The myth of lack of adherence

Cristina Roure

It's not that they don’t know or don’t want to know, it's that they can’t

I recently read of a doctor complaining that when he began his career, he assumed that if a disease was treated, the patient would improve, but in reality the results were far from expectation. It isn’t surprising if we remember that adherence to advice and treatment in chronic patients is less than 50%, as shown by a recent survey conducted in Spain in a sample of 1,400 chronic patients.

Despite attempts to change the attitude and pardon the patient, such as calling those that don’t comply or adhere, the truth is that systems to increase adherence to treatment always focus on changing patients’ attitudes or aptitudes. Lack of adhesion is rarely viewed as a system problem.

Chronic disease overwhelms the lives of people who not only struggle with the symptoms of the disease: fatigue, functional limitation, pain, etc but they also have to take care of themselves and often others, attend countless appointments, make multiple efforts and must know how to organize themselves to comply with complex treatments whilst at the same time having to change lifestyles and habits built over years.

Treatment overload is defined as the impact that "the work of being a patient" has on the quality of life and the functional well-being of people. Researchers from the University of Paris quantified the potential overload, simulating the application of the Clinical Practice Guidelines (CPG) in force in a patient with between one and six highly prevalent chronic diseases (1). Accordingly, patients with 3 chronic diseases, to comply with the CPG, would have to take between 6 and 13 medications, go to 1.2 -5.9 visits per month, in addition to dedicating an average of 49.6-71 hours a month to meet the health demands according to the combination of diseases that they suffer from.

It seems natural to think that a doctor or a nurse can take care of a limited number of patients. However, each of the multiple professionals who care for a patient prescribe the treatments that are considered cumulatively indicated, without thinking of the patients' ability to understand, organize and execute the multiple prescribed activities and who must also manage to fit in the rest of the burden of life, an ability that is also limited, especially when one is ill and elderly. Not much attention is paid to whether the burden imposed is disproportionate in relation to the resources they can mobilize, or whether their physical, mental or financial capacity is sufficient to meet all these demands. I recommend that you take a look at a qualitative survey conducted on 1,053 chronic patients that explores, describes and classifies the components of treatment overload, what the consequences are for the patients’ lives and what factors aggravate or alleviate this overload (2 ).

Given such a disproportion between charges and capabilities, people can react in various ways: they may prioritize the demands of life, and abandon self-care and adherence to treatment, or prioritize health care and self-care at the cost of introducing a disruption in their lives that separates them from other activities or relationships that were a source of emotional well-being and therefore important for them. In any case, the result is negative in terms of wellbeing and health and, in the face of failure, the system tends to respond with an intensification of treatment and, therefore, further disrupting the fine balance between burdens and capacities.

Wouldn’t it be more realistic, and also more effective, to diagnose the capacity and workload of the patients and their environment; know and understand what their health and life goals are, in order to prioritize those interventions, sanitary or not, that would bring them closer to these objectives and also cause minimum disruption in their lives?

It seems that, in its efforts to alleviate illness, disability and postpone death, modern medicine has become over-medicated. There is a tendency to treat not only the disease but also the risk with drugs or technology, with less effort to change habits, environmental or socioeconomic factors, or to assess and compensate for gaps and overloads of life that pose a barrier to access, or that condition the use that people make of the health system.

We must search into the emotional and social aspects, such as poverty or loneliness, if we want to get to the root of the lack of adherence and health outcomes. See, for example, how primary care physicians from the Centre for Effective Practice in Ontario have developed a tool called "Poverty Tool" to systematically screen and identify patients at risk of poverty and intervene by connecting them with the necessary resources: 

Technology and science can develop in giant steps in the world of laboratory and clinical trials, but such advances will not improve the health status of people if we don’t address the barriers they face in the real life and find a balance between charges and capabilities. 

I like concepts such as minimally disruptive medicine, or realistic medicine, which defend slogans as beautiful as doing everything possible for the patient and as little as possible to the patient, or reducing the health footprint over people's lives.


Bibliography:

1. Buffel du Vaure C, et al. Potential workload in applying clinical practice guidelines for patients with chronic conditions and multimorbidity: a systematic analysis. BMJ Open 2016;6:e010119 doi:10.1136/bmjopen-2015-010119.

2. Tran et al. Taxonomy of the burden of tratment:  multicountry web-based qualitative study of patients with chronic conditions. BMC Medicine 2015; 13:115.