Adherence and Compliance: Is Our Language Patient Centric?
T1 HATE hate hate hate the word “adherence.” Makes pts who cannot follow instructions to the letter seem like unruly children. #hchlitss
— Laurel Ann Whitlock (@twirlandswirl) March 27, 2015 1
During a tweetchat held in March 2015, patients with chronic conditions shared their feelings about the words adherence and compliance. The above tweet illustrates the tone of that chat.
The language of medication taking
According to the Merriam-Webster Dictionary, compliance is “the act or process of doing what you have been asked or ordered to do.” 2
Perhaps the term “compliance” in medical literature evolved from efforts to control outbreaks of diseases like tuberculosis. Epidemics were widespread in the late 1800s and by 1889, Congress created the Public Health Service. In so doing, Congress declared war and commissioned officers to “prevent the introduction of epidemic diseases” into the US and “prevent the interstate spread of communicable diseases.” 3 It was a criminal act not to comply with quarantine rules and those who did not comply were termed “ignorant, vicious, recalcitrant, or defaulters.” This verbiage continued to be used even as late as in research from 1960 where people who didn’t take their medicines as prescribed were called “untrustworthy.” 3
In recent decades, there has been a movement to use the term “adherence” instead of compliance. The word adherence means “the act of doing what is required by a rule, belief.” 4
While “the term ‘compliance’ suggests a restricted medical-centered model of behavior…the alternative, ‘adherence’ implies that patients have more autonomy in defining and following their medical treatments,” according to a 1999 article in Diabetes Care. 5
Yet moving from using compliance to adherence when discussing medication-taking and following doctor’s orders has still been rocky, as the above tweet implies. Compliance and adherence are jumbled together: compliance being synonymous with following doctor’s orders in filling and refilling prescriptions or adherence meaning the ability to incorporate doctor recommendations into daily routines. What matters is that, when the medical and pharmaceutical communities frame medication using language like compliance and adherence, they lose a key resource: the patient.
A Hard Pill to Swallow: Why We Have Trouble Taking Medications
Taking medication can be quite complicated. Many factors play into the process, for example:
Data analysis by the CDC showed that about 8% of US adults indicated they didn’t take medication as prescribed to save money.
High prescription costs can prevent people from accessing and taking medications. People who don’t have enough money for food are more likely to go without their medications. This occurs more frequently among Hispanics and African Americans and those who have more than one chronic condition. 6
To address cost issues, 15.1% of people in the CDC analysis requested cheaper medication from their doctors, 1.6% bought their medication from another country and 4.2% used alternative therapies. 7 Observational research in clinic reveal that physicians are either unaware of or fail to address financial concerns. Often the onus is on the patient to know the costs and to advocate for themselves over costs. 8 Encumbered with health concerns, the embarrassment of financial disparities and the skewed dynamics of the physician-patient relationship, it’s little wonder that patients are overwhelmed.
Complicated medication regimens
Another reason may have to do with treatment protocols. Researchers from the Mayo Clinic and the Olmstead Medical Center found that almost 70% of people in the US took at least one prescription medication, more than half take two and 20% take five or more prescription drugs. 9
Among people taking statins, the researchers learned that over a 3-month period, the average number of prescriptions to be filled was 11.4 and the number of different medications was 6.3, requiring an average of five visits to the pharmacy per person. 10
A 2001 review of the literature found that the more times that people had to take their medications per day, the greater the number of problems there were in staying on track. With one dose per day, the average dose-taking compliance was 79% but for four doses per day that number was 51%. 11
In another study, researchers tried to understand how well people are able to organize medication taking by having 464 adults schedule a daily seven-pill regimen. The medications were to be taken at a variety of times throughout the day. Even though two medications were to be taken at the same times, 31% of the participants didn’t assign the drugs to be taken at the same time. Another pair of drugs had the same regimen except that one of the drugs required food with it. Almost half of the participants failed to assign these medications to be taken at the same time. The more complex their medication treatment, the less likely people were able to determine when medications should be taken. 12
Inconsistent and incomplete information from medical professionals can compound people’s difficulty in organizing their medication taking.
In one study, when physicians prescribed a new drug, the specific name, purpose of the medication, adverse side effects, and even how long to take the medication were left out of the physician-patient exchanges. Dosing directions were explained for less that 60% of the new medications. 13
Complete explanations for medication taking might get short shrift if doctors and patients don’t have enough time together. One study conducted in 2007 found that the average amount of time people spent with primary care physicians was 17.4 minutes. 14
A health literate patient should be able to obtain, process, and understand basic health information and services needed to make appropriate health decisions. 15 The skill set includes being able to listen effectively, discuss health concerns and explain symptoms accurately as well as being able to judge risk and understand mathematical calculations.
But if faced with a complicated and dangerous diagnosis, even those who are health literate can falter in their understanding of the information placed before them. In fact, even under optimal circumstances, patients dealing with cancer diagnoses, for example, leave the physician’s office with only about 50% of the information that has been provided to them. 16
There could be many reasons why patients are not “compliant” or “adherent” and such language alienates people who may be actively trying to take care of themselves and obscures what is really happening.
