Illiteracy in rheumatoid arthritis patients as determined by the Rapid Estimate of Adult Literacy in Medicine (REALM) score

M.-M. Gordon, R. Hampson, H. A. Capell and R. Madhok

Centre for Rheumatic Diseases, Glasgow Royal Infirmary, Glasgow, UK


    Abstract
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 References
 
Objectives. To determine the prevalence of illiteracy in a cohort of rheumatoid arthritis (RA) patients and the impact of illiteracy on disease severity and function.

Methods. We performed a prospective cross-sectional study with case record review of 127 consecutive patients with RA attending one centre. All patients completed the Rapid Estimate of Adult Literacy in Medicine (REALM) screening test. This 66-word recognition test provides an estimate of reading level in less than 3 min. Demographic data were collected by interview and case record review. Function was assessed with the Health Assessment Questionnaire (HAQ) and depression with the Hospital Anxiety and Depression (HAD) scale, both sent prior to clinic attendance. Social deprivation was assessed with the Carstairs index.

Results. Four patients refused to participate. Of these, three stated they were unable to read. Ninety-seven women and 26 men agreed to be interviewed. All but two were Caucasian. Median age was 56 yr (range 19–77 yr) and median disease duration was 10 yr (range 1–60 yr). Median number of previous disease-modifying anti-rheumatic drugs (DMARDs) was two. Eighteen (15%) patients were functionally illiterate, with a REALM score of less than 60. Sex, age, disease duration and numbers of joint replacements and previous DMARDs were not influenced by illiteracy. Illiteracy led to more anxiety (P=0.011), but did not affect HAQ score (P>0.5). Illiteracy was more common in the deprived (P=0.0064). Illiterate patients had three times more hospital visits compared with age- and sex-matched RA controls over the previous 12 months.

Conclusions. One in six of our patient population are illiterate and would struggle to cope with patient education materials and prescription labels. These patients had significantly more hospital visits but equal function, suggesting that additional resources be directed towards these individuals. The REALM test is quick and easy to administer and allows us to identify patients who may require more appropriate literature.


    Introduction
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 References
 
Rheumatoid arthritis (RA) has a major impact on well-being and quality of life. Management is multidisciplinary and incorporates drug therapy, surgery, physical and occupational therapy as well as patient education. Education improves knowledge, reduces pain and disability and improves overall quality of life [1]. The management of a chronic disease like RA requires effective communication to deliver information and health-care. The majority of patients are managed on an out-patient basis and the allocated clinic time may be insufficient for the patient to be given and retain important information about their illness and its management. We therefore rely on written materials, including patient information booklets, drug information sheets, written instructions and consent forms to reinforce verbal information.

The skill of reading is one that most people in Western society acquire early in life. Illiteracy results in poorer health outcomes and greater use of health-care resources, with more frequent out-patient attendances and more hospital admissions [2]. A low level of literacy is an acknowledged but under-recognized problem in health-care. Twenty-one per cent of American adults are reported to be functionally illiterate and a further 27% have marginal literacy skills [3]. The issue of illiteracy is a sensitive area. Patients are often embarrassed and may take measures to disguise difficulties. Direct testing is the most reliable way of identifying patients with limited reading ability. However, many tests are too long, cumbersome or not applicable to medical environments. On this basis, the Rapid Estimate of Adult Literacy in Medicine (REALM) was developed [4]. This is a screening instrument of 66 routinely used lay medical terms. The words are arranged in three columns of 22 words each, on a standardized purple laminated A4-sized card, with the words enlarged and in black ink. The words are evenly spaced and presented in order of increasing difficulty and numbers of syllables, ranging from ‘fat’, ‘flu’, ‘pill’ through ‘anaemia’ and ‘jaundice’ to ‘occupation’, ‘medication’ and ‘inflammatory’. The test requires little formal training in its use and, although there is no time limit, most people with a normal level of literacy will complete the test in 2–3 min. The patient is asked to read the words aloud and scores one point for every word read correctly and zero if the word is mispronounced or not attempted. This gives a raw score from a maximum possible score of 66 and this translates into a US high-school grade equivalent as a surrogate for reading age (Table 1Go). It gives an estimate of literacy and, whilst not implying comprehension or interpretation, can alert the clinician to potential difficulties.


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TABLE 1.  US high school grade equivalents of REALM raw scores

 
We used the REALM test to determine the prevalence of illiteracy in RA patients attending a rheumatology clinic and to identify health consequences.


    Patients and methods
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 References
 
The Centre for Rheumatic Diseases is a tertiary referral centre for rheumatic diseases which also serves as a district hospital for the eastern part of Glasgow, a deprived area as measured by the Carstairs index. There is also a large out-patient population. All patients attending four consecutive clinics for RA patients were invited to take part. All patients gave verbal consent for participation in the study after a prepared consent form had been read to them. One observer (MMG) performed the interviews. Patients were asked to complete the REALM questionnaire.

