Working With Patients With Low Literacy Skills?

Assessment of and Assistance for Patients with Low Literacy Skills

Please note that this does not address the needs of those with language barriers and or cultural barriers. While language, literacy, and culture are all determinants of health that have significant overlap, this review attempts to parse out the role of literacy in the health care encounter.

Take home points: Providers routinely overestimate the literacy skills of our patients A simple question detects 80% of all low health literacy patients: “How confident are you filling out medical forms by yourself?”, consider using it with all new patients Hand-outs should be at the 5th grade reading level or below Use the teach-back method to confirm understanding

General facts The National Adult Literacy Survey (1992) estimates that 1 in four adults in this country are functionally illiterate and literacy skills have been shown1 to be a stronger independent predictor of health than educational level, employment status, income, or ethnicity. There is evidence showing that patients with low literacy have significantly poorer health outcomes including general health status and likelihood to be hospitalized on the order of 1.5 to 3 times as high as that of those with average or high literacy skills2. This is likely related to the gap between what providers believe that their patients understand and what is really communicated in the health care setting. A 2007 study revealed that physicians overestimate the literacy skills of approximately 40% of their patients3.

Special populations at higher risk for low literacy include  those over age 60  low income  minority status  recent immigrants  incarcerated  low number of years of education  populations in the South and the NorthEast

In particular, more than half of the population over the age of 60 (who also have the largest number of chronic comorbidities requiring significant management) consistently perform poorly on health literacy tests.

1 Partnership for clear health communication, 2003 2 Dewalt DA, Berkman ND, Sheridan S, Lohr KN, Pignone MP “Literacy and health outcomes: a systematic review of the literature”, J Gen Intern Med, 2004 Dec;19(12):1228-39 3 Kelly PA, Haidet P “Physician overestimation of patient literacy: a potential source of health care disparities” Patient Educ Couns 2007 Apr;66(1):119-22

GodzichLinda Nakell Page 1 11/27/2017 Informal Assessment

In the absence of the use of systematic screening tools, there are some behavioral clues4 that may point the provider towards the use of simplified language and educational tools:

Behavioral Clues to identify the low literacy patient

 Postponing decision making (“can I take the information home to read later?”)  Poor adherence to recommended interventions  Making excuses (“I forgot my glasses”, “My allergies are making it hard to see”)  Repeatedly missing appointments  Bringing family members along for help  Asking staff for help, to go over instructions again  Watching others to mimic behavior

Formal Assessment Tools

The REALM - Rapid Estimate of Adult Literacy in Medicine Developed in 1991, the shortened form of this test takes approximately 2 minutes to administer, and correlates closely with three other previously verified reading skill exam results5. It consists of the examinee reading a list of primarily health related terms aloud, with an interviewer who notes when the reader stumbles or mispronounces words. The number of “missed words” determines the patient’s health literacy.

However, even 2 minutes can be too long to use in a busy clinic visit. The REALM also has the disadvantage of having the format of a “test”, which can be off-putting for patients. The use of a single question has been shown to correlate well with the results from the REALM. The use of “How confident are you filling out medical forms by yourself?” detected approximately 80% of all patients with limited or marginal literacy skills (as defined by the REALM)6. The formulation of this question may actually serve as a starting point for a conversation about the patient’s living conditions without putting the patient on the spot.

4 Adapted from Baker DW, Parker RM, Williams MV, Pitkin K, Parikh NS, Coates W, et al, “The health care experience of patients with low literacy”, Arch Fam Med 1996; 5:329-34 5 Davis TC, Long SW, Jackson RH, Mayeaux EJ, George RB, Murphy PW, Crouch MA, “Rapid Estimate of adult literacy in medicine: a shortened screening instrument”, Fam Med, 1993 Jun 25(6):391-5 6 Wallace LS, Rogers EC, Roskos SE, Holiday DB, Weiss BD, “Brief Report: screening items to identify patients with low literacy skills”, J Gen Intern Med, 2006 Aug;21(8):874-7

GodzichLinda Nakell Page 2 11/27/2017 Recently, another short (3min) screening tool was developed that can be used to assess the patient’s literacy without the presence of an interviewer. NVS – the Newest Vital Sign is a series of 6 questions based on a nutrition label with those answering 4 or more questions correctly being able to grasp the content of most patient information handouts. This test detects 88% of those identified by TOFHL (Test of Functional Health Literacy in Adults, a much longer previously validated screening tool) as having low health literacy. It also has the added advantage of having a Spanish language form that detects approximately 72% of those with limited health literacy7.

Basic measures

It is disheartening to learn that a recent systematic review8 of interventions undertaken to improve health outcomes in this population was unable to draw conclusions about the effectiveness of the interventions (due to “limitations in study design, interventions tested, and outcomes assessed”). However, there are some basic principles to stick to when working with patients with low literacy:

When working with low literacy patients

 Keep key messages to patients to a minimum.  Use the teach-back method with patients to ensure that they understand their care regimen and warning signs.  Never ask, " Do you understand?" Ask patients to explain processes.  Have your written patient education materials reviewed by a literacy expert to determine grade reading level. Materials should not be above a fifth-grade level, and should be culturally appropriate.

Tools for creating hand-outs for patients with low literacy skills: http://www.hsph.harvard.edu/healthliteracy/materials.html this webpage groups several key recommendations regarding how to make patient hand outs – including information on language to use, organization of information provided, and overall document design and layout. It also has links to other tools developed by national centers including the NIH and the CDC.

