1

Department of Veterans Affairs Medical Center

3001 Green Bay Road, North Chicago, IL 60031

“Analyzing Factors Affecting Functional Literacy in the Context of Primary Care Patient/Provider Communication”

Dr. Tariq Hassan, M.D., Veterans Affairs Medical Center, North Chicago, IL Dr. George Lutz, Ph.D, Veterans Affairs Medical Center, North Chicago, IL Dr. Tom Muscarello, Ph.D, DePaul University, Chicago, IL David R. Donohue. M.A., Qualitative Technologies Inc., Northwestern University

PURPOSE: Focusing On VA Patient and Provider Communication: Dr. Tariq Hassan, M.D. Chief­of­Staff, North Chicago Veterans Affairs Medical Center said, “Good communications builds and maintains quality health care exchange and delivery. It can also, facilitate and encourage patient participation in their care, reduces anxiety and help patient’s to become active participants in their treatment/care plans.

As discussed in this article, several factors play a key role in the communication process; however, literacy and ability to utilize the tools of communication are the basic currency of communication, and unless literacy issues are identified and properly addressed, it is unlikely that other interventions can be successful utilized to improve provider–patient communication. (1) (2)

From the administration/organization standpoint, effective communication with the patient can further the global drivers of health care, namely, access and timeliness of care, quality, patient satisfaction and cost effectiveness. A well­informed and participatory patient will probably keep appointments, thereby reducing costly no­shows and unnecessary ER visits. Patients can realize a greater overall satisfaction and level of care with improved patient/physician interaction. (3)

Increasing patient participation in their care plan and their compliance level will likely increase the effectiveness of the care itself, improve quality and reduce unnecessary utilization of resources. This can translate into improving overall cost effectiveness and utilization of human resources within the health care organization.”

ABSTRACT PURPOSE: North Chicago VA medical staff instituted a one­page primary care medical appointment information sheet to help patients navigate through their primary care appointment environment, but discovered 65% of patients discarded the information sheet. Healthcare providers wanted to know why the information sheet was not effective. METHOD: Data gathered in this study used 3 patient and 2 VA doctor/clinician focus groups. Each group contained 10­15 participants. Focus groups were 60­75 minutes in length. Participants were asked five to six questions focusing on health care communications. RESULT: Group discussion is particularly appropriate when the interview(s) have a series of open ended questions and wish to encourage research participants to explore the issues of importance to them, in their own vocabulary, generating their own questions and pursuing their own priorities. This helped our researchers to identify common ground, reveal health communication challenges and areas of convergence and divergence. CONCLUSION: Healthcare providers and patients acknowledge significant healthcare literacy problems exist. We recommend additional research on the impact of low literacy on elderly VA patients and their medication regimens, a growing VA population most­at­risk. In addition, each primary care VA patient should be given a health literacy screening test to establish a basic literacy baseline where new communication interventions can be made available to match that patient’s literacy level.

2

In addition, comparatively little attention has been devoted to enabling patients to comprehend their condition and treatment, to make the best decision for their care and to take the right medications at the right time in the intended dose. The result is many patients lack the confidence to ask questions concerning their healthcare. (4)

The modern VA healthcare system began during World War I with establishment of hospitals to treat and rehabilitate veterans with service­connected disabilities. A second role was added in 1924 with the addition of hospital care for lower­income veterans. Although the veteran population is projected to decline over the next 10 years, the demand for VA health care services continues to increase due to the aging of veterans (average age is 62­years) and the comprehensive health care services offered to veterans, including favorable pharmacy benefits; the national reputation of VA as a leader in the delivery of quality healthcare; long­term care services; and improved access to healthcare with the opening of additional community­based outpatient clinics. The VA is continuing to focus on meeting the needs of its core population, especially those with disabilities that are the result of military service. In 2005 the VA’s appropriation were $30.7 billion and with the continuing War in the Middle East is proposing to continue focusing health care on service­connected disabled veterans, as

well as, veterans with lower incomes and those who have special healthcare needs. (4)

