Growing Awareness of the Importance of Health Literacy in Individuals with COPD

Abstract

Good communication will impact clinical practice by assisting patients in understanding health information as well as medical recommendations. Health literacy is important for communication between healthcare professionals and patients with Chronic Obstructive Lung Disease (COPD). In this article we review the concepts, definitions and measurement tools used to evaluate health literacy and recommend ways in which this information may be integrated into clinical practice. Increased awareness of health literacy will assist clinicians to improve patients’ knowledge of their disease and adherence to healthcare recommendations.

Keywords :

• Health literacy
• COPD
• patient-provider communication.

Introduction

Health literacy in COPD

Chronic Obstructive Pulmonary Disease (COPD) is globally present and is acknowledged to have a substantial impact on mortality, morbidity and healthcare resource utilization (1,2). In keeping with other chronic conditions such as cardiovascular and metabolic diseases, patients frequently have multiple co-morbidities (3) requiring complex treatment regimens and multiple healthcare consultations. Whereas most COPD management occurs in the primary care community, the value of specialist care, has been acknowledged by professional societies in both North America and Europe (4,5). COPD management requires good communication of health information between healthcare professionals and patients.

For example, in both primary and specialist care, patient education to enhance fuller participation in their care is important in enabling patients to correctly self-administer medications, maintain good healthcare habits and encourage a timely response to acute exacerbations of COPD (AECOPD). In a study of 191 COPD patients across 7 outpatient clinics, those taught education self-management were hospitalized less frequently, made fewer visits to the emergency department and had fewer unscheduled visits to their primary care physician than did control subjects who received usual care (6). However, as a result of diminished health literacy and the overuse of medical jargon, many patients with COPD are unable to understand complex verbal information or to use written information effectively, to make appropriate health decisions (7,8,9,10).

Individuals with chronic conditions and diminished health literacy have less knowledge of their underlying condition, worse symptom management and lower health status (11,12) compared with those who have adequate health literacy. They are also more likely to have lower adherence to medical recommendations and increased hospitalization. The relationship between health literacy and knowledge of chronic disease has been consistent among patients with asthma, diabetes, heart failure and hypertension (11,13). In a study by Williams and colleagues (14) evaluating the impact of functional health literacy among 516 patients with chronic disease, knowledge scores correlated with health literacy (p < 0.01). In those with hypertension, 92% of those with adequate health literacy but only 55% of those with poor literacy recognized the readings for high blood pressure. And, in those with diabetes, 94% of patients with adequate health literacy and only 50% of those with poor literacy recognized the symptoms of hypoglycemia. In a subsequent study (15), the same group noted that among 483 patients with asthma, only 27% could read at a high-school level and that in a multivariate analysis, patient reading level was the strongest predictor of asthma knowledge.

In patients with COPD, diminished health literacy may be compounded by impairments in abstract reasoning and memory associated with hypoxemia (16) as well as by secondary impairments of depression and anxiety, which influence learning, comprehension and decision-making ability (17). Whereas information regarding health literacy in patients with asthma and COPD is very limited, inadequate literacy has been identified as a barrier to asthma knowledge and self-care (13) and both groups appear to benefit from enhanced education for medication adherence. Given that lower health literacy is more prevalent among the older population (11), those with COPD may be especially at risk.

Impact of reduced health literacy

The potential effects associated with diminished health literacy are summarized in Table 1. Inevitably, the lack of access to written information will result in patients having less knowledge of their disease. They may not be able to locate or understand medical information and feelings of shame and embarrassment may inhibit those with poor reading and comprehension skills from identifying themselves as low literate (18,19,20). In a study by Parikh and colleagues in which 202 indigent African-American patients were interviewed, 43% had marginal functional health literacy. Of these, 91% did not disclose it to their supervisors, 86% to their co-workers, 67% to their spouses and more than 50% to their friends and other relatives (19).

