CASE 9

Mary Jones

A 2-year-old Caucasian girl with delayed speech development

Dodi Meyer, MD, Hetty Cunningham, MD, Rica Mauricio, and Alexandra Schieber

Columbia University College of Physicians and Surgeons, New York, NY, USA

Educational Objectives

TACCT Domains: 1, 4

Case Summary, Questions and Answers

Mary is a 2-year-old Caucasian girl who comes to the community-based primary care clinic with her mother (Ms. Jones) for her well child care visit. She is seen by her pediatrician, Dr. Robinson. During the routine developmental screening, Dr. Robinson queries the mother about the number of words that Mary can say and about her ability to put two words together. Ms. Jones reports that Mary only speaks two words other than “mommy” and “daddy.” Mary’s physical exam is normal and she has no other abnormalities. Her gross and fine motor skills are normal. Records show that Mary also passed her universal newborn hearing screening test. Dr. Robinson explains to Ms. Jones that Mary has delayed speech development. She suggests that Mary be referred to the Early Intervention Program for evaluation of the speech problem and for coordination of speech therapy. She also recommends that Mary’s hearing be retested. Dr. Robinson calls Early Intervention while the mother is in the office and tells Ms. Jones that Early Intervention will call her at home to set up an appointment. Before leaving the clinic, the front desk makes an appointment for a hearing evaluation at a specialty office elsewhere in the city and gives the mother a slip with this information. Ms. Jones is also given a follow-up appointment with Dr. Robinson in 1 month. Mom seems very concerned, says “thank you,” and appears to understand.

1 What additional information might have been helpful to Dr. Robinson in developing a plan of action for Mary and her family?

In order to assess a patient’s ability to follow-up with any clinical recommendation, their social context needs to be explored. To gain understanding of factors that may impact on a patient’s ability to adhere to recommendations, we suggest using the “Four Domains of the Social Context” “Review of Systems” described by Green and coworkers, as shown in Table 9.1. Similar to the traditional review of systems, these questions are used selectively in a focused, problem-oriented manner. In this case, the following questions would be helpful:

Table 9.1 The Four Domains of the Social Context “Review of Systems”*

Source: Green A.R., Betancourt J.R., Carrillo J.E. Integrating social factors into cross-cultural medical education. Acad Med 2002;77:193–7.

Social stressors and support network
What is causing the most stress in your life? How do you deal with this?†
Do you have friends or relatives that you can call on for help? Do they live with you or close by?
Are you very involved in a religious or social group?
Do you feel that God (or spirituality) provides a strong source of support in your life?
Change of environment
Where are you from originally? When did you come to this (country, city, town)?
What made you decide to come to this (country, city, town)?
How have you found life here compared with life in your (country, city, town)?
What was medical care like there compared with here?
Life control
Do you ever feel that you’re not able to afford food, medications, and/or medical expenses, ?†
How do you keep track of appointments/medications?
Are you more concerned about how your health affects you right now, or how it might affect you in the future?
Do you feel that you have the ability to affect your own health (or particular medical condition) or is it out of your control?
Do you ever feel that you are treated unfairly by the health care system for any reason (e.g. socioeconomic status, insurance status, race/ethnicity, language, etc.)?†
Literacy
Is understanding or reading your medicine bottles’ instructions or other patient information difficult for you?
Do you have trouble with reading in general?†

*This list presents examples of questions in four major domains of social-context analysis. Exploration of these domains can be helpful for all patients, but particularly so for non-majority patients, and is a necessary complement to exploration of cross-cultural domains.

†This is one of a number of questions that may be particularly difficult for patients to discuss openly. It may be helpful to preface the question with a statement of normalization, e.g. “I find that many people have trouble reading the complicated instructions that doctor’s give out. Have you had trouble with this?”

