Non-compliance from the Pediatric and Adolescent Medicine Perspective

Dr. Fran Cogen Health Pro
  • Not only do I have the opportunity to participate and write blogs for this site; but I also peruse the diabetes site and learn from my co-bloggers.  Today I read a blog written by one of our colleagues discussing "non-compliance" in terms of the doctor-patient relationship. I am aware that this blog related primarily to adult patient-doctor relationships; but I think there was enough discussion to merit "noncompliance" from the pediatric perspective. My psychosocial colleagues have suggested that we eliminate the term noncompliance and replace with "non-adherence." There is an important subtle difference. Non-compliance implies that the patient/family is willingly not complying with the suggested care plan; whereas non-adherence suggests that the patient/family is having difficulty with the suggested care plan. 

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    Several of the comments appropriately pointed out that not enough time is spent with the doctor/diabetes team to define a mutually agreeable treatment plan. Clearly this is a major problem with our present healthcare system. So, how can we, as diabetes healthcare providers, prevent ourselves from non-compliance as mentioned in one of the comments (or rather non-adherence) given the time-constraints that plague our attempts to provide the best health care?


    Clearly, the answer must lie in teamwork. To get the most information out of our visits together, the child/teen/caregiver must come to the appointment prepared with an agenda. During the visit, the healthcare provider will discuss the objective information gleaned from blood sugars, physical examination, and laboratory evaluation. It is then expected that the patient/family discuss issues pertinent to their concerns as well as clarify the information presented during the office visit. Communication between patient/family and physician/diabetes team is essential. There is a significant amount of "give and take" during these visits and care plans are negotiated between the patient/family and healthcare provider.  At the conclusion of the visit, we generally hammer out two to four goals that have been mutually agreed upon by the child/teen and responsible caregiver.


    For example:

    1. Try to test blood sugars minimally four times/day
    2. Try to bolus before meals and snacks as much as possible
    3. Try to change pump catheters at least every two to three days

    We will then mutually agree upon insulin dose adjustments and ensure that everyone understands what has transpired during the visit.  How much time do I have to discuss the above? At Children's National, I schedule patients 20 minutes apart, so our team can weigh and measure, take vital signs, obtain lab work, and download meters. I then meet with the families and take as much time as is necessary. Sometimes the visit lasts 10 minutes and sometimes as long as 40 minutes depending on the needs and concerns of my patient/family. And yes, people are sitting in the waiting room and waiting...


    What is Non-adherence? And who is non-adherent? Is it the child/family unable to succeed in the mutually defined goals at the last visit? Is it the diabetes healthcare team unrealistically expecting the goals to be met?  I believe the term "non-adherence" should be applied when there is some impediment to the process toward success. Clearly, if the patient/family is trying hard to reach the aforementioned goals and puberty gets in the way with unpredictably high blood sugars, this is not non-adherence/non-compliance.  However, if the teen is having difficulty testing blood sugars such that he is not checking at all, we have a problem that places him at great risk. His non-adherence is a clue that there is an underlying problem interfering with performance of necessary self-care tasks.  We could say, "this is his body, his life, and that he can do whatever he likes." However, as pediatric healthcare providers, we must try help these young people to take care of themselves so that they may be self-empowered in the future as adults.


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    Non-compliance (or non-adherence) denotes negativity. I, myself, fall prey to this implication and struggle daily to remind myself that we must try to find the underlying reason for the non-adherence behavior and not be judgmental. And what is my culpability for non-adherence as a physician? I am "non-adherent" when I do not attend to the needs of the patient and family. Sometimes, these needs are not readily apparent and I must explore more fully, taking even more time. Sometimes, I fail to determine the "hidden agenda" or what is really going on, thus preventing my patients from reaching mutually defined goals.


    In my view, what is most important is to keep trying to communicate and leave the doors open for further communication if everything is not clear at the end of the office visit. Treatment goals may be renegotiated between physician/diabetes team and patient/family and then tweaked once again. Failure to understand that process is paramount in defining mutually agreeable goals and expectations will unjustly lead to use of the word noncompliance.


Published On: October 07, 2009