Table 1.  Effects of health literacy

Diminished Health Literacy	Adequate Health Literacy
Less knowledge about the illness and its management (9,10)	Increased awareness of factors related to health (70)
Inability to locate information related to disease-prevention (18,19,20)	More advocacy and social action (78)
Decreased ability to understand medical information (21)	Increased disease prevention (82,83,84)
Higher likelihood of not asking for clarification because of feelings of shame and embarrassment (18,19)	Enhanced ability to access health-related information and utilize services (66,68)
Decreased ability for self-management (6)	Clearer communication with healthcare providers (22,22,24,81)
Less likely to take part in health decision-making (70,71)	Greater probability of compliance with practitioners’ recommendations (69,70)
Higher likelihood of medication errors and misreading prescription drug labels (13)	Better disease management (6,70,71)
Reduced rate of compliance with treatment recommendations (22,24)	Improved health status (46)
Higher likelihood of hospitalization (6)	Reduced probability of hospitalization (6)
Increased burden on the healthcare system (81,87,88)	Reduced health disparities and barriers to health promotion (90)
	Reduced burden on the healthcare system (6,81,87,88)

This reduction in knowledge coupled with a decreased ability to access information impairs adherence with healthcare recommendations. The language employed by low literate patients also contributes to poor communication between them and their healthcare professionals (21), a situation which is aggravated by providers who use language full of medical jargon or who are too impatient to listen. The resulting disconnection between the practitioners’ recollections of recommendations provided to the patient and the patients’ recollection of the same conversation (22,24), lessens the chance of adherence to treatment and increases the likelihood of medication errors.

Health literacy

The term “Health Literacy” (HL) was introduced in 1974 by Scott K. Simonds (25), who considered it to be an asset that would promote self-management, communication and adherence to medical recommendations. Reduced HL was considered to be a detriment to health (26). The U.S. National Adult Literacy Survey (27) described HL as a combination of distinct skill sets that included the ability to read and understand texts as well as the ability to use and locate document and numerical information (prose, document and quantitative literacy, respectively). These skills vary from simple reading to being able to critically analyze information for use in health-related situations. They are influenced by the patient's background knowledge of science and public health issues as well as by their cultural beliefs (28,29).

In 1998, health literacy (HL) was defined by the World Health Organization (WHO) as the “cognitive and social skills that determine the motivation and ability of individuals to access understand and use information to promote good health” (30). In COPD as in many chronic conditions, these interconnected skills influence the patients’ abilities to read and act upon written health information, to communicate their history to their healthcare professionals (HCP) and in turn to understand health recommendations (31).

They are also necessary for understanding how to access healthcare, make appointments, sign consent forms, complete insurance forms and identify sources of insurance or payment for medical as well as drug costs. HL is especially important among those most at risk such as immigrants, the unemployed and aging populations (32,33) with chronic conditions, such as COPD (34,35), asthma (36,37) and diabetes (38). Important associations have been described between HL and general health status, resource utilization, hospitalization and access to care (39,40,41,42,43,44,45,46). The impact of diminished HL is likely to become more apparent given the changing demographics associated with immigration and multiculturalism (47).

Reductions in health literacy may not be surprising, considering the reduction in general literacy, i.e., the basic ability to read and write. Recent Canadian (2008) and U.S. (2010) surveys reported that 50–60% of their populations lacked sufficient literacy skills to read and understand basic health-related information (48,49,50,51,52). The Canadian survey also noted that those with inadequate health literacy were 2.5 times more likely to be in poor health compared with more literate persons (50,51,52). Similar data has been reported from the United Kingdom, where half of the adults aged between 16 to 65 years tested demonstrated literacy or numeracy skills in the lower range (53).

Tools available to measure HL in adults with chronic disease

The following 5 questionnaires have all been used in the clinical setting. They vary in complexity, time for administration and ease of scoring.

1. Rapid Estimate of Adult Literacy in Medicine—REALM

   The REALM is an easy, quick to administer and quick to score test that has been used in a variety of healthcare settings (54). It provides an indication of reading ability. It is comprised of 66 medical words in 3 columns, which increase in complexity and reading difficulty. The words reach a grade 9 level. They are read aloud and reading ability is measured by the number of words correctly pronounced. Raw score is the total number of correct words. Scores are interpreted as follows: 0–18 (Grade 3 and below); 19–44 (Grades 4 to 6); 45–60 (Grades 7 and 8); and, 61–66 (High School level). This 5-minute test is scored on-site by the interviewer.