Unfortunately, Dr. Robinson did not go through these questions during this visit. In many instances, when there are pressing “medical” issues, providers overlook the social context due to time pressures; alternatively, they may not appreciate the value of these types of questions. Ultimately, investing the time in obtaining this information up front often proves to be crucial in creating a partnership between physician and patient, which in turn increases physician understanding, facilitates patients’ adherence, and improves health outcomes.

Universal Newborn Hearing Evaluation

Significant hearing loss is one of the most common major abnormalities present at birth and, if undetected, impedes speech, language, and cognitive development. In 1999, the American Academy of Pediatrics recommended the development of national universal newborn hearing screening programs. This policy establishes benchmarks to ensure that all newborns with hearing loss are identified prior to hospital discharge or before 3 months of age. Early detection of hearing loss coupled with early intervention has been shown to maximize the development of linguistic and literacy skills, cognition, reading, and social emotional development.

Early Intervention

The Early Intervention Program is part of a national effort initiated by Congress in 1986 through the passage of the Individuals with Disabilities Education Act (Public Law 99-457). The law created an entitlement to a wide range of rehabilitative services for infants and toddlers from birth through age 2. Early Intervention is a comprehensive interagency program that supports infants and children with developmental delays through provision of needed therapies and case coordination. As a federal entitlement program, these services are universally available at no cost to the family.

One month later, Ms. Jones and Mary return to the office for their follow-up visit. Dr. Robinson asks if Mary’s hearing has been tested, and Ms. Jones says she did not go to the hearing appointment. When asked why, she said that she was working and was unable to take time off to go to the appointment. When questioned whether the Early Intervention Program had called, Ms. Jones said that no one had contacted her. At this visit, Ms. Jones seems most concerned about Mary’s fever, runny nose, and ear pain. Dr. Robinson’s physical exam reveals that Mary has an ear infection, and she prescribes an antibiotic suspension. Dr. Robinson instructs Ms. Jones to give Mary 1 teaspoon of the antibiotic, 2 times per day for 10 days. Ms. Jones nods and seems to understand. Dr. Robinson informs Ms. Jones that the hearing test needs to be rescheduled and that she will re-refer Mary to Early Intervention. Ms. Jones is instructed to return to the clinic in 1 month for follow-up and she agrees. After the visit, Dr. Robinson wonders why Ms. Jones did not follow-up and calls Early Intervention to investigate. They explain that they tried to reach Ms. Jones several times, but were unsuccessful by phone. They sent two follow-up letters instructing her to schedule an appointment, but she never did. Dr. Robinson requests that these letters be faxed to the office for verification.

2 At this second visit, what are the potential reasons that Ms. Jones did not call Early Intervention to schedule an appointment for her child to have the hearing test?

When a patient does not follow through on previously discussed recommendations and agreed upon scheduled appointments, a provider should initiate a model of patient centered interviewing to assess the patient’s perspective on the issue. This model allows a provider to explore nonadherence in a nonjudgmental way. When teaching, we refer to this process as developing a differential diagnosis of noncompliance.

We have adapted the Transtheoretical Model for behavior change as shown in Table 9.2 to help identify where the patient is in his/her thinking and to guide the clinician’s efforts. Based on this model, Ms. Jones appears to acknowledge that Mary’s speech is different from other children and to accept that this is a problem that needs to be addressed. Furthermore, she has expressed a desire for help. However, it would have been helpful for Dr. Robinson to explore her understanding and motivations in more detail.

Ms. Jones returns to the clinic with Mary 1 month later as scheduled. Ms. Jones explains that Mary’s cold and ear pain have resolved. However, when Dr. Robinson asks if Mary took the antibiotic for all 10 days, Ms. Jones responds: “Yes. But it was hard to give the medicine in the ear, because the drops kept rolling out.” When Ms. Jones is asked about the Early Intervention appointment, she says, “They never called.”

Table 9.2 Using the Transtheoretical Model to explore nonadherence

Source: Prochaska J.O., Norcross J.C., DiClemente C.C. Changing for Good. William Morrow, New York, 1994.