For example, these words imply a dichotomy: either you are adherent or you are non-adherent. What if you forget to take your medication once or twice, but otherwise stay on track with the treatment? You would be classified as non-adherent. Likewise, you might take your medication consistently but at a lower dose. Are you classified as adherent? 3
Furthermore, the impact of this erosion of trust due to ‘lack of compliance’ and the taboo subjects that often lead to lack of compliance (finances, cultural norms, shame) cannot be understated. These words stigmatize people who may not have taken every pill at the desired time and can interfere with relationships between those people and future providers. 3
As stated in “Embracing Patient Centric Healthcare,” empowering patients requires two-way communication. It also implies respectful language. Only by being open to the patient experience can a new language of medication-taking evolve. Starting and continuing the process of connecting and interacting with patients can lead to the creation of this language together.
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1 TwirlandSwirl (2015, March 26) T1 HATE hate hate hate the word “adherence;” Makes pts who cannot follow instructions to the letter seem like unruly children. [Twitter Post]. Retrieved from https://twitter.com/twirlandswirl/status/581250503352422400.
2 compliance. (n.d.).In Merriam-Webster’s online dictionary. Retrieved from http://www.merriam-webster.com/dictionary/compliance.
3 Steiner J, Earnest M. (2000). The Language of Medication-Taking.Ann Intern Med. 132:926-930. Retrieved from doi: 10.7326/0003-4819-132-11-200006060-00026
4 adherence.(n.d.). In Merriam-Webster’s online dictionary.Retrieved from http://www.merriam-webster.com/dictionary/adherence.
5 Lutfey, K & Wishner, W. (1999). Beyond “compliance” is “adherence”. Improving the prospect of diabetes care.Diabetes Care 22(4): 635-639. Retrieved from http://dx.doi.org/10.2337/diacare.22.4.635
6 Berkowitz, S., Seligman, H., Choudhry, N., (2014) Treat or eat: Food insecurity, cost-related medication underuse, and unmet needs. American Journal of Medicine, 127(4). 303-310. Retrieved from http://dx.doi.org/10.1016/j.amjmed.2014.01.002.
7 Cohen, R., Villarroel, M., (2015). Strategies Used by Adults to Reduce Their Prescription Drug Costs: United States, 2013. NCHS Data Brief , No. 184, January 2015. U.S. Department of Health and Human Services Centers for Disease Control and Prevention National Center for Health Statistics. Retrieved from http://www.cdc.gov/nchs/data/databriefs/db184.pdf
8 Ubel, P.A., Zhang, C.J., Hesson, A., Davis, K.J., Kirby, C., Barnett, J., & Hunter W.G. (2016). Study Of Physician And Patient Communication Identifies Missed Opportunities To Help Reduce Patients’ Out-Of-Pocket Spending. Health Affairs. 35, 4, 654-661. doi: 10.1377/hlthaff.2015.1280.
9 Mayonewsreleases. (2013). Nearly 7 in 10 Americans Take Prescription Drugs, Mayo Clinic, Olmsted Medical Center Find [Press Release]. Retrieved from http://newsnetwork.mayoclinic.org/discussion/nearly-7-in-10-americans-take-prescription-drugs-mayo-clinic-olmsted-medical-center-find.
10 Choudhry, N. et.al. (2011). The implications of therapeutic complexity on adherence to cardiovascular medications.Arch Intern Med. 171(9):814-22. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/21555659.
11 Claxton, A. Cramer, J., Pierce, C., (2001). A systematic review of the associations between dose regimens and medication complianceClinical Therapy. 23(8): 1296-310. Retrieved from https://www.ncbi.nlm.nih.gov/pubmed/11558866.
12 Wolf, M., et.al. (2011). Helping patients simplify and safely use complex prescription regimens.Arch Intern Med.171(4):300-305. Retrieved from doi:10.1001/archinternmed.2011.39.
13 Derjung M., et.al. (2006). Physician Communication When Prescribing New Medications.Arch Intern Med.166:1855-1862. Retrieved from
14 Tai-Seale, M. McGuire, T., Zhang, W., (2007). Time Allocation in Primary Care Office Visits. Health Serv Res. 42(5): 1871–1894. Retrieved from doi: 10.1111/j.1475-6773.2006.00689.x.
15 Ratzan, S., Parker, R., (2000). Healthy People 2010. U.S. Department of Health and Human Services. 2000.Washington, DC: U.S. Government Printing Office. Retrieved from https://health.gov/communication/literacy/quickguide/factsbasic.htm#one.
16 Davis, T. C., Williams, M. V., Marin, E., Parker, R. M. and Glass, J. (2002), Health Literacy and Cancer Communication. CA: A Cancer Journal for Clinicians52: 134–149. Retrieved from doi:10.3322/canjclin.52.3.134