Local Referrals

7 Weiss BD, Mays MZ, Martz W, Castro KM, DeWalt DA, Pignone MP, Mockbee J, Hale FA, “Quick assessment of literacy in primary care: the newest vital sign”, Ann Fam Med, 2005 Nov-Dec; 3(6:514-22) 8 Pignone M, Dewalt DA, Sheridan S, Berkman N, Lohr KN, “Interventions to improve health outcomes for patients with low literacy. A Systematic Review”, J Gen Intern Med 2005 Feb;20(2):185-92

GodzichLinda Nakell Page 3 11/27/2017 Bay Area Literacy Referral Network (888) 740-7323 888-740 READ http://www.literacynet.org/balit/

Project Second Chance – CCLibrary Adult Literacy program http://www.ccclib.org/psc/ A county wide library based program with training for tutors and library based events

Literacy for Every Adult Project (LEAP) - Richmond Library http://www.ci.richmond.ca.us/index.asp?nid=788 (510) 307-8084 Information Richmond based program for literacy teaching

National resources

American Literacy Directory & National Literacy Hotline www.literacydirectory.org (look up local programs nationwide based on zipcode) (800) 228-8813 Information

National Institute for Literacy http://www.nifl.gov/ (info on nationwide programs, assessment tools and statistics) (202) 233-2025 Information

For further information NIH bibliography for Understanding Health Literacy and its Barriers http://www.nlm.nih.gov/pubs/cbm/healthliteracybarriers.html

GodzichLinda Nakell Page 4 11/27/2017 Appendix REALM Rapid Estimate of Adult Literacy in Medicine Patient name ______Date of birth______Reading level______

Date Clinic ______Examiner ______Grade completed ______

List 1 List 2 List 3 Fat Fatigue Allergic Flu Pelvic Menstrual Pill Jaundice Testicle Dose Infection Colitis Eye Exercise Emergency Stress Behavior Medication Smear Prescription Occupation Nerves Notify Sexuality Germs Gallbladder Alcoholism Meals Calories Irritation Disease Depression Constipation Cancer Miscarriage Gonorrhea Caffeine Pregnancy Inflammatory Attack Arthritis Diabetes Kidney Nutrition Hepatitis Hormones Menopause Antibiotics Herpes Appendix Diagnosis Seizure Abnormal Potassium Bowel Syphilis Anemia Asthma Hemorrhoids Obesity Rectal Nausea Osteoporosis Incest Directed Impetigo List 1 score ____ List 2 score ____ List 3 score _____ Raw score______Directions:

1. Give the patient a laminated copy of the REALM form and score answers on an unlaminated copy that is attached to a clipboard. Hold the clipboard at an angle so that the patient is not distracted by your scoring. Say: "I want to hear you read as many words as you can from this list. Begin with the first word in List 1 and read aloud. When you come to a word you cannot read, do the best you can or say, 'blank' and go onto the next word."

2. If the patient takes more than five seconds on a word, say "blank" and point to the next word, if necessary, to move the patient along. If the patient begins to miss every word, have him or her pronounce only known words.

GodzichLinda Nakell Page 5 11/27/2017 3. Count as an error any word not attempted or mispronounced. Score by marking a plus (+) after each correct word, a check (4)after each mispronounced word, and a minus (-) after words not attempted. Count as correct any self-corrected words.

4. Count the number of correct words for each list, and record the numbers on the "Score" line. Total the numbers, and match the score with its grade equivalent in the table below.

Scores and Grade Equivalents for the REALM Questionnaire Grade equivalent Raw score Grade range 0 to 18 Third grade and below; will not be able to read most low-literacy materials; will need repeated oral instructions, materials composed primarily of illustrations, or audio or video tapes 19 to Fourth to sixth grade; will need low-literacy materials, may not be able to read prescription labels 44 45 to Seventh to eighth grade; will struggle with most patient education materials; will not be offended by 60 low-literacy materials 61 to High school; will be able to read most patient education materials 66 Rapid estimate of adult literacy in medicine (REALM). Reprinted from Health literacy: A prescription to end confusion. Institute of Medicine, 2004. Accessed online July 8, 2005, at: http://www.nap.edu/books/0309091179/html/301.html.

Newest Vital Sign The NVS presents patients with a nutrition label (from a container of ice cream) specifically designed and tested as part of NVS development (Figure 5). The examiner asks the patient 6 questions about the content on the nutrition label. Answering the questions correctly requires the ability both to read and understand the content on the nutrition label (eg, to determine if the list of ingredients on the ice cream label contains a substance to which the patient is allergic) and also to perform computations (eg, numeracy to calculate the number of calories in a serving of ice cream).

GodzichLinda Nakell Page 6 11/27/2017 Nutrition label used in the Newest Vital Sign health literacy assessment (English version). Courtesy of Pfizer, Inc.

The patient's response to each of the questions is scored as correct or incorrect. One point is assigned for each correct answer, yielding a score that can range from 0 to 6. Patients who score 4 to 6 are classified as having adequate health literacy skills. Those who score 2 to 3 are classified as "possibly" having low health literacy, and those with a score of 0 to1 are classified as "likely" having low health literacy. The sensitivity and specificity of the NVS's English and Spanish versions are shown in Table 3.

Performance Characteristics of the Newest Vital Sign for Detecting Limited Health Literacy

Likelihood Version Score Sensitivity Specificity Ratio English 0-1 72% 87% 5.4 2-3 100% 64% 1.2 4-6 - - 0 Spanish 0-1 77% 57% 1.8 2-3 100% 19% 0.6 4-6 - - 0

Data from: Weiss BD, Mays MZ, Martz W, et al. Quick assessment of literacy in primary care: the Newest Vital Sign. Ann Fam Med. 2005;3:514-522.

GodzichLinda Nakell Page 7 11/27/2017