Quality of online information about phase I clinical cancer trials in Sweden, Denmark and Norway
Corresponding Author
Tove E. Godskesen
Department of Health Care Sciences, Ersta Sköndal Bräcke University College, Stockholm, Sweden
Centre for Research Ethics & Bioethics, Uppsala University, Uppsala, Sweden
Correspondence
Tove E. Godskesen, Department of Health Care Sciences, Ersta Sköndal Bräcke University College, Stockholm, Sweden.
Emails: [email protected], [email protected]
Search for more papers by this authorJosepine Fernow
Centre for Research Ethics & Bioethics, Uppsala University, Uppsala, Sweden
Search for more papers by this authorStefan Eriksson
Centre for Research Ethics & Bioethics, Uppsala University, Uppsala, Sweden
Search for more papers by this authorCorresponding Author
Tove E. Godskesen
Department of Health Care Sciences, Ersta Sköndal Bräcke University College, Stockholm, Sweden
Centre for Research Ethics & Bioethics, Uppsala University, Uppsala, Sweden
Correspondence
Tove E. Godskesen, Department of Health Care Sciences, Ersta Sköndal Bräcke University College, Stockholm, Sweden.
Emails: [email protected], [email protected]
Search for more papers by this authorJosepine Fernow
Centre for Research Ethics & Bioethics, Uppsala University, Uppsala, Sweden
Search for more papers by this authorStefan Eriksson
Centre for Research Ethics & Bioethics, Uppsala University, Uppsala, Sweden
Search for more papers by this authorAbstract
Patients increasingly search for online information about clinical trials. Little is known about the quality and readability of the information in these databases. Therefore, the aim of this study was to assess the quality and readability of online information available to the public on phase I clinical cancer trials in Sweden, Denmark and Norway. A qualitative content analysis was made of 19 online trial descriptions from three public websites in Sweden, Denmark and Norway, and the readability of the documents was tested. Both the quality of the content and the readability scores were best for the Danish information. The Swedish texts were very short and were the least readable. Overall, the quality of the information was highly variable and nearly all the documents were misleading in part. Furthermore, the descriptions provided almost no information about possible adverse effects or disadvantages of study participation. This study highlights a communication problem and proposes new ways of presenting studies that are less suggestive of positive outcomes, arguing that we should be more careful to include information about adverse effects, and that the use of simple measures like readability testing can be useful as an indicator of text quality.
REFERENCES
- Abel, G. A., Cronin, A. M., Earles, K., & Gray, S. W. (2015). Accessibility and Quality of Online Cancer-Related Clinical Trial Information for Naive Searchers. CancerEpidemiology, Biomarkers & Prevention : A Publication of the American Association for Cancer Research, Cosponsored by the American Society of Preventive Oncology, 24, 1629–1631. https://doi.org/10.1158/1055-9965.EPI-15-0274
10.1158/1055-9965.EPI-15-0274 Google Scholar
- Andreassen, H. K., Bujnowska-Fedak, M. M., Chronaki, C. E., Dumitru, R. C., Pudule, I., Santana, S., … Wynn, R. (2007). European citizens' use of E-health services: A study of seven countries. BMC Public Health, 7, 53. https://doi.org/10.1186/1471-2458-7-53
- Arkenau, H. T., Olmos, D., Ang, J. E., Barriuso, J., Karavasilis, V., Ashley, S., … Kaye, S. (2008). 90-Days mortality rate in patients treated within the context of a phase-I trial: How should we identify patients who should not go on trial? European Journal of Cancer, 44, 1536–1540. https://doi.org/10.1016/j.ejca.2008.04.017
- Ash, S. E. (1946). Forming impressions of personality. Journal of Abnormal and Social Psychology, 41, 258–290. https://doi.org/10.1037/h0055756
- Atkinson, N. L., Saperstein, S. L., Massett, H. A., Leonard, C. R., Grama, L., & Manrow, R. (2008). Using the Internet to search for cancer clinical trials: A comparative audit of clinical trial search tools. Contemporary Clinical Trials, 29, 555–564. https://doi.org/10.1016/j.cct.2008.01.007
- Bailin, A., & Grafstein, A. (2001). The linguistic assumptions underlying readability formulae. Language & Communication, 21, 285–301. https://doi.org/10.1016/S0271-5309(01)00005-2
- Beauchamp, T. L., & Childress, J. F. (2009). Principles of biomedical ethics, 6th ed. New York, NY: Oxford University Press.
- Björnsson, C. H. (1968). Läsbarhet. Stockholm: Bokförlaget Liber.
- Dolinsky, C. M., Wei, S. J., Hampshire, M. K., & Metz, J. M. (2006). Breast cancer patients' attitudes toward clinical trials in the radiation oncology clinic versus those searching for trial information on the Internet. The Breast Journal, 12, 324–330. https://doi.org/10.1111/j.1075-122X.2006.00270.x
- Emanuel, E. J. (2008). The Oxford textbook of clinical research ethics. New York, NY: Oxford University Press, Oxford.