Patient demographic data were collected by interview and case record review. Function was assessed with the Health Assessment Questionnaire (HAQ) and depression with the Hospital Anxiety and Depression (HAD) questionnaire. HAQ and HAD questionnaires were sent to the patient in advance of their clinic visit, thus preventing undue delays, bias or potential further embarrassment. Deprivation was assessed with the Carstairs index, which is a composite score derived from the postcode and is based on overcrowding, male unemployment, social class and car ownership [5]. It categorizes patients into groups ranging from the most affluent (group 1; 11% have no car, 6% are unemployed, 2% live in overcrowded conditions and 2% are in social class 4 or 5) to the most deprived (group 7; 72% have no car, 35% are unemployed, 17% overcrowded and 35% in social class 4 or 5).


    Results
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 References
 
One hundred and twenty-seven patients were asked to take part and complete the REALM questionnaire. Four refused; three of these stated they were unable to read.

Ninety-seven women and 26 men agreed to be interviewed. All but two were Caucasian (one was of Asian and one of Afro-Caribbean origin). Patient characteristics are shown in Table 2Go. The median patient age was 56 yr (range 19–77 yr). All patients had RA and 79% were seropositive for rheumatoid factor. Median disease duration was 10 yr (range 1–60 yr). They had received a median of two previous disease-modifying anti-rheumatic drugs (DMARDs). Most had not required joint replacement surgery, but some had had up to six major joints replaced. The entire group was moderately disabled, with a median HAQ of 1.875 (range 0–3). The West of Scotland is a deprived area, and overall 43% of the patients belonged to Carstairs group 6 or 7 compared with only 24% in the more affluent groups (groups 1, 2 or 3).


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TABLE 2.  Patient demographics

 
REALM score
Eighteen (15%) patients had a REALM score of less than 60, indicating functional illiteracy and the need for low-literacy materials. Twelve per cent had a reading level equivalent to US seventh or eighth grade (age 12–13 yr), but 1% were unable to read at the level of the third grade (age 8–9 yr). With the three patients who declared they were unable to read and did not complete the REALM questionnaire, this gives an overall prevalence of functional illiteracy of one in six of our cohort.

Effects of illiteracy
Sex, age, disease duration, joint replacement and number of previous DMARDs were not different between the literate and illiterate groups (Table 3Go). The HAQ score was not different between groups (median 1.875 in the literate group and 2.0 in the illiterate group; P>0.5). Illiteracy was associated with anxiety and, to a lesser extent, depression on the HAD score (P=0.011) (Table 4Go).


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TABLE 3.  Effects of illiteracy [median (range)]

 

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TABLE 4.  Illiteracy is associated with increased anxiety and depression

 
Seventy-eight per cent of patients with low literacy were in the deprived Carstairs groups 6 and 7 and none was in the more affluent groups (groups 1, 2, 3) (Table 5Go). In our cohort, fewer in the illiterate group were in a stable relationship compared with the literate group (44 vs 63%) (P=0.354). Ten (56%) of the illiterate group were unemployed compared with 30 (29%) of the literate group (Table 6Go). One patient with a REALM score equivalent to fourth to sixth grade (age 9–12 yr) was in professional employment.


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TABLE 5.  The association between illiteracy and social deprivation

 

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TABLE 6.  Differences in employment rates between groups

 
When compared with a sample from the (RA) literate group matched for age, sex and disease duration, the illiterate group showed significant differences in number of hospital visits in a 1 yr period (Table 7Go). Illiterate patients attended three times as many out-patient clinics as the literate group (median 6 vs 2 per yr) and attended twice as many different departments (median 2 vs 1). There were no differences in in-patient episodes.


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TABLE 7.  Illiteracy is associated with an increase in the number of out-patient clinics attended each year and the number of different departments visited [median (range)]

 


    Discussion
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 References
 
We show that illiteracy is a common problem in our patient population, with one in six patients unable to read. These patients were more anxious but not depressed. Illiteracy did not have an effect on the extent of disability caused by RA and did not influence the number of DMARDs used or the number of major joint arthroplasties undertaken. This more favourable outcome may have been due to more frequent hospital attendances in these patients in order to achieve the same therapeutic goal. Extrapolated to our whole RA out-patient clinic population, 6800 extra visits might have been avoided if illiteracy had been assessed and the consequences addressed.

Illiteracy is an under-recognized problem in society. It affects both sexes and all ages. It is more prevalent among the socially deprived. In the UK, literacy standards have changed very little since standards were set in 1948. A recent survey commissioned by the Scottish Executive estimated that 800 000 people in Scotland would have difficulties with reading and numeracy skills. The difficulties are international. The largest population study was carried out in the USA in 1992 for the National Adult Literacy Study (NALS), in which 26 000 adult Americans were interviewed and their reading ability assessed [6]. One third were found to be functionally illiterate; if this result were extrapolated to the USA as a whole, 40 million Americans would be expected to be unable to read or write and a further 45 million would have marginal reading skills. People who were over the age of 65 yr, white, learning English as a second language and who had fewer years of education were more likely to be illiterate.

