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Information and readability issues for psychiatric patients: e-learning for users

Published online by Cambridge University Press:  02 January 2018

Ernest Gralton*
Affiliation:
St Andrew's Healthcare, Northampton, UK
Marilyn Sher
Affiliation:
St Andrew's Healthcare, Northampton, UK
Coro Drew Lopez
Affiliation:
St Andrew's Healthcare, Northampton, UK
*
Ernest Gralton (egralton@standrew.co.uk)
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Abstract

Aims and method

The level of reading ability required to understand written information about key mental health issues designed for service users is examined. Information was taken from four reputable internet sources and analysed for readability. The relevant literature in relation to psychiatric patients and literacy is reviewed and potential solutions are proposed.

Results

A considerable proportion of the available information has a reading age at or above 14 years. Some organisations appear better than others in providing information at a more appropriate level of reading ability.

Clinical implications

Written information aimed at users of psychiatric services may not take into account that they are more likely to have impaired reading ability, even though they might not have an identified intellectual disability. Professionals who develop written materials can use tools in word processing software to assist with the appropriate development of these materials. Information technology could in the future provide information directed at users of psychiatric services that does not rely so heavily on written material.

Type
Original Papers
Creative Commons
Creative Common License - CCCreative Common License - BY
This is an Open Access article, distributed under the terms of the Creative Commons Attribution (CC-BY) license (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted re-use, distribution, and reproduction in any medium, provided the original work is properly cited.
Copyright
Copyright © Royal College of Psychiatrists, 2010

There is a medico-legal imperative to provide patients with relevant information so that they can make informed choices and be aware of all the risks and benefits of treatment. Reference Vaitheswaran, MacManus and Hamilton1 It has long been observed that improved patient comprehension generally increases adherence to treatment. Reference Hulka, Cassel, Kupper and Burdette2 However, healthcare organisations and individual healthcare professionals often assume that the majority of their patients have reasonable abilities to read and assimilate information that is important to them.

People with limited literacy have less knowledge of disease management and health-promoting behaviours, report poorer health status and are less likely to use preventative services than those with average or above average literacy skills. Reference Nielsen-Bohlman, Panzer and Kindig3 Poor reading skills negatively affect a person's ability to obtain cost-effective care and may result in inappropriate in-patient and out-patient treatment. Reference Grace and Christensen4,Reference Miles and Davis5 People with poor reading skills also have significantly higher healthcare costs than more literate patients. Reference Weiss and Palmer6

Patient comprehension is a prerequisite to adherence to medical instruction. Despite that, a variety of written materials (including questionnaires, surveys, information about legal rights or educational materials) can be given to patients with little regard to their ability to comprehend the information they contain. Reference Osborne7 This is not an issue exclusive to healthcare. The Plain English Campaign (www.plainenglish.co.uk) has been lobbying and providing standards for improved access to clear and accessible information for the UK public for over 30 years.

The National Health Service (NHS) Toolkit (www.nhsidentity.nhs.uk/tools-and-resources/patient-information) gives guidelines about the development of written information for patients, stressing the avoidance of jargon and acronyms and reminding that a significant number of patients may have literacy problems.

Written information for patients comes from a variety of sources. For most in-patients in psychiatric settings it is supplied in traditional paper format but this may change as paper records gradually give way to electronic media.

Some authors distinguish between literacy, which is the ability to read and understand language, and ‘health literacy’, which is the ability to read, understand and act on health information. Reference Andrus and Roth8 Health literacy has also been defined by the US Department of Health and Human Services 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. Reference Paasche-Orlow, Parker, Gazmararian and Neilsen-Bohlman9

For out-patients seeking health information (including mental health information) the source is increasingly the internet, although it is still predominantly in text form and relies on a person's ability to read and comprehend the written word. The amount of information potentially available is significant. Using the search words ‘mental health information leaflets’ on Google produced approximately 950 000 hits.

New paradigms around the transfer of health information have been developed, primarily the concepts of ‘health informatics’ and ‘e-health literacy’. Health informatics was originally designed to serve the needs of healthcare professionals, but increasingly is reaching consumers and patients via computers and telecommunication systems. Reference Eysenbach10 It appears that obtaining healthcare information from these new sources will require some new skills in addition to reading.