10.1093/oso/9780195168655.001.0001 Google Scholar
- Fernan, C., Schuldt, J. P., & Niederdeppe, J. (2017). Health halo effects from product titles and nutrient content claims in the context of "protein" bars. Health Communication, 33, 1425–1433. https://doi.org/10.1080/10410236.2017.1358240
- Gilbert, D. T., Krulloch, D. S., & Malone, P. S. (1990). Unbelieving the unbelievable: Some problems in the rejection of false information. Journal of Personality and Social Psychology, 59, 601–613. https://doi.org/10.1037/0022-3514.59.4.601
- Gilovich, T., Griffin, D. W., & Kahneman, D. (2002). Heuristics and biases : The psychology of intuitive judgment. New York, NY, Cambridge, UK: Cambridge University Press.
- Godskesen, T., Nygren, P., Nordin, K., Hansson, M., & Kihlbom, U. (2013). Phase 1 clinical trials in end-stage cancer: Patient understanding of trial premises and motives for participation. Supportive Care in Cancer, 21, 3137–3142. https://doi.org/10.1007/s00520-013-1891-7
- Henderson, G. E., Churchill, L. R., Davis, A. M., Easter, M. M., Grady, C., Joffe, S., … Zimmer, C. R. (2007). Clinical trials and medical care: Defining the therapeutic misconception. PLoS Med, 4, e324. https://doi.org/10.1371/journal.pmed.0040324
- Jansen, L. A., Appelbaum, P. S., Klein, W. M., Weinstein, N. D., Cook, W., Fogel, J. S., & Sulmasy, D. P. (2011). Unrealistic optimism in early-phase oncology trials. IRB, 33, 1–8.
- Kahneman, D. (2013). Thinking, fast and slow, 1st pbk. ed. New York, NY: Farrar, Straus and Giroux.
- Kincaid, P. J., Fischburne, R. P. J., Rogers, R. L., & Chisson, B. S. (1975). Derivation of new readability formulas (Automated Readability Index, Fog Count, and Flesch Reading Ease Formula) for Navy enlisted personnel. Research Branch Report. Naval Air Station Memphis - Millingon 8–75.
- Kirsch, I. S., Jungeblut, A., Jenkins, L., & Kolstad, A. (2002). Adult literacy in America: A first look at the findings of the national adult literacy survey. Retrieved from https://nces.ed.gov/pubsearch/pubsinfo.asp?pubxml:id=93275
- Lidz, C. W., & Appelbaum, P. S. (2002). The therapeutic misconception: Problems and solutions. Medical Care, 40, V55–V63. https://doi.org/10.1097/00005650-200209001-00008
- Mclaughlin, G. H. (1969). SMOG grading: A new readability formula. Journal of Reading, 12, 639–646.
- Miller, J. W. (2016). World’s most literate nations. Retrieved from https://www.ccsu.edu/wmln/rank.html
- Monaco, V., & Krills, S. K. (2003). On-line information about cancer clinical trials: Evaluating the Web sites of comprehensive cancer centers. AMIA Annu Symp Proc, 470–474.
- Mussweiler, T., & Strack, F. (2000). The use of category and exemplar knowledge in the solution of anchoring tasks. Journal of Personality and Social Psychology, 78, 1038–1052. https://doi.org/10.1037/0022-3514.78.6.1038
- Pawlowski, J., Malik, L., & Mahalingam, D. (2015). Advanced cancer patients' understanding and perceptions of phase I clinical trials. Cancer Investigation, 33, 490–495. https://doi.org/10.3109/07357907.2015.1069833
- Pentz, R. D., White, M., Harvey, R. D., Farmer, Z. L., Liu, Y., Lewis, C., … Khuri, F. R. (2012). Therapeutic misconception, misestimation, and optimism in participants enrolled in phase 1 trials. Cancer, 118, 4571–4578. https://doi.org/10.1002/cncr.27397
- Schleicher, A., Keese, M., & Encinas-Martin, M.(2012a). Country Note: Survey of Adult Skills First Results - Norway. Retrieved from https://www.aft.org/issues/
- Schleicher, A., Keese, M., & Encinas-Martin, M. (2012b). Country note: Survey of adult skills first results - SWEDEN. Retrieved from https://www.aft.org/issues/
- Schutta, K. M., & Burnett, C. B. (2000). Factors that influence a patient's decision to participate in a phase I cancer clinical trial. Oncology Nursing Forum, 27, 1435–1438.
- Sfi. (2014). Survey of Adult Skills - Denmark Summary of Danish PIAAC results.
- Wang, L. W., Miller, M. J., Schmitt, M. R., & Wen, F. K. (2013). Assessing readability formula differences with written health information materials: Application, results, and recommendations. Research in Social & Administrative Pharmacy:RSAP, 9, 503–516. https://doi.org/10.1016/j.sapharm.2012.05.009
- Weber, J. S., Levit, L. A., Adamson, P. C., Bruinooge, S. S., Burris 3rd, H. A., Carducci, M. A., … Schuchter, L. M. (2017). Reaffirming and clarifying the American society of clinical oncology's policy statement on the critical role of phase I trials in cancer research and treatment. Journal of Clinical Oncology, 35, 139–140. https://doi.org/10.1200/JCO.2016.70.4692
- Weiss, B., Coyne, D., Michielutte, R., Davis, T., Meade, C., Doak, L., & Furnas, S. (1998). Communicating with patients who have limited literacy skills: Report of the national work group on literacy and health. Journal of Family Practice, 46, 168–176.