The frequency of illiteracy in our cohort did not differ from that in a USA-based hospital cohort of RA patients [7]. Unlike our study, Pincus et al. [7] reported worse function in illiterate patients, although the mean HAQ was 1.7 in their illiterate group and 1.5 in their literate cohort. The reason for lower values in the US patients may be selection bias in our population because the clinic which the patients were attending has over-representation of those with severe disease. To our knowledge, there have been no similar surveys in the UK in RA patients or in those with other chronic diseases. (We searched Medline, Cinhal, Firstsearch and Cambridge Scientific Abstracts using the terms ‘literacy’, ‘illiteracy’, ‘reading standards’, ‘rheumatoid arthritis’, ‘arthritis’, ‘diabetes’ and ‘asthma’.)

We chose the REALM test because of its ease of administration and because prior studies had confirmed test validity [4]. The REALM test was originally developed in 1989 and revised in 1995. It was originally validated in 207 primary care patients in university clinics as the normative sample and the revised version was compared with additional literacy tests in 203 patients in four different clinics. Each of these 203 patients was asked to complete the Slosson Oral Reading Test—Revised (SORT-R) [8], the reading sections of the Peabody Individual Achievement Test—Revised (PIAT-R) [9], and the Wide Range Achievement Test—Revised (WRAT-R) [10]. The results were correlated with the REALM, with a correlation coefficient between 0.88 and 0.97.

REALM results correlate with other reading tests but provide no information on comprehension or interpretation. No validation of the REALM has been undertaken in the UK. However, because it was derived initially in English and there was obvious face validity, we accepted its potential utility. There are alternative methods to test literacy. Direct questioning provides an overestimate of reading ability [2]. The WRAT-R is a word recognition test which assesses reading ability in less than 5 min but is not specific to medical settings [10]. The Test of Functional Health Literacy in Adults (TOFHLA) assesses reading, comprehension and numerical skills by using 50 words and 17 numeracy tests, but takes 20 min or longer to administer [11].

Illiteracy has recognized consequences for the health of the individual and health-care resources. Compliance with medication is poor, as patients are unable to read or understand prescription labels and drug information sheets [12, 13]. Attendance at screening clinics is poor and hospital admission rates and out-patient attendances are higher [14]. Furthermore, in RA and other chronic diseases, a low level of formal education is associated with increased morbidity and mortality [1517]. Education level in itself is not a reliable indicator of reading ability [18]. Educational achievement, however, is a measure of other factors that influence health outcomes, of which social deprivation is one. For this reason, we did not record years of education, and instead used the Carstairs index as an indicator of socio-economic status. The factors leading to socio-economic disadvantage are multifactorial, but include employment status, which in itself is dependent on the educational level of the patient [19]. In this study, social deprivation was more frequent in those who were illiterate. However, we did not investigate whether identifiable causes of learning difficulties, such as dyslexia, rather than other facets of socio-economic disadvantage, were contributory factors.

The difficulty with illiteracy and health-care lies in the detection of the problem. Many patients with low literacy take measures to conceal their inability to read. Direct questioning is of no value and reliable screening tests must be implemented. Whilst screening an entire clinic is of questionable value and may not be practical, selective screening may allow identification of patients with particular problems (e.g. the patient who is frequently a non-attender, who refuses to read in the clinic room, often using excuses such as forgetting their reading glasses; patients who fail to comply with medication or who develop side-effects due to inability to adhere to instructions should also raise suspicion). The REALM questionnaire, as used in this study, is quick, easy to administer and requires no formal training in its use. Heightened awareness of the scale of the problem will alert clinicians to the possibility of illiteracy. Identifying patients with low literacy may help provide more appropriate patient education material and improve patient care.

The results of this study show that illiteracy is a problem in our population; review of the records did not show that the issue had been identified. The problem is not likely to be confined to patients with RA, and therefore has wider implications for all doctors and other health-care providers. Such patients can be identified using a practical and simple tool. To reduce the anxiety of illiterate patients and their need for more frequent hospital visits, alternative strategies of communication and health-care provision are required.


    Acknowledgments
 
We are grateful to Liz Garrity and the library staff at the West Glasgow Hospitals libraries for their thorough and comprehensive literature search.


    Notes
 
Correspondence to: M.-M. Gordon, North Glasgow Trust, Gartnavel General Hospital, 1053 Great Western Road, Glasgow G12 0YN, UK. Back


    References
 Top
 Abstract
 Introduction
 Patients and methods
 Results
 Discussion
 References
 

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Submitted 27 September 2001; Accepted 7 January 2002