2. Test of Functional Health Literacy in Adults (TOFHLA)

   The TOFHLA assesses reading, comprehension and numeracy (55). It takes 20 minutes to administer and uses material from healthcare settings—such as patient education materials, application forms, prescription labels and consent forms. Numeracy items assess the ability to follow directions for taking medications, monitoring blood glucose levels, obtaining financial assistance and keeping clinical appointments. The TOFHLA has two parts. The first component provides the patients with medical information and requires them to answer questions that test their understanding of it. The second component requires patients to fill in the blanks in the statement, using words from a multiple choice list. Every fifth word in each statement is deleted. Each correct answer receives a positive value. No negative value is given to incorrect responses. Test scores are interpreted as follows: inadequate literacy: 0 to 59, marginal literacy: 60 to 74; adequate literacy: 75 to100. The S-TOFHLA is a shorter version which takes 7 to12 minutes and measures only functional health literacy (56).

3. The Newest Vital Sign (NVS)

   The NVS is a quick 3-minute assessment of literacy which has been used in primary care (57). It employs 6 questions to establish the patients’ understanding of a nutrition label on an ice cream container, with responses scored as correct or incorrect. It scores literacy as low (0 to 4 correct) or unlikely to be low (5 to 6 correct). The test's internal consistency and criterion validity were satisfactory when compared with the full version of the TOFHLA (57). Although the NVS is a quick and effective, it is highly specific and may overestimate those with low literacy levels (58).

4. The Single-Item Literacy Screener (SILS)

   The SILS is based on the shorter version of the TOFHLA and is used to assess understanding of printed information (59). The patient is asked one question: “How often do you need to have someone help you when you read instructions, pamphlets, or other written material from your doctor or pharmacy?” The response is scored from 1 (never) to 5 (always) with scores > 2 suggesting difficulty with HL. The test is a needs assessment tool, rather than an objective measure of HL.

5. Medical Term Recognition Test (METER)

   The METER is a 2-minute, self-administered test that assesses prior experiences with reading texts (60). It contains 40 medical words and 40 non-words (pseudo-words). The patient marks the words identified as actual medical words and the number correctly identified is scored as having low (0–20), marginal (21–34) or functional (35–40) literacy levels. It is essentially a word recognition test that does not evaluate comprehension, vocabulary or syntax.

Health Activity Literacy Scale (HALS)

The HALS was developed by the Education Testing Services as an online test of general population health literacy (61,62). Health literacy skills are assessed in 5 domains; health promotion, health protection, disease prevention, healthcare maintenance and system navigation (63). The full 1-hour test includes 3 sets of health related literacy tasks that incorporate prose, document and quantitative items. Although a shorter 30-minute version has been described, it is not recommended as an evaluative measure (64). As use of the HALS in chronic medical conditions has not been reported in detail, widespread use of it is not yet recommended.

Issues with HL assessment tools

Existing HL measures are highly scripted and standardized to enable diverse populations to be tested using measures that are objective as well as being easy to administer, score and interpret (65). They rely on test-taking abilities without consideration of the impact of stress or fears of embarrassment, or the influence of age, language and culture. Test results grouped only as either “low” or “adequate” will miss those with very low or very high health literacy skills. Moreover, those identified as “low literate” may be uncomfortable with this label and reluctant to seek information on health intervention resources. Last, definitions of literacy that rely on reading and writing omit the many communications that utilize digital and multimedia methods. For example, Stickland and colleagues have shown that PR delivered by Telehealth resulted in improvements in health related quality and capacity comparable to standard PR (66).

Notwithstanding the above, existing tests do provide insights as to which patients might find healthcare information difficult to understand. Unfortunately, many healthcare professionals remain unaware of the existence of measures of health literacy and those who are aware do not administer them, because of budgetary or time constraints.

Recommendations for clinical practice

Roberts, Ghiassi and Partridge enumerated several important points that should be considered in addressing the impact of diminished health literacy in patients with COPD (67). Communication of information to the patient with COPD using simple action plans (66,68), is challenged in several ways, of which patient health literacy is only one. Beckman in a study evaluating the effect of physician behaviors on the collection of clinical information, noted that during 74 office visits only 23% of patients were able to complete their opening statements. For the total group, interruptions occurred on average 18 seconds after the patient began to speak. Clearly this limits the opportunity for the patient to absorb and reflect on the clinical information provided (69). Moreover, since in the tension of a brief clinical interview, patients may not recall the information provided, unless they actually believe that recommendation regarding exercise, education and self-management will positively affect their health, they will be less likely to respond to the recommendations made (69).

