The first post on compliance and adherence discussed the power of the words “compliance” and “adherence”, the history of their use and the negative impact these words have on people with chronic conditions.
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
Based on responses by e-patients in a twitter chat, here are a few
Reasons Why People Have Trouble Taking Medications
The Healthcare Team
Is there a healthcare team?
CT: Words matter as does collaboration. Patients need to be included in goal setting/treatment planning in order to follow plan. #hchlitss
— Stacey Tinianov (@coffeemommy) March 27, 2015
According to this group of e-patients, reasons behind people not take their medications as prescribed begin with the team. A patient-centered care team actually includes the ill person in partnership. If the patient desires, caregivers and family, pharmacist and other healthcare providers can be part of the team. Not everyone has to be present, but with chronic illness, there needs to be collaborative communication between the person who is ill and their prescribing physician.
Health Literacy and The Therapeutic Plan
Does everyone know the therapeutic plan? Does everyone understand the plan?
T2 And I’m sure there are people who don’t really understand how to use their medications, but don’t know where to reach for help. #hchlitss
— Laurel Ann Whitlock (@twirlandswirl) March 27, 2015
Basic communication–where the patient can answer the two questions posed above–is not always achieved. Being health literate is the term used to describe an extremely complicated skill set that includes conversational competence–the ability to listen effectively, articulate health concerns and explain symptoms accurately–decision making and analytical abilities. The health literate person can locate information: evaluate, analyze, interpret, and assess its quality. Being able to do mathematical calculations and judge risk are also part of health literacy. Therefore, people who are highly educated and functioning well in our society, people who are “reading literate,” may be “health illiterate.” Health illiteracy can also be situational. For example, in highly-emotional situations, such as learning of a cancer diagnosis, one’s attention narrows and focuses on the disturbing news. Less attention goes to peripheral information like the treatment plan. Additionally, the physical or psychological state one is in when learning something like a cancer diagnosis may be significantly different from when recalling that information. This can impact memory. Even under optimal circumstances, patients in these situations leave the physician’s office with only about 50% of the information that has been provided to them. Unfortunately those with low health literacy are less likely to ask questions of their physician. So, people who need more help actually receive less.
Specificity of Medication Instructions
For example: What time of day should the medicine be taken?
T2 – instructions need 2B more specific – not just take 3 x/day but WHEN and HOW #hchlitss — Patti Koblewski (@ChronicPainGPS) March 27, 2015
According to a survey conducted by the Agency for Healthcare Research and Quality, US adults fill 9 prescriptions a year and those over 65 fill over 20 a year. In a 2011 study, 464 adults were tested on how they would schedule a 7 pill regimen with a variety of times they were to take the medications. Even though 2 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.
Difficulty With the Mode of Taking the Medication
Has the patient’s skill set or health status been taken into account when prescribing the medication?
T2. Side effects, difficulty with mode of taking Rx (i.e., self-injections) or thinking that I didn’t need to take them. #HCHLITSS — Karyn B. Lee (@KBrianneLee) March 27, 2015
T2 I have #gastroparesis but am told to take my medications with food. Hmmm… #hchlitss — Melissa VanHouten (@melissarvh) March 27, 2015
Cost
Does the prescribing physician know the cost of the medication?
People who are “food insecure” 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.
@tiffanybrandlib try $400 per pill #hchlitss — Becky Bills (@planethealer) March 27, 2015
@tiffanybrandlib @anetto OMG how can anyone afford that?? $900/mo? Who has that?? #hchlitss — Darline Turner (@DarlineBedrest) March 27, 2015
Quality of Life and Side Effects
Is the prescriber familiar with the side effects? Have side effects been communicated to the patient?
T3 There are often good reason such as quality of life and burden of disease. Never a break or holiday if #chronic #hchlitss — Annette McKinnon (@anetto) March 27, 2015
@enBloomMedia I don’t take my (now expired) migraine medication often because the side effects were worse than the migraines. #hchlitss — Laurel Ann Whitlock (@twirlandswirl) March 27, 2015
T2b: #SideEffects aren’t taken seriously enough, especially nausea & vomiting. @drkdhoffman #HCHLITSS — Dawn M Gibson (@DawnMGibson) March 27, 2015
Understanding the Benefits of the Treatment Plan
Is there buy-in into the plan? Is the plan seen as necessary? Example: vaccinations?
T2 – Reasons for not taking a #medication – lack of trust, evidence #HCHLITSS — JanetCabibbo (@JanetCabibbo) March 27, 2015
Goals
Does the person with chronic illness have a goal that staying with the plan helps them achieve? For example, does the person want to be able to see their child graduate from college?
T2 Fear based on experience, concern with side effects. Distrust that prescriber does not understand my goals as a person #hchlitss — Jethro Heiko (@JethroHeiko) March 27, 2015
Research indicates the importance of treatment that incorporates goals and objectives that are personally meaningful to the patient. The technique called motivational interviewing is recommended so that healthcare providers have an understanding of what inspires, spurs and encourages their patient. Creating a treatment regime that improves the likelihood of attaining these goals becomes the ultimate purpose of medication taking.
Understanding Inserts
Does the patient need to rely on inserts for help?
E-patients were concerned about detailed patient inserts. Written as technical documents, there is significant information about potential side effects which may not be found elsewhere. For elderly individuals, the size of the type is a barrier to using the insert information as well. Being able to access this information in a plain language, large type format is essential.
@drkdhoffman @KellyRawlings The detailed patient instructions are difficult to read, not written in plain language. #hchlitss
— Stroke Tattler (@Stroketattler) March 27, 2015
Let pharma know – one needs a magnifying glass to read most package inserts- do better #hchlitss — P Mimi Poinsett MD (@yayayarndiva) March 27, 2015
Untapped Resource
When the medical and pharmaceutical communities discuss the act of taking medication with pejorative language like compliance and adherence, they lose a resource: the patient. People with chronic conditions have significant barriers to medication taking that have nothing to do with recalcitrance.
Based on #HCHLITSS Twitter Chat March 27, 2015.
i went to a chalet and forgot my metformin (twice aday 500mg)
then i realize my sugar level was the same even if i was not taking the medecine. so i stopped taking it. I still have to tell my dr but it is hard to get an appointment.