• Does the patient identify the issue (behavior)?
(Does the mother think that her child talks less than other children?)
• Does the patient identify a problem?
(Does the mother think there is anything wrong with the child’s speech development compared with other children her age?)
• Does the patient desire a change?
(Does the mother wish to get help for her child’s speech delay?)
• Does the patient feel confident that he or she can make a change?
(Explore the barriers to obtaining the services.)
• Finally, if the patient is ready, give advice and facilitate an appointment for the patient to make the change.

3 What does Ms. Jones’ confusion about giving oral medication in the ear indicate?

The improper placement of liquid antibiotic into the ear, instead of the mouth, indicates that Ms. Jones has trouble comprehending dosing instructions; either the medication instructions were improperly given/read or they were not read at all. At this point, it is important to consider the patient’s health literacy level. According to Healthy People 2010, health literacy is defined as “the degree to which individuals have the capacity to obtain, understand, and process basic health information and services needed to make appropriate health decisions.” Studies have demonstrated that individuals with low health literacy have poor health status, communication problems with providers, poor knowledge of their disease states and medication regimens, increased hospitalizations, and problems with medication adherence. The ability to read medication labels and follow their instructions, to fill out insurance forms, and to navigate the medical system all require high levels of reading and numerical skills.

To address these problems, specific communication tools have been developed and demonstrated to be effective in improving patients’ understanding of medication instructions and prescribed treatments. Two highly regarded and well-evaluated communication tools are: the “Teach Back Method” and visual aids/pictorials. When using the Teach Back (or Playback) Method, the provider asks the patient to restate in his/her own words the directions that have just been given. This method encourages the clinician to take responsibility for the patient’s understanding of instructions. In this case, Dr. Robinson might have asked:

“In order to make sure that I explained this to you well, could you please tell me how you are going to give this medication to Mary?”

Not surprisingly, literature has also shown that, when pictorials are combined with written or oral instructions, patient understanding of how to take medications is increased. Finally, limiting the quantity of information given at each clinical interaction and repeating instructions are always useful in improving understanding.

One month later, when Ms. Jones and Mary return for their fourth visit, Dr. Robinson asks about the referrals. Mary’s mother again denies being contacted by Early Intervention. Dr. Robinson asks her if she thinks her daughter’s speech delay is important and if she is concerned. After Ms. Jones states that she is very concerned, Dr. Robinson asks screening questions to elicit evidence of maternal depression or domestic violence, responses to which are both negative. Dr. Robinson hands the mother the letter she received from Early Intervention via fax. When Dr. Robinson asks the mother to read the letter, Ms. Jones says she doesn’t have her glasses. Dr. Robinson then looks at the chart registration form completed by Ms. Jones on her initial visit to the clinic. She notes that the form is incomplete and contains many spelling errors; this causes her to suspect that Ms. Jones may be illiterate. She then asks Ms. Jones, “Do you feel comfortable reading this letter?” Ms. Jones replies, “No.”

On further exploration, Ms. Jones reveals that she works from 7 a.m. to 7 p.m. and has no answering machine, so she never received the phone messages from Early Intervention. Dr. Robinson suspects that, in addition to her inability to read, Ms. Jones may not be able to read the bus and subway maps necessary to go to the audiologist’s office. Armed with this information, she assigns an office staff member to reschedule Mary’s Early Intervention and audiology appointments and to teach Ms. Jones how to get there by public transportation.

4 Why did it take 4 months and four visits to learn that Ms. Jones cannot read?

Health professionals rarely screen for illiteracy. Providers often associate illiteracy with poor, immigrant patients who do not speak English. Because Ms. Jones is not physically or demographically identified as an immigrant or non-English speaker, Dr. Robinson did not initially consider illiteracy. In fact, she may have been uncomfortable asking about reading ability because she did not want to insult her patient, thus jeopardizing the doctor–patient relationship.

