Health literacy strategies to improve engagement of Merkel cell carcinoma patients in their care.

Dear Sir,

The COVID-19 pandemic has accelerated the rise of online health education tools and telehealth platforms, expanding the reach of providers beyond the constraints of traditional clinical settings. This rapid expansion of digital technology has introduced an unprecedented amount of health information within reach of patients. With convenient access to online health educational materials (HEMs), patients can stay informed about their health conditions and treatment choices. Prior studies have demonstrated that increased patient involvement in their treatment process improves health outcomes, an increasingly important observation for patients with diseases for which early recognition and treatment minimize morbidity and mortality.

Merkel cell carcinoma (MCC) is a highly aggressive neuroendocrine tumor with a five-year survival rate of up to 65%. Similar to other cutaneous tumors, MCC typically presents in patients over age 65. Innovative digital health tools have been designed to optimize skin cancer management and treatment. However, advanced age patients utilize these digital health tools the least among all age groups, despite being those who may benefit the most. Prior studies have recommended the need to bridge this “digital divide” by improving readability and accessibility of health information from electronic sources. To facilitate these efforts, the American Medical Association (AMA) has recommended that health information be presented at no higher than a 6th grade reading level; however, HEMs of various high-risk dermatologic patient populations (e.g. transgender individuals) have failed to satisfy this recommendation. Our primary objective was to evaluate the readability of online HEMs for Merkel cell carcinoma.

We entered the search term “Merkel cell carcinoma” into Google Chrome, performing our query on incognito mode to prevent prior search history from biasing results. We considered that patients typically access webpages from the first page of results and tend not to access academic journals. Therefore, we selected the first 7 websites and webpages within one click of each parent website, and excluded articles published in academic journals. Additional inclusion criteria for HEMs were English language and text greater than 150 words. We converted articles meeting inclusion criteria into plain text and inputted this text into the Automatic Readability Checker from ReadabilityFormulas.com. The calculator evaluates written text and provides a reading grade level using six validated formulas: Gunning Fog Index (GFI), Flesch-Kincaid Grade Level (FKGL), Coleman-Liau Index (CLI), Simple Measure of Gobbledygook (SMOG), Automated Readability Index (ARI), and Linsear Write Formula (LWF) (Supplemental Table).

Forty-one webpages met inclusion criteria and were analyzed for reading grade levels. Mean readability scores of included articles ranged from 8th to 14th grade (Table 1 ). The mean scores for each readability test in decreasing order were GFI, 13.0; LWF, 11.9; Flesch-Kincaid Grade Level, 10.7; CLI, 10.5; ARI, 10.5; SMOG, 9.8 (Figure 1 ). Among the 41 webpages included for analysis, the six most readable webpages scored on average at an eighth-grade reading level.

Table 1

Comparison of readability of online patient education materials for Merkel cell carcinoma .

Website	Organization	Number of Articles	Mean Grade Level (SD)
		41	10.9 (1.9)
mayoclinic.org	Mayo Clinic	2	8.5 (0.7)
Skincancer.org	Skin Cancer Foundation	4	10.75 (2.5)
Merkelcell.org	Merkelcell.org	24	11.5 (1.6)
Cancer.gov	NIH National Cancer Institute	1	9
Aad.org	American Academy of Dermatology	5	9.5 (1.1)
Cancer.org	American Cancer Society	3	9 (1.7)
Clevelandclinic.org	Cleveland Clinic	1	10
Dermnetnz.org	DermNet NZ	1	12

Abbreviations: SD: standard deviation.

Figure 1

Box and whiskers plot comparing grade reading level scales.

Abbreviations: GFI: Gunning Fog Index; FKGL: Flesch-Kincaid Grade Level; CLI: Coleman-Liau Index; SMOG: Simple Measure of Gobbledygook; ARI: Automated Readability Index; LWF: Linsear Write Formula.

Here, box and whisker plots for each readability scale are depicted. For each box plot, the horizontal line transversing the box represents the median. The first quartile (i.e. median of data points below the true median) is drawn to the third quartile (i.e. median of data points above the true median) to form the box. The whisker that extends vertically downward from the box is the minimum and the whisker that extends upward is the maximum. A dotted line is used as a reference for the recommended readability level (6th grade) provided by the American Medical Association (AMA).

Our analysis highlights that online HEMs for MCC may contain information that is difficult to comprehend, rendering them less useful for patients. Even the most readable HEMs identified were written at an eighth-grade reading level, still two grade levels higher than that recommended for HEMs by the American Medical Association. Limitations of this study include not evaluating aspects of online HEMs other than readability which may influence patient comprehension, including graphics, font size, and accuracy of the provided information. Additionally, we acknowledge that while websites like DermNet NZ are likely to be accessed by MCC patients, they are geared more toward physicians, which explains their higher reading grade level relative to other HEMs.

The aging population of the U.S. is driving the rise in incidence of MCC. Because of the complexity and highly aggressive nature of the disease, early detection of MCC and optimal management by an interdisciplinary care team (e.g. plastic surgery, medical/surgical/radiation oncology, dermatology) are critical for improved outcomes. Increasing numbers of specialists coordinating care, however, may result in more chances for patient comprehension to fall through the cracks. As MCC presents in older patients who already face disparities in digital health access, it is important that we create online HEMs allowing MCC patients to adequately comprehend their multifaceted disease and treatment. We suggest that authors of MCC HEMs improve readability by using simpler phrases, avoiding medical jargon when possible, and creating bulleted summaries. Optimizing visual presentation (e.g. using aesthetically pleasing font size and style, bolding text, and adding infographics) can supplement written text and support MCC patients in comprehension of their disease process. Providers are already being pressured to transfer patient interaction and engagement towards the digital realm in the wake of the COVID-19 pandemic. To adapt to the ever-changing healthcare landscape, providers should direct patients to websites specifically designed to match patients’ literacy levels, as well as implement interventions designed to engage patients of all ages in navigating technological advancements in digital health.

Funding

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Ethical approval

Not required

Declaration of Competing Interest

None