E-health literacy is defined as the ability to use information and communication technology (especially the internet) to improve or enable health and healthcare, Reference Eng11 or the ability to seek, find, understand and appraise health information from electronic sources and apply the knowledge gained to address or solve a health problem. Reference Norman and Skinner12 It is clear that this is going to be an increasingly dominant way of obtaining health information in the 21st century, including information about mental health disorders and treatment.

There is one major longitudinal research study comparing international literacy achievement by country, the Programme for International Student Assessment (PISA) by the Organisation for Economic Co-operation and Development (OECD). The study results are available for 15-year-olds at the National Literacy Trust website (www.pisa.oecd.org). The UK performs above the OECD average for scientific literacy.

In the USA, the National Adult Literacy Survey was undertaken in 1992 and profiled the functional English literacy skills of over 26 000 adults. It found that over half had limited or low literacy skills Reference Paasche-Orlow, Parker, Gazmararian and Neilsen-Bohlman9 and it was estimated that up to 20% of the American population were functionally illiterate, that is they were unable to read material above a US 5th grade level (10–11 years old). Reference Zahnd, Scaife and Francis13

The UK statistics are available on the Department for Business, Innovation and Skills website (www.dfes.gov.uk/readwriteplus_skillsforlifesurvey). They show that in 2003 in England about 16% of the population had a literacy level at or below an expected attainment for an average 11-year-old and the proportion of the population with low attainment was larger in regions such as Wales (about 25%).

Reported educational levels are not necessarily a good guide to reading performance, with some studies showing over half of people tested had a reading age median of 5 years below their reported educational level. Reference Baker, Parker, Williams, Pitkin, Parikh and Coates14

Many psychiatric conditions impair brain function, so issues around the comprehension of written material are even more relevant to the practice of mental healthcare. Historically, around half of young adult patients admitted to in-patient psychiatric facilities were found to be functionally illiterate, Reference Feitel and Sano15 and a similar level was found in long-stay adult patients. Reference Coles, Roth and Pollack16,Reference Berg and Hammitt17 In community settings about three-quarters of patients at a walk-in psychiatric clinic had a reading age below the 8th grade (13 years old). Reference Christensen and Grace18

Poor reading skills are also associated with a range of psychiatric disorders in young people. Reference Goldston, Walsh, Mayfield, Reboussin, Sergeant and Erkanali19 For example, patients with schizophrenia not only achieve fewer years of education but their illness may cause a decline in standardised reading performance. Reference Fuller, Nopoulos, Arndt, O'Leary, Beng-Choon and Andreason20 Poor levels of literacy are common among other populations who have high levels of psychiatric morbidity, including juvenile offenders. Reference Snowling, Adams, Bowyer-Crane and Tobin21

Therefore a significant proportion of psychiatric patients (outside those formally recognised as having intellectual disabilities) are likely to have significant literacy problems. The concept of specific reading impairment has been accepted since the 1970s. Reference Rutter and Yule22 Most patients with literacy problems are actually of average IQ and they try and conceal their literacy deficits using other cognitive abilities. Reference Roter, Rude and Comings23

Doctors have been shown to significantly overestimate the literacy ability of their patients. Reference Bass, Wilson, Griffith and Barnett24 Studies in physical healthcare have shown that there is commonly a 5- to 7-year gap between the average reading age and the materials that are produced for patient education. Reference Davis, Crouch, Wills, Miller and Abdehou25

Previous studies of psychoeducational materials designed for psychiatric patients have shown that high levels of reading ability are required in order to comprehend these and this is even more of an issue in linguistically diverse populations where English may not be the patient's first language. Reference Snyman26 The consent forms for psychiatric patients partaking in research have also shown to have a significantly higher readability level than the reading ability of participants. Reference Christopher, Foti, Roy-Bujnowski and Appelbaum27