There have been a number of studies that have evaluated providers’ ability to identify illiteracy in their patients. For example, in one study, doctors correctly identified only one-third of their patients with low literacy. Not surprisingly, illiterate patients are often adept at hiding their inability to read. One study asked patients in a public hospital who had difficulty reading, “Who knows you have difficulty reading?” Sixty-seven percent of these patients never told their spouses, 19% had never told anyone, and more than 75% said they had never brought anyone who could read with them to the hospital or doctor’s office.

According to the Institute of Medicine, nearly half of all American adults, 90 million, have difficulty understanding and acting upon health information. Examples of illiteracy can be seen in populations beyond immigrants and U.S.-born citizens and across boundaries of race, socioeconomic status, age, and sex. Because nonreaders tend to hide their handicap very well, health care providers and health care facilities often fail to notice, if they are looking for it at all. Special care to screening and attention must be given to patients who cannot read so that they, together with their providers, can take control of their health and the health of their families. Strategies must be put in place to assist in the identification of illiterate patients as they present for care so that their providers can deliver appropriate, efficient, and high-quality health care.

5 How can patients who have low literacy be identified?

As noted above, it can be very difficult to identify patients with inadequate literacy because of embarrassment over the subject. Table 9.3 lists indicators of low literacy level, and Table 9.4 lists direct approaches for identifying low literacy levels.

6 How could this case have been handled better to improve understanding and address patients with inadequate literacy?

Health care systems need to develop processes and multiple points to identify truly illiterate patients as they enter the medical setting. Had Ms. Jones’ illiteracy been identified when she presented for care, Dr. Robinson would have spent significantly less time on this issue, and the child’s receipt of needed services would have been expedited.

During the family’s first and second visits, the quality of care provided by Dr. Robinson would have been improved had she explored the social context. In her review, she might have elicited the many barriers to care: illiteracy, lack of ability to navigate public transportation, long work hours, and lack of an answering machine. Providers, who are inevitably rushed do not always have time to follow the lines of questioning suggested in this case. Frequently, during subsequent visits, when a patient returns without having followed a plan of care, providers have additional opportunities to engage and access tools essential to delivery of quality care to vulnerable patients.

Table 9.3 Indicators of low literacy level

Source: Carroll N. Health Literacy: A Prescription to End Confusion. Institute of Medicine, National Acadamies Press, Washington DC, 2004.

• Registration forms are filled out incorrectly or are illegible.
• Health questionnaires are skipped.
• Appointments are frequently missed.
• Frequent medication errors.
• The patient cannot name the medications he/she takes, is unable to explain why the medication was prescribed, or when and how to take it.
• The patient has memorized instructions and can repeat them, but cannot answer questions such as when a refill is needed or when the last dose was taken.
• Patients identify their medications by opening the bottles and looking at the pills rather than looking at the label.
• Lack of follow-through with referrals, imaging, and laboratory testing.
• Patients’ reports of medication compliance not consistent with objective laboratory evidence.
• Patients say, “Oh, I forgot my glasses,” or “I want to take this [written material] home to discuss with my wife/husband/children” rather than reviewing it with the clinician.
• Absence of newspapers, books, or magazines in the home.

Table 9.4 Strategies for identifying low literacy level

Source: Kuehn K.C. Quick Ways to Recognize and Cope with Illiteracy. American College of Physicians, April 2000.

• Show an empty pill bottle to the patient and say: “This isn’t your medicine, but if it was, how would you take it?”
• Tell a patient you would like to test their vision and give them a simple pamphlet or vision test card, starting with very large letters. If they say they forgot their glasses, be wary.

Finally, the key to high-quality patient care is patient-centered communication characterized by emphasis on respectful, active, nonjudgmental listening skills, and exploration of a patients’ understanding, desire, and ability to follow through on clinical management plans.

Motivational interviewing technique is a communication strategy that has been shown to be effective in helping patients modify addictive behaviors and is increasingly being applied in a variety of clinical settings. The goal of motivational interviewing is to understand what the motivational state of the client is at the time and to act appropriately.

