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What Patients Look for When Browsing Online for Pancreatic Cancer: The Bait Behind the Byte

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Abstract

Background

Suitability is a patient-centered metric defined as how appropriately health information is targeted to specific populations to increase knowledge. However, suitability is most commonly evaluated exclusively by healthcare professionals without collaboration from intended audiences. Suitability (as rated by intended audiences), accuracy and readability have not been evaluated on websites discussing pancreatic cancer.

Methods

Ten healthy volunteers evaluated fifty pancreatic cancer websites using the suitability assessment of materials (SAM instrument) for the materials’ overall suitability. Readability and accuracy were correlated.

Results

Ten recruited volunteers (ages 23–63, 50% female) found websites to be on average “adequate” or “superior” in suitability. Surgery, radiotherapy and nonprofit websites had higher suitability scores as compared to counterparts (p ≤ 0.03). There was no correlation between readability and accuracy levels and suitability scores (p ≥ 0.3). Presence of visual aids was associated with better suitability scores after controlling for website quality (p ≤ 0.01).

Conclusion

Suitability of websites discussing pancreatic cancer treatments as rated by lay audiences differed based on therapy type and website affiliation, and was independent of readability level and accuracy of information. Nonprofit affiliation websites focusing on surgery or radiotherapy were most suitable. Online information should be assessed for suitability by target populations, in addition to readability level and accuracy, to ensure information reaches the intended audience.

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Acknowledgements

This work was conducted with support from Harvard Catalyst | The Harvard Clinical and Translational Science Center (National Center for Research Resources and the National Center for Advancing Translational Sciences, National Institutes of Health Award UL1 TR001102) and financial contributions from Harvard University and its affiliated academic healthcare centers. The content is solely the responsibility of the authors and does not necessarily represent the official views of Harvard Catalyst, Harvard University and its affiliated academic healthcare centers, or the National Institutes of Health.

Author information

Author notes

  1. Joseph D. Mancias

    Present address: Department of Radiation Oncology, Dana-Farber Cancer Institute/Brigham and Women’s Hospital and Harvard Medical School, Boston, MA, USA

  2. Alessandra Storino and Camila Guetter have contributed equally to this work.

Authors and Affiliations

  1. Pancreas and Liver Institute, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, USA

    Alessandra Storino, Camila Guetter, Manuel Castillo-Angeles, Ammara A. Watkins, Joseph D. Mancias, Andrea Bullock, A. James Moser & Tara S. Kent

  2. Department of Surgery, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, USA

    Alessandra Storino, Ammara A. Watkins, A. James Moser & Tara S. Kent

  3. Department of Medicine, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, USA

    Andrea Bullock

  4. Surgical Education, Beth Israel Deaconess Medical Center, LMOB 9B, 110 Francis Street, Boston, MA, 02215, USA

    Tara S. Kent

Authors
  1. Alessandra Storino
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Corresponding author

Correspondence to Tara S. Kent.

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Funding

This work was supported by the Alliance of Families Fighting Pancreatic Cancer and the Griffith Family Foundation.

Conflict of interest

All the authors declare that they have no conflicts of interest.

Appendix

Appendix

Comparisons among SAM tool sections by treatment modality are found in Table 5.

Table 5 Mean suitability scores per section by treatment modality
Full size table

In terms of Content, surgery websites received better scores than alternative therapies (p = 0.002), chemotherapy (p = 0.003) and clinical trials (p ≤ 0.0001). Radiotherapy were scored more favorably than clinical trial websites (p = 0.002).

Regarding Literacy demand, surgery websites received better scores than alternative therapies (p = 0.001), chemotherapy (p = 0.006) and clinical trials (p ≤ 0.0001). Radiotherapy websites were superior to clinical trial websites (p = 0.0006).

Alternative therapies websites were perceived as having poorer layout than chemotherapy (p = 0.001), radiotherapy (p ≤ 0.0001) and surgery (p ≤ 0.0001). Clinical trial websites were inferior to surgery (p = 0.0018).

In Graphics, surgery websites were superior to alternative therapies (p ≤ 0.0001), chemotherapy (p = 0.031) and clinical trials (p = 0.0002). Radiotherapy websites were superior to alternative therapies (p = 0.04).

Surgery websites were superior to all other treatment modalities (p ≤ 0.0001) except radiotherapy in terms of learning stimulation. Clinical trial websites were also inferior to radiotherapy websites (p = 0.009).

In terms of cultural appropriateness, surgery websites were superior to alternative therapies (p = 0.013) and clinical trials (p = 0.022). Radiotherapy websites were also perceived as superior to alternative therapies (p = 0.04).

Comparisons among SAM tool sections by website affiliation are found in Table 6.

Table 6 Mean suitability scores per section by website affiliation
Full size table

In content, layout and cultural appropriateness, no differences were found between affiliations (p > 0.05). In Literacy demand, nonprofit and privately owned websites received better scores than media (p = 0.045 and p = 0.015, respectively). In graphics, nonprofit and academic were perceived as superior to media websites (p = 0.03 and p = 0.02, respectively). Moreover, in learning stimulation, nonprofit (p = 0.007) and privately owned websites (p = 0.013) were superior to media.

Glossary

Accuracy

The degree of concordance of the information provided with the best available evidence as evaluated by an expert panel. Scored as follows [8]: “1” for ≤ 25% of information was accurate, “2” for 26–50% of information was accurate, “3” for 51–75% of information was accurate, “4” for 76–99% of information was accurate and “5” for 100% of information was accurate.

Health literacy

The ability to read, understand and act on healthcare information includes the ability to comprehend prescription labels, insurance forms and other health-related information.

Patient education material (PEM)

Information presented with the intended goal of educating patients.

Readability

The number of years of education required to comprehend written information computed using five standardized tests: Coleman–Liau index, Flesch–Kincaid grade level, Gunning fog index, Gobbledygook readability formula and automated readability index.

Rapid estimate of adult literacy in medicine, revised (REALM-R)

An 8-item instrument designed to rapidly screen patients for potential health literacy problems. Patients scoring 6 or less are considered at risk of low health literacy.

Suitability

The appropriateness of educational materials to the need of the intended audience. In other words, how likely patients are to choose, read, understand and act on the information provided.

Suitability assessment of materials (SAM)

Standardized measure of suitability that considers six sections: content, literacy demand, graphics, layout and type, learning stimulation and motivation, and cultural appropriateness. SAM score is a percentage obtained by dividing the sum of ratings by total possible score. Websites scoring 0–39% were not suitable; 40–69% were adequate; and 70–100% were superior.

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Storino, A., Guetter, C., Castillo-Angeles, M. et al. What Patients Look for When Browsing Online for Pancreatic Cancer: The Bait Behind the Byte. World J Surg 42, 4097–4106 (2018). https://doi.org/10.1007/s00268-018-4719-2

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