Patient information leaflets are promoted to psychiatrists to help communicate information to patients about psychotropic medication, although it is recognised that modified leaflets may need to be used for patients who are recognised as having lower levels of understanding. Reference Vaitheswaran, MacManus and Hamilton1 Many patients are reluctant to admit they have literacy problems due to feelings of shame and many recount serious medication errors as a result of poor reading ability. Reference Baker, Parker, Williams, Pitkin, Parikh and Coates14

Some studies recommend that all patient education materials should generally be written at a 6th-grade (12 years old) or lower reading level. Reference Safeer and Keenan28

Readability is defined by the Merriam-Webster Dictionary both as ‘able to be read easily’ and ‘interesting to read’. Whereas the latter part of the definition is subjective and difficult to assess, the former may be measured by the Flesch–Kincaid readability tests. Reference Flesch29 These tests are designed to indicate level of comprehension difficulty for contemporary written English. They were originally developed by Flesch in the early 1940s and are now widely accepted. There are two tests, the Flesch Reading Ease and the Flesch–Kincaid Grade Level. Both use measures of word and sentence length but they have different weighting factors and may not correlate exactly. They can be routinely obtained for documents of more than 100 words in Microsoft Word 2003 as part of the spell check function.

Method

A selection of information leaflets about mental health issues that were freely available to the public and to mental health services were downloaded from four sources: the Department of Health (www.dh.gov.uk), NHS Direct (www.nhsdirect.nhs.uk), the Royal College of Psychiatrists (www.rcpsych.ac.uk) and Mind (www.mind.org.uk). These were chosen from the first page of the Google search results for ‘mental health information leaflets’. The information was converted into Microsoft Word 2003 documents and then subjected to analysis using the Flesch Reading Ease and the Flesch–Kincaid Grade Level tests. There were 34 patient information leaflets from three sources and 15 leaflets devoted to explaining the Mental Health Act from the Department of Health.

Results

There was considerable variation in the range of Flesch–Kincaid Grade Level in information about mental health issues designed for users from three sources: 10 years when material designed for service users with intellectual disability was included and 5.7 years when this material was excluded. The average Flesch–Kincaid Grade Level for NHS Direct was 10.5 and for Mind it was 10.2; both equate to a reading age of 15–16 years. For the Royal College of Psychiatrists, average Flesch–Kincaid grade was 7.6 and increased slightly to 8 (reading age 12–13 years) when the two items developed specifically for service users with an intellectual disability were removed (Table 1). The average Flesch–Kincaid Grade Level for a selection of leaflets related to the Mental Health Act available from the Department of Health was 8.4, which equates to a reading age of about 14 years (Table 2).

Table 1 Clinical patient information leaflets

Patient leaflet title Flesch Reading Ease scorea Flesch–Kincaid Grade Level scorea,b Chronological reading age, years
Royal College of Psychiatrists
   Your guide to taking medicine for behaviour problems 82.3 2.8 7–8
   Cognitive–behavioural therapy 71.3 6.8 11–12
   Tiredness 71.5 6.9 11–12
   Sleep problems 70.1 7.1 12–13
   Alcohol our favourite drug 69.6 7.7 12–13
   PTSD 51.6 7.9 12–13
   Depression 65.8 7.9 12–13
   Antidepressants 59.1 8.7 13–14
   Bipolar disorder 58.8 8.7 13–14
   Bereavement 65.2 8.8 13–14
   Depression in people with learning disabilities 56.8 9.3 14–15
   Cannabis 56.6 9.5 14–15
Mind
   Understanding bereavement 64.4 8.1 13–14
   How to cope with sleep problems 60.9 8.6 13–14
   Understanding eating distress 56.4 9.2 14–15
   Understanding depression 56.6 9.3 14–15
   Understanding addiction and dependency 53.3 9.6 14–15
   Understanding ADHD 56.9 9.9 14–15
   Understanding bipolar disorder 49.4 10.6 15–16
   Understanding psychotic experiences 48 11 16–17
   Understanding PTSD 48.5 11.3 16–17
   Making sense of antidepressants 39.1 11.9 16–17
   Cannabis and mental health 41.5 12.5 17–18
NHS Direct
   Antidepressants 51.1 8.7 13–14
   Insomnia 57.9 8.8 13–14
   Drug addiction 56.7 9.2 14–15
   Eating disorders 49.4 10.4 15–16
   Bipolar disorder 50.5 10.6 15–16
   Depression 50.6 10.7 15–16
   ADHD 49.7 11.2 16–17
   Alcohol 49.9 11.3 16–17
   What is psychosis 44 11.4 16–17
   Addiction 48 11.5 16–17
   PTSD 43.3 11.5 16–17