Innovative approaches to improve the effectiveness of respiratory consultations (Table 2) have included providing the patients with written details of their medications, providing them with a copy of the consultation letter sent to their primary care practitioner and providing a glossary of medical terms used in order to assist their understanding of written material (70). Telephone intervention has also been shown to enhance medication adherence and increase confidence in self-management (71). For those who have low literacy levels or diminished language skills, pictograms and videos provide an effective alternative method of communication able to transcend language and culture (72,84,73).

Table 2.  Recommendations for clinical practice

1) Listen without interruption (69)

2) Use simple language and provide written material with minimal clinical jargon (21, 23,24)

3) Dictate consultation letter in front of the patient (67)

4) Offer to provide patient with a copy of the consultation letter (70)

5) Provide a glossary of terms used in the written material (70)

6) Use telephone follow-up or case management to maintain adherence (68,71)

7) Use simple action plans with pictograms rather than words (66,68,76)

8) Encourage patients to be accompanied by someone with good literacy skills (67)

9) Use a teach-back method for patient to explain the recommendations to the practitioner (67)

10) Provide instructional material in the patients native language (82,83,88)

In a detailed review of the role of pictures in improving health communication, that included attention, comprehension, recall and adherence, Houts and colleagues (72,74) in a summary of peer reviewed studies in health education, psychology, and marketing noted that pictures when linked to spoken or written words markedly improved attention to and recall of medical information, compared with text alone. They noted that although all patients benefitted, those with low health literacy were especially likely to do so. Roberts and colleagues evaluated the effectiveness of a pictorial COPD action plan among a group of patients with limited HL and noted that when the concept of self- management was explained together with the pictorial action plan, the patients were able to correctly answer each of the 5 assessment questions that evaluated their understanding of self- management (76).

Both lack of awareness of health literacy by the healthcare professional and the patients’ reluctance to acknowledge their literacy needs contribute to poor communication (75,76,77). Although many healthcare professionals are unaware that health literacy may be tested (78,79), or do not seek to administer them due to budgetary or time constraints, a recent study by Ryan et al. (80) reported that most patients asked to take a health literacy test, agreed to so.

Additional clinical approaches that are used to communicate health information include the patients being accompanied by someone whose literacy skills are more likely to promote information transfer. Prior to their appointment patients, may benefit from adopting the “Ask-Me-Three” approach, namely: “What is my problem?” “What can be done about it?” and “How is that going to help me?” (81) The HCP should employ plain language rather than technical jargon and use a teach-back method in which the patient explains back to the practitioner the recommendations just given. When possible, instructional materials and medical recommendations should be available in the patient's native language and at an appropriate literacy level, using more than one of the available modes of communication (82,83,84,85,86). Supporting strategies such as adult education (87,88,89), better training for health professionals (90) and the use of a healthcare system “navigator” (91) to assist the patient, are heavily dependent on local availability.

Conclusions

There is a growing appreciation that diminished HL impacts on health related outcomes and resource utilization in conditions such as COPD. Given that patients with inadequate literacy skills face significant barriers to accessing, understanding and applying health information, health literacy should be assessed by healthcare practitioners. Those testing should be mindful of the stigmata associated with the identification of reduced HL among populations at risk, as well of the influence of culture and language on test results. Several simple approaches that take into account the impact of diminished HL may be incorporated into clinical practice. The extent to which care can be adjusted to account for diminished HL will depend on awareness of the issue, budgetary limitations, staffing, time constraints and the patient-provider relationship.

Acknowledgments

This project was funded by West Park Hospital Foundation and by an unrestricted educational grant from GlaxoSmith Kline Inc. Dr. Roger Goldstein is supported by the National Sanatarium Association- University of Toronto Chair in Respiratory Rehabilitation Research. Dr. Dina Brooks is supported by a Canada Research Chair (Tier 2).

Declaration of Interest

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.