Evaluating the Readability of Patient Education Materials for Anterior Vertebral Body Tethering, Distraction-Based Methods, and Posterior Spinal Fusion for the Treatment of Pediatric Spinal Deformity

Discussion

AVBT has been recognized as a novel, minimally invasive technique that provides an alternative to distraction-based methods and PSF for the treatment of pediatric spinal deformity. As is true for any new procedure, the effective dissemination of PEM is essential for properly informing surgical candidates of the risks and benefits of AVBT compared with alternative treatment methods. While AVBT presents a viable option for some patients, its appropriateness varies among individual cases. Notably, the decision to pursue AVBT vs other modalities should be informed by a comprehensive understanding of the risks and benefits associated with each treatment method. To our knowledge, this is the first study to evaluate the readability of online PEMs related to AVBT in comparison to PSF and distraction-based methods.

The results of our study highlight that the vast majority of online PEM pertaining to AVBT, distraction-based methods, and PSF are written well above the recommended RGL. In fact, the overall mean RGL for the analyzed PEMs was that of a high school senior, nearly 6 grade levels above the national recommendations. Overall, AVBT was found to be written at a higher reading level when compared with distraction-based methods and PSF. Upon further subgroup analysis stratifying between website type, AVBT was found to be written at a higher reading level compared with the other 2 treatment methods across GMWs; however, this statistical significance was lost among AHIWs. The readability of PEMs pertaining to AVBT, distraction-based methods, and PSF exceeding the target audience reading level ties into the broader concept of health literacy and its impact on overall child health outcomes.

Health literacy, defined as the “degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions,” has been shown to be the single greatest indicator of an individual’s health status.15,29 Lower health literacy has been associated with a worse understanding of the surgical procedure involved, lack of compliance with perioperative instructions, and higher rate of hospitalization, postoperative complications, and mortality.30–33 Parental health literacy is particularly important in pediatric surgical settings, where parents are often tasked to make decisions for their children on treatment methods with relatively large risks involved. Low health literacy on behalf of a parent is associated with increased levels of parental anxiety, which can influence a child’s perioperative course.34,35 Finally, poor health literacy has an economic impact, with an annual cost of more than US $50 billion to the US health care system.15

The Institute of Medicine Health Literacy Report found that 90 million American adults lack the literacy skills to use the US health care system effectively.29 They recommended developing ways to reduce the negative effects of limited health literacy. Designing online PEMs to provide accurate information that is easily comprehended by patients with limited health literacy is one such strategy. The access to and use of online PEMs has, to a large extent, transformed the physician-patient relationship; however, the wide availability of high-quality information does not translate to reader comprehension. The American Medical Association,15 the Agency for Health care Research and Quality,16 and the National Work Group in Cancer and Health17 recommend that PEMs be written at a sixth-grade reading level or lower, and the National Institutes of Health (NIH) recommend that PEMs not exceed the seventh- to eighth-grade levels.36 Nevertheless, studies have shown that the reading level of PEMs is too advanced across numerous pediatric subspecialties and in pediatric orthopedics specifically.18–21

Badarudeen and Sabharwal37 examined the patient education libraries of the American Academy of Orthopedic Surgeons (AAOS) and the Pediatric Orthopedic Society of North America and found that the majority of PEMs pertaining to pediatric orthopedics were too complex for the general US population. Ten years later, Doinn et al38 evaluated the readability of PEMs in pediatric orthopedics provided by the AAOS, Pediatric Orthopedic Society of North America, and American Academy of Pediatrics websites to determine whether any progress had been made. Once again, they concluded that the readability scores exceeded recommendations. When it comes to the complexity of spinal disorders and treatment for complex spinal deformity in children, the necessity of comprehensible online PEMs is even more pronounced. Time constraints during a physician-patient encounter, lack of medical knowledge on behalf of the patient and family, and the complexity of the procedures involved may further hinder comprehension. Vives et al24 conducted an internet search of PEMs on the North American Spine Society, American Association of Neurological Surgeons, and AAOS and found that most of the spine-related PEMs had readability scores that were too high.

The results of this present study corroborate the results of the aforementioned studies and highlight that PEMs are still being written at a level well above the national recommendations. This was found to be true across the board for PEMs written for AVBT, distraction-based therapies, and PSF, whether they are provided by websites affiliated with an academic medical center (AHIWs) or general medical organization (GMWs). Furthermore, AVBT was found to be written at a higher reading level than the other 2 treatment methods among GMWs. While the reasons for this requires additional study, we suspect that higher RGLs of AVBT PEMs may be influenced by the technique’s relative novelty. Similarly, AVBT entails technical growth concepts that may be challenging to describe to the public. Nonetheless, it is crucial that this technique be described in a manner that is easily understandable. Physicians are used to writing in a style that is suited for comprehension by other physicians, such as in scientific journals. It is perhaps due to this that physicians lack the awareness of the drastic difference in reading comprehension among their peers and the general population. Interestingly, when selecting for AHIWs alone, AVBT was not found to be written at a significantly higher reading level than distraction-based methods or PSF. This result supports the conclusion that at the very least, patients could be navigated toward websites that are affiliated with a university or academic medical center, as these seem to be more consistent. Nevertheless, PEMs for those 3 treatment modalities were still well above the national recommended reading level, and there is still much work to be done to correct this discrepancy.

Our findings support the need for greater awareness among providers and authors of PEMs to provide information that is more easily comprehensible and accessible to the general public. There are in fact examples where efforts to improve the readability of PEMs have been effective. Sheppard et al39 improved readability levels of PEMs in foot and ankle surgery by shortening sentences to no more than 15 words according to the NIH guidelines. They showed that this intervention improved the readability of 8 articles by an average of 1.41-grade levels. Although we showed that PEMs for AVBT, PSF, and distraction-based methods exceeded the recommended level by 5.1 grades, this small effort can be influential in closing this large gap in comprehension. Other suggestions for improving the readability of PEMs have been previously reported. Limiting sentences to 8 to 10 words, avoiding complex medical terms, good formatting, and simple nuances such as color, font type, size, and inclusion of illustrations can enhance comprehension.17,40,41

The results of this study should be interpreted in light of several limitations. First, the study only compares written materials. Videos, figures, and diagrams, which may impact health literacy, were not included in the analysis. Other tools, such as the Suitability Assessment of Materials and the PEMs Assessment Tool, can be used to include nontextual elements in the analysis. However, we decided not to use these tools because they do not produce a quantifiable target such as an RGL that can be used to compare to national recommendations. In addition, only English language resources were included. Readability of resources in other languages may differ, thus impacting the understanding of patients for whom English is not the preferred language. Finally, it was assumed that the reading and comprehension skills of patients and families seeking treatment for scoliosis were reflective of the reported reading and comprehensive skills of the general public. We did not perform an analysis to directly assess the reading and comprehension skills of our patient population specifically.

Nonetheless, the results suggest that patients would likely benefit from published material that is written at an appropriate reading level, or at the very least be directed toward AHIWs. The majority of patients expect their physician to recommend specific online resources. As such, physicians should be aware of these findings so that they can better guide their patients and families or implement other teaching modalities to improve understanding of proposed procedures.