Table 2 Department of Health legal information for patients

Patient leaflet title Flesch Reading Ease scorea Flesch–Kincaid Grade Level scorea,b Chronological reading age, years
Admission to hospital without restrictions 72.3 7.2 12–13
Nurses' power to detain Section 5(4) 74.7 7.3 12–13
Admission to hospital with restrictions 71.1 7.4 12–13
Interim Hospital Order 71.9 7.4 12–13
Admission under Section 136 72.2 7.5 12–13
Admission to hospital for assessment Section 2 71.1 7.5 12–13
Admission to hospital for treatment Section 3 69.3 8 13–14
Guardianship 64.2 8.4 14
Revocation of a CTO for treatment under Part 3 66.2 8.6 14
Recall for CTO 65.3 8.9 14–15
ECT for patients 64.5 9.1 14–15
Your nearest relative under the MHA 63.3 9.3 14–15
Your right to complain to the MHAC 61.1 9.7 14–15
Supervised community treatment for Part 3 58.8 10 15–16
Supervised community treatment for Part 2 57.6 10.2 15–16

Discussion

Patient literacy (and the emerging concept of e-health literacy) should be the concern of every healthcare organisation and healthcare professional, not just those working with patients with identified intellectual disabilities.

A number of patient information leaflets designed for users of psychiatric services and available on the internet from reputable sources require a reading age that is above 14 years. This would make them difficult to understand by a large proportion of service users without significant assistance.

About 10% of internet users already report using it to find information about mental health issues. Reference Powell and Clarke30 However, the information is variable, with non-sponsored, governmental, professional and charitable sites being of superior quality to other sources. Reference Ferreira-Lay and Miller31 Information available on the internet about some psychiatric conditions such as schizophrenia still has a reading age that is inappropriately high. Reference Kalk and Pothier32 However, there may be some subjects (e.g. involving complex psychopharmacology) where it is difficult to communicate information in a way that is coherent, using text-based information, with a reading age below 12–14 years.

Although there has been long-standing concern about the potential adverse influence of the internet on mental health, including suicide, Reference Thompson33 Holloway states that the opportunities offered by legitimate health informatics outweigh the disadvantages. Reference Holloway34 Innovative new services have been developed on the advantages and flexibility of this emerging technology. Reference Marks35,Reference Rigby and Ashman36 The Royal College of Psychiatrists has been at the forefront of using information technology for educational purposes for its members. Reference Agrawal37

Some development of patient information for service users with intellectual disabilities who take medication has been undertaken in the UK that incorporates pictures rather than traditional symbols, as this has been shown to be more acceptable to such users. Reference Strydom, Forster, Wilkie, Edwards and Hall38 Alternatives to written materials have been suggested as potential solutions to problems with literacy in healthcare, including audiovisual material. Reference Osborne39 These options continue to increase with new technologies. Multimedia e-learning for patients might be one potential solution to limited reading skills in those users with appropriate e-health literacy skills. This approach has been associated with very high levels of user satisfaction and an improvement in understanding of some concepts in cancer care. Reference Holubar, Hassinger, Dozois, Wolff, Kehoe and Cima40

Mental health organisations have a responsibility to provide patient information that is accessible and understandable by the vast majority of patients in their care. Tools are available to healthcare organisations and professionals to comprehensively assess the written information that they provide to patients. New technologies may be utilised in the future to improve the communication of key information to patients, including those with limited literacy.

Footnotes

Declaration of interest

None.

References

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Figure 0

Table 1 Clinical patient information leaflets

Figure 1

Table 2 Department of Health legal information for patients

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