 2017 Table 1
Tailoring Internet patient education materials
867
Impact of removing explanatory medical terms from information statements on readability assessment scores Statement
Histopathology is when part or all of the cancer cells are looked at under a microscope. The cancer cells are usually collected during a biopsy and sent to a doctor trained in looking at cells in the body (pathologist) for testing. The pathologist will be able to tell your doctor the type of cancer, its grade, and other details that will help your doctor work out the best treatment for your type of cancer. Path is when part or all of the cancer cells are looked at closely. The cancer cells are usually collected during a biopsy and sent to a doctor trained in looking at cells in the body for testing. They will be able to tell your doctor the type of cancer, its grade, and other details that will help your doctor work out the best treatment for your type of cancer. Nasopharyngeal cancers grow in the throat behind the nose Cancers can grow in the throat behind the nose
Average syllables/word
Gunning Fog index, years formal education
Flesch Kincaid grade level
Flesch reading ease
1.51
12.57
11.89
53.76
1.39
10.48
9.86
65.92
1.67
8.04
7.59
56.7
1.22
3.6
2.34
94.3
information describing diagnoses and procedures in a way that provides context and meaning to the medical terms they are likely to encounter during their engagement with the health system. Therefore, we recommend retaining medical terms in written information but excluding them from inclusion in the readability assessment to ensure readability scores are not inflated. The current American Cancer Society guidelines place an emphasis on providing or referring HNC survivors to appropriate resources to meet their needs. Websites can provide resources with multiple formats (written, audio, video, animations, forums) (3, 6, 7). Importantly, there are several approaches to assessing education resources that do not depend solely on readability scores; examples include the Evaluative Linguistic Framework and the Patient Education Material Assessment Tool Guide (5, 8). Both approaches, predating Prabhu’s study, offer guidance on developing patient education material content and evaluating it. It is time to move beyond the simplistic readability assessment of patient education materials in both their development and evaluation. To support this change, professional bodies must update their guidelines to incorporate comprehensive approaches to information evaluation. Finally, an important element often overlooked is the education of healthcare professionals regarding availability and optimal use of resources (9). Healthcare professionals are important in introducing resources to patients and providing guidance on how to access and use them. For patients with lower health-literacy, this component is critical for efficient navigation and access to suitable online resources. The importance of health care professional
endorsement of high-quality information resources, and working through them effectively with patients, cannot be underestimated as a powerful reinforcer for patients to use these resources again.
References 1. Prabhu AV, Hansberry DR, Agarwal N, et al. Radiation oncology and online patient education materials: Deviating from NIH and AMA recommendations. Int J Radiat Oncol Biol Phys 2016;96:521-528. 2. Cheng C, Dunn M. Health literacy and the Internet: A study on the readability of Australian online health information. Aust N Z J Public Health 2015;39:309-314. 3. Girault A, Ferrua M, Lalloue B, et al. Internet-based technologies to improve cancer care coordination: Current use and attitudes among cancer patients. Eur J Cancer 2015;51:551-557. 4. Balakrishnan V, Chandy Z, Hseih A, et al. Readability and understandability of online vocal cord paralysis materials. Otolaryngol Head Neck Surg 2016;154:460-464. 5. Hersh L, Salzman B, Snyderman D. Health literacy in primary care practice. Am Fam Physician 2015;92:118-124. 6. Cohen EE, LaMonte SJ, Erb NL, et al. American Cancer Society head and neck cancer survivorship care guideline. CA Cancer J Clin 2016; 66:203-239. 7. Simo R, Homer J, Clarke P, et al. Follow-up after treatment for head and neck cancer: United Kingdom National Multidisciplinary Guidelines. J Laryngol Otol 2016;130:S208-S211. 8. Shoemaker SJ, Wolf MS, Brach C. Development of the Patient Education Materials Assessment Tool (PEMAT): A new measure of understandability and actionability for print and audiovisual patient information. Patient Educ Couns 2014;96:395-403. 9. Bylund CL, Gueguen JA, D’Agostino TA, et al. Doctor-patient communication about cancer-related internet information. J Psychosoc Oncol 2010;28:127-142.