A Diverse VA Patient Population—2006 The VA patient population is a vast heterogeneous group—over 5.7 million enrolled veterans, and over 25 million eligible vets. VA Medical Services represents the largest healthcare provider within the United States today, and will be faced with providing ongoing service to new military veterans, but also to an aging overall population with special healthcare needs. The VA population spans all races, numerous cultures, all levels of education, all socioeconomic strata, and both genders, with approximately 85 percent male. The VA patient population also shows a wide age range of 18 years and up, with two basic spikes 20 to 30 year old veterans with short military stints, and those over 50 years, representing retired military. This heterogeneity of the population points to the need for greater awareness of differences in attitudes, perception, and level of technological adeptness. Disabilities in the veteran population (includes blindness, deafness, multiple chronic disease states, and mental disorders) also present barriers to quality healthcare. (5)

Healthcare Literacy North Chicago VA Medical Center Poor Literacy is a marker for an array of problems within the healthcare system that go far beyond a persons reading ability or comprehension level. According to a major health literacy study (1), uncovered major misconceptions involving low literacy skills describing several such widely held misconceptions: people with low literacy skills are intellectually impaired and slow learners.

In fact, most people with low literacy skills are of average intelligence and function reasonably well by compensating for their lack of reading skills. In absolute terms, the majorities of those in low literacy populations are white, native­born Americans and hold a high school diploma. Among patients who did admit trouble reading, 40% felt shame and more than 50% had never told their spouses or children about their reading problem. (6)

METHOD: North Chicago V.A Medical Center One­Page Primary Care Patient Information Sheet Primary Care Appointment Procedural Policy within the North Chicago V.A. Medical Center used a single­ page patient informational handout to help patient’s understand appointment scheduling, medication routines, treatment protocols and other pertinent information critical to maximizing the quality of their

3

healthcare experience. However, North Chicago V.A. staff discovered in 2004, 65% of the primary care patient population did not use the information handout. Clearly, answers were needed to why this patient information sheet was discarded.

Using Focus Groups Data from this VA study used 3 patient focus groups and 2 VA medical provider staff focus groups, of between 10 to 15 participants, lasting between 60 to 75 minutes. Gaining access to such a variety of communication is useful because knowledge and attitudes are not entirely encapsulated in reasoned responses to direct questions. Everyday forms of communication may tell us as much, if not more, about what people know or experience, as to gather a wide concourse including developing an array of opinions and attitudes on issues impacting healthcare literacy, while helping to identify common ground.

Doctor/Clinician Focus Group Discussion Questions 1. Do your patients have problems comprehending and using healthcare information? 2. How do you communicate medical information to patients? 3. How do you know if patients understand information you give them? 4. How confident are you that your patient’s understand the steps they need to take in maintaining

and improving their health? 5. How can you improve communications with your patient’s? 6. Where are the strengths and weaknesses in healthcare communication at the VA?

Patient Focus Group Discussion Questions 1. Do you have problems comprehending and using healthcare information? 2. How does your doctor communicate medical information to you? 3. How do you tell your doctor about medical issues that you need to know more about? 4. How confident are you that you understand the steps you need to take in maintaining and

improving your health? 5. How can communications with your clinician be improved? 6. Where are strengths and weaknesses in healthcare communications at the VA?

Discussion Group Results Doctor/Clinicians and Patients­Array of Opinions and Attitudes

KEY COMMUNICATION RESEARCH FINDINGS ­ DOCTORS/CLINICIANS SIDE ♦Patient’s hide their literacy level ♦Need to ask patients about their literacy ability ♦Need easy wording in layman terms of diagnostics and medicines ♦Patients have challenges with understanding their multiple medications and treatment routines ♦Write things down, letters, explain things in greater detail ♦Patient’s wants oral communications and simple instructions

KEY COMMUNICATION RESEARCH FINDINGS ­ PATIENT SIDE ♦Patients prefer verbal explanations and simple written instructions ♦Patients need to ask more questions. ♦Patients want additional treatment and medication information ♦Talk in layman terms that I can understand ♦Keep instructions and medical explanations simple ♦Can I bring a friend along to help my healthcare outcome—having support is good. ♦Have additional medical information sources or health library available ♦Asking questions keeps communications open, making it a two way street. ♦They need to tell us in simple language what to do, but it must be useful and condensed. ♦Medical providers should listen more.

PATIENT ISSUES – PERSONAL ISSUES­DOCTOR/CLINICIAN SIDE RESPONSES 1. 3.

4

Patients can’t read Patients hide their literacy level VA patients getting older, sight, hearing, mental issues Loss of memory, trouble with memory Patient worry, patients are nervous during appointments

PATIENT ISSUES­ PERSONAL ISSUES ­PATIENT SIDE RESPONSES 1. Many VA patients have poor memory, can’t remember things Patients rely on their doctor for the right information, as if it were the Gospel Patients worry over test results and are stressed. Patients don’t understand medical terms and meds 2. Oral communications, followed by written communications 5. Exam and test results need to be explained. Have a patient appointment exit interview. Keep information simple. Patients want directions; need test results and what they mean.