Motivational Interviewing Techniques

Motivational interviewing is characterized by eliciting motivation from the client, not trying to impose it from the outside. It has been defined as a directive, client-centered counseling style for eliciting behavior change by helping clients to explore and resolve ambivalence. Resolving ambivalence is a key to motivational interviewing.

When people move into the contemplation stage, when they are thinking about changing vs. not changing, balancing out the pros and cons, they are more susceptible to real change. However, a helping professional who starts pushing behavior change at the client at this stage will meet resistance. It is the client’s task, not the counselor’s, to identify and resolve his or her ambivalence. What the client needs at this point is help listing pros and cons and a nonjudgmental, encouraging professional who really listens. The client determines whether their current behavior is consistent with their goals and then makes choices to move him or herself.

The counseling style is generally a quiet, supportive, and eliciting one. In this setting, effective patient education requires more active listening than talking. The therapeutic relationship is more like a partnership than one of expert/recipient, and good provider–client rapport is crucial for success. To complement motivational interviewing-based interviews, confidence and importance rating scales are often useful. The scales are used during or at the end of the visit, when a provider might ask: “On a scale of 1 to 10, how important do you feel it is to follow the plan we discussed?” (For example: to take this medicine or to go to this appointment)“And how confident do you feel that you can do this?” (For example: remember to avoid these foods or find your way to the appointment).

Health Literacy and Assessment Tools

Health literacy is a growing concern in the U.S. Approximately 25% of the U.S. adult population cannot understand written materials that require basic reading proficiency. The Institute of Medicine has found that 40 million people have trouble linking information from that found on a dosage table to instructions provided by their physician. In a study of patients at two public hospitals, investigators found that between 24.3% and 58.2% of patients did not understand directions to take medication on an empty stomach. In comparison to those with adequate health literacy skills, patients with low health literacy skills are more susceptible to hospitalizations, many of which are due to medication errors.

Patients with inadequate health literacy often encounter numerous obstacles when navigating the health care system. Before even meeting with a health care provider, patients may struggle with tasks such as scheduling an appointment, directions to the physician’s office, insurance forms, and clinic registration forms. Upon meeting with a physician, patients are often bombarded with pamphlets or explanations loaded with medical jargon. And many patients feel that their physicians spend little time explaining medical conditions. Studies estimate that medication nonadherence costs about $100 billion annually in the U.S. and accounts for 10% of hospital admissions.

Health care providers should be conscientious about the accessibility of health-related information they provide to patients. A sizable amount of health-related materials are written at a 10th grade level or higher. However, most adults read at an 8th or 9th grade level. One tool medical entities can use to assess the readability of health-related text is the SMOG Readability Formula. The SMOG Formula was created to assess the reading level required to read written work. The formula is developed on the basis of counting words of more than three syllables, taking the square root of the resulting number, and adding three. The subsequent numerical result of the formula corresponds to the appropriate grade level. A second tool to assess grade level of written materials is the Flesch-Kincaid Scale, which is included in many word processing software programs. Finally, providers should strive to use plain language, not medical jargon, when speaking with their patients.

Many health literacy experts advocate that health care entities should: (1) routinely assess literacy levels of patients and (2) distribute only health care material written at a low literacy level. We suggest three tools to assess patients’ literacy levels: the Rapid Estimate of Adult Literacy in Medicine (REALM), the Test of Functional Health Literacy in Adults (TOFHLA), and the Newest Vital Sign. The REALM test was developed as a quick estimate of reading level in a medical context and takes 2 to 3 minutes to perform. In theory, the REALM would be a viable method to assess literacy, but in some environments even this short test is difficult to apply. The TOFHLA test assesses both reading comprehension and numeracy skills but is lengthy at 22 minutes. The Newest Vital Sign (NVS) involves a nutrition label, six questions, and takes 3 minute to administer. More importantly, unlike the TOFHLA, the NVS is short, and unlike the REALM, the NVS can be used on both English- and Spanish-speaking patients.

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