Hypothesis / aims of study
In the current digital world where innovations quickly follow each other, there is a group of patients that cannot keep up. Low Literacy Skills (LLS) and Health Illiteracy (HI) that comes along with it, result in several health issues. First, HI patients tend to have less knowledge on health in general as well as on alarm symptoms, resulting in example given a higher complication rate. Research showed an understanding of the medical terms ‘erection’ in 50% and ‘incontinence’ in even only 5% of the HI patients. Secondly, HI patients have less information skills: navigating and orientating on the computer and internet is difficult. 20% Of Dutch people have low digital skills. Furthermore, costs rise by a higher number of cancelled operations and no shows on one hand, but in total more visits on the other. In the Netherlands these costs are estimated to be 127 million Euros per year, in the USA 73 billion Dollars per year. The extent of the HI problem is huge. Although education rates have increased worldwide over the years, still a considerable amount of people have HI: prevalences go up to 28% in the Netherlands, to 50% in the US and 62% in the east of Europe.
When we take a look at modern health care, shared decision making is a prominent issue. To facilitate this, decision aids are designed to promote patient participation in their health care decisions.
However, to be able to make good use of decision aids, adequate health skills are needed. To investigate the understandability of functional urological decision aids for this patient group, we tested the tools on their text complexity.
Study design, materials and methods
4 Online available functional urological decision aids in the Netherlands were tested. Subjects were Benign Prostate Hyperplasia (BPH, n=2), overactive bladder (n=1) and stress urinary incontinence (n=1). One of them (1 BPH) was made by an organization with an Easy Read quality mark.
Texts were analyzed by the T-Scan. This is a validated softwaretool that analyses Dutch texts on complexity on 400 text characteristics on word-, sentence-, paragraph- and text level. Results are conveyed into so called LiNT scores. These scores value between 0 and 1: the higher the score the better the understandability. The LiNT scores can be translated to text understandability levels. For example: a LiNT score of above 0.66 results in the easiest difficulty level, a score of 0.47-0.66 to a slightly more difficult level, etc. There is a total of 4 difficulty levels, whereof level 1 is the easiest and can be compared with the complexity of a simple travel blog and level 4 is the most difficult and can be compared with a scientific article.
Interpretation of results
All tested decision aids fell in the second-best understandability level. To clarify what this means in every day life: on average in this level the highest educated patients understood 70% of the information and the lowest educated patients understood only 38% of the information. Figures are worse as LiNT scores approach the third difficulty level. The text of the decision aid made with the Easy Read quality mark scores a high LiNT score, which means that the understandability is better than the ones without the quality mark. In a second study with decision aids for prostate cancer, bladder cancer and urolithiasis (n =9), we found the same results or even worse. It turns out to be not a specific functional urology decision aid problem.