HEALTH INFORMATION MATERIAL ISSUES­ DOCTOR/CLINICIAN SIDE RESPONSES 1. Patient’s need medicine lists and what meds do Use different forms of health education media. 3. Information is missing We don’t know if patients understand information given them 5. Font size on medical documents too small Directions need to be simple Develop a patient notebook, a profile to carry around Print patient charts (information) with pictures and symbols

HEALTH INFORMATION MATERIAL ISSUES­ PATIIENT SIDE RESPONSES 1. Talk in lay terms and tell me what’s going on Don’t understand the meaning of what doctor is saying. Keep the information simple. Patients want directions, need information on test results, meanings Patient wants to know the side­effects of their medications.

2. Preprinted information Personal medical information written out by doctor Doctor calls me on phone

3. 5. Patients need to ask more questions in Primary Care appointment time. Doctors spend too much time on their computer going over patient file information. Usually I think before I go and make my own little notes on what to ask when I go in. I use printed pamphlets, brochures, and internet I use medical books and encyclopedia, journals Doctors and Nurses tell me information, get opinions. Main medical information is my doctor. Patients prefer oral communications and written information.

6. It is probably more so that patients don’t start asking questions that they don’t have the time to answer. I would be worried that if we could see the screen all the time, we’d try to ask about everything on the screen. This would take up even more time.

PATIENT/CLINICIAN INTERACTION ISSUES­CLINICIAN SIDE 1. Type patient notes to give to them Appointment time is limited; spend more time going over things

5

We need to use new healthcare educational tools and see what works with particular patients

2. Patients are afraid to ask questions Have a family member or friend present, an advocate in the appointment Have MD’s/clinicians read instructions to patient

3. Patients are afraid to ask questions We don’t have a benchmark to measure patient understanding

5. Ask patient for a small list of problems to discuss Expand one­to­one contact time with patients Spend more face time with each patient Show more compassion, explain things, information

6. Doctor’s don’t explain enough Show more compassion, explain things, information Patients are afraid to ask questions

PATIENT/CLINICIAN INTERACTION ISSUES­PATIENT SIDE 1. I need answers to my medications and what they do Doctors need to explain things more Healthcare provider needs to ask patient if they understand the instruction they have given, and go over things. Doctor needs to ask nurse to go over things and explain to patient. 2. Doctor needs to review patient file the day before their appointment. Need faster medical consultation and my healthcare status. Give follow up written report after medical appointment, what’s happening to me?

3. Patient’s need to be honest, talk about their conditions openly. Improvements, as far as patient honesty goes I need to bring things up. You need to be able to get questions answered. 4. I need answers to my medications and what they do. The pharmacist needs to explain my meds to me and what they do. I don’t remember everything about my condition.

5. Where can I go for the right information on my prescriptions? Try a BEEPER to alert patient on test results Healthcare provider needs to ask patient if they understand their instructions.

6. Medical test follow­up, results need to be explained. This makes patients more responsible Patients not informed, they need more information Doctors need to explain things more Do more health screening, preventative medicine Doctor’s should not scare patients

TREATMENT/ADMINISTRATIVE ISSUES­PROCEDURE­CLINICIAN SIDE Document healthcare notes Make phone procedures simpler (inbound/outbound) Expand health clerk’s education Nurses take the lead in patient information­check information for patients Pharmacy denies medications Set up exit interviews for each patient Get patient coming out of the clinics for education, information

TREATMENT/ADMINISTRATIVE ISSUES­PATIENT SIDE 1. We need to update patient information (results) because people are waiting. I can’t understand him (The Doctor). At Hines and West Side VA you go see 1 doctor for an hour. A month later you have an appointment at the same clinic and see a different doctor.

6

A lot of them are students. You can’t understand them and they don’t understand you.

2. Doctors and Nurses tell me information, get opinions Main source of information is my doctor.

5. Medical specialist—follow­up—what’s going on and have primary care doctor explain things. we now get an appointment letter and phone call. The medical tests don’t tell you a reading on your test and don’t explain things. Doctors and Nurse seem to spend more time with patient explaining things, and see the patient understands. Changes patient want to see on clinic procedures

1. Provider interaction 2. New procedures overall to help patients 3. More patient education, to explain things

PATIENT PSYCHO­SOCIAL ISSUES­CLINICIAN SIDE Motivational issues Control issues Patients don’t want their medications Passive VA patient’s (not actively involved)

PSYCHO­SOCIAL ISSUES­PATIENT SIDE 1. 4. 6. N. Chicago VA Healthcare staff, friendly, professional and concerned about patients. Don’t talk over my head I’m confused by the high level medical talk

LITERACY ISSUES­PATIENT SIDE Prefer verbal explanations and simple written instructions Where can I go to get answers to my treatment or medications? Talk in layman terms that I can understand Keep things simple, instructions and medical explanations Literacy levels change in patients due to diet, fatigue, lack of sleep and other factors Use a 3” X 5” card to write questions down to ask doctors in appointments Patient’s want to become more active in their treatment

CONCLUSION: KEY RECOMMENDATIONS

1. Healthcare providers and patients acknowledged a healthcare literacy problem exists. Our recommendation is to institute a patient healthcare literacy screening test at the Primary Care Medical Appointment, as a benchmark to evaluating individual literacy level.

2. Additional research is needed to discover what healthcare educational media would be the most effective and useful to a particular patient’s literacy level.

3. We recommend research focusing on older VA patient population, a group most­at­risk. The VA needs to design new communication interventions helping patients with low literacy to manage their medication regimens to reduce errors, and noncompliance level, resulting in increased patient safety and quality of care of all stakeholders.

Establishing good communication practices between patient/clinicians help also to build strategies for improving patient compliance including giving clear, concise, and logical instructions in familiar language, adapting drug regimens to daily routines, eliciting patient participation through self­monitoring, and providing useful and understandable educational materials that promote overall good health in connection with medical treatment. (7) (8) (9)

Historically in medicine, there was a paternalistic approach to deciding what should be done for a patient: the physician knew best and the patient accepted the recommendation without question. This era is ending, being replaced with involving the patient directly in health care outcomes and the movement

7

toward shared decision­making. Patients are advising each other to "educate themselves and ask questions". Patient satisfaction with their care rests heavily on how successfully this transition is accomplished. Ready access to quality information and thoughtful patient­doctor discussions is at the fulcrum of this growing healthcare communication revolution. (10) (11)

Reference:

(1) Nielsen­Bohlman LT, Panzer AM, Hamlin B, Kindig DA. , editors. Institute of Medicine. Health Literacy: A Prescription to End Confusion.

(2) Davis TC, Wolf, MS. Health Literacy Implications for Family Medicine, Farm Med 2004 Sept; 36: 595­8.

(3) Shea JA, Guerra CE. Health Literacy Weakly but Consistently Predicts Primary Care Patient Dissatisfaction. Int. J Qual. Health Care, 2006 Dec 18 th

(4) Smith JL, Haggerty J. Literacy in Primary Care Population: Is It A Problem?” Can J Public Health, 2003 Nov­Dec; 94 (6): 408­12.

(5) Kelly PA, Haidet P. Physicians Overestimation of Patient Literacy: A Potential Source of Health Care Disparities. Patient Educ Couns, 2006 Nov 29

(6) Wallace L. Health Literacy Skills: The Missing Demographic Variable in Primary Care Research. Ann Farm Med. 2006 Jan­Feb; 4 (1): 85­6.

(7) Persell SD, Heiman HL. Understanding of Drug Indication by Ambulatory Care Patients. Am J Health Syst Pharm, 2004 Dec 1; (23) : 2503.

(8) Davis TC, Wolf MS. Low Literacy Impairs Comprehension of Prescription Drug Warning Labels. J Gen Intern Med. 2006 Aug; 21 (8): 847­51.

(9) Weiss BD, Mays MZ. Quick Assessment of Literacy in Primary Care: The Newest Vital Sign. Ann Farm Med. 2005 Nov – Dec; 3 (6): 514­22.

(10)Carty B, Kenney K. Consumer Informatics in Primary Care. Stud Health Technol Inform, 2006; 122: 36­37.

(11)Bailey P., Jones L. Family Physician/Nurse Practitioner: Stories of Collaboration. J Adv Nurs. 2006 Feb; 53 (4): 381­91.

Editor­ David R. Donohue, M.A. QTinc@alumni.northwestern.edu Cell (847) 651­3891