Sixty-three people were contacted to participate in the study. Sixteen declined to take part in the study and 13 were not located when organizing focus groups. Finally, 36 people took part in five focus groups (19 females, 17 males) between December 2014 and February 2015. Study subjects were aged 39–90 years (mean 65 years) and the mean number of comorbidities per patient was 2.3 (range 1–7). Participants’ conditions are shown in Table 1.
Below, we present a brief review that offers some insight into what life with chronic conditions involves, and how patients’ adherence perception is affected by its constructs. We structured the results of the focus groups into three major topics: patients’ health beliefs, patients’ health experiences, and patients’ health behaviors related to medication adherence and therapeutic attitudes. Table 2 lists a summary of the factors identified in our study that impact on medication adherence with representative quotations of study participants.
Patients’ Health Beliefs
Patients with multimorbidity had the perception of a main disease (that which most affects their quality of life or threatens survival) and the rate of medication adherence to treat it was usually higher. On some occasions, patients made decisions based on their own perceived effect of the drug. The beliefs that affected medication adherence and were expressed by study participants were concerning drugs, drug prescription, expectancies of treatment effectiveness, and relative to non-pharmacologic therapies.
Some study patients expressed beliefs that led them to non-adherent conducts such as considering drugs as chemicals or toxic products and that they create a vicious cycle, and a confidence in spontaneous organic recovery without treatment.
Study participants showed a clear preference not to take any medication, but they accepted it with a certain feeling of defeat and resignation. They considered that medication was often prescribed routinely and that health professionals did not contemplate possible changes in health status so as to reduce drug dose. They felt that in some way, a drug prescription was a consequence of a lack of time or resources for other types of treatments. Some of them identified the pill burden as a trend imposed by the health system as an alternative to tailoring treatment. Polymedicated patients wanted to prioritize drugs regarded as essential for survival and to maintain a good quality of life. From their point of view, doctors should review their medications regularly to see whether they are still necessary. Patients also disagreed with the responsibility transfer currently occurring in healthcare; they felt disease was attributed as their fault due to a lack of preventive measures and self-care activities. Adherence behavior was also influenced by patient’ expectancies of treatment outcomes. Although, many study subjects were conscious their illness could not be cured, they expected an improvement in their quality of life. Consequently, despite initial skepticism and reluctance, if their perception of their health status was good, their trust in treatment was solid.
Although this was not a general opinion, some participants commented on the possible use of non-pharmacologic therapies. They called these therapies complementary or alternative depending on their confidence in drugs. In some cases, the use of these therapies was due to the subjective perception of drug ineffectiveness and worsening of patient’s quality of life.
Patients’ Health Experiences
The vast majority of study patients highlighted the importance of the prescriber–patient relationship. Patients’ trust in treatment could vary depending on how they perceived the prescriber’s attitude, especially in the initial phases. Once mistrust was established, patients were more likely to adopt skeptical attitudes and non-adherent behaviors. Study participants also pointed out the persistence of a paternalistic model in the doctor–patient relationship, known to be one of the main barriers for patients to acquire responsibility for their medication. They considered that specialists had excellent clinical skills, but lacked empathy towards patients. They also felt a lack of therapeutic negotiation during medical visits. In other words, patients wanted to take some responsibility for their medication under guidance of their physicians so some of them considered therapeutic alliance a good strategy to empower them.
Study patients especially appreciated a treatment that could increase their autonomy. They stated that when suffering from a chronic illness the conciliation between medication and their daily life influences therapeutic adherence, especially in patients with low comorbidity because of constant journeys to healthcare centers. Patients also worried about the impact of treatment on their professional careers and family life.
In our study population, patients’ perception of disease control appeared to motivate medication adherence especially in patients with high comorbidity. Body-listening, related to the response of symptoms, was an important part of this process, the ‘guiding light’ through which it is possible to determine if the patient’s treatment experience is good or must be changed. Each participant faced multiple and diverse challenges in order to balance the prescribed regimen with physical and psychosocial wellbeing whilst trying to maintain quality of life. If treatment duration was long and if patients did not perceive therapeutic effectiveness their motivation could decrease and thus their adherence to treatment. This was especially significant in those patients suffering from several comorbidities. Furthermore, treatment characteristics such as dosage form, pill burden and presence of adverse effects could modify therapeutic conduct. Those treatments that affect physical appearance (for instance, increasing body weight) were reported by some female participants to be causes of non-adherence. Therapeutic complexity was also identified as a cause of non-intentional non-adherence by patients with polypharmacy and high level of comorbidity.
Study participants also stressed the importance of patient’s education and claimed that more complete information would improve therapeutic adherence. Most patients said that a lack of knowledge about how drugs work and their adverse effects increased their fear of the nature of the drugs and their distrust in medicine. As a result, information was identified as a central element that allows patients to deal better with their illness. Patients took great value from explanations given by health professionals as to how their drugs worked as this helped to increase their confidence in the treatment. Generally speaking, patients showed a clear interest in being involved in decision-making throughout the therapeutic process if they received adequate information.
Family and social support were very important for many patients because they helped in illness control. This support was expressed in terms of accompaniment and not helping in the administration of drugs. Sometimes this support came from patients in similar situations. Contrary to the majority, one participant reported that today’s society expected chronic patients to lead a normal life even if their body did not allow them to.
Patient’ Health Behaviors
In this study, we identified three attitudes to therapy: responsibility, prevention, and defeat. The attitude of responsibility was expressed by some female patients and by a need to have a more proactive role in the management of their health status. We also observed that when a patient is also a caregiver, this attitude is dominated by surveillance of the other person’s medication adherence rather than that of self. Many other patients showed a prevention attitude that was strongly linked to a desire to prevent future complications and to maintain a good health status. This was more common in women, and also in men with polypharmacy or with high functional impairment. Patients with this attitude also tended to have a more active role in their own care. Only few patients (those with AIDS and epilepsy) had a defeatist attitude and this was determined by the high level of social stigmatization associated with these diseases that led to not accepting the disease. This attitude might account for the lack of adaptation to therapeutic routine and the commitment and the self-sacrifice needed for following a treatment. Consequently, it could lead to a suboptimal adherence.
In our study, collaborating actively to achieve a better health status appeared to generate greater security among patients. Participants with healthy lifestyles and habits tended to have adequate conduct towards medication. Therefore, patients’ motivation could enhance medication adherence.
Suggestions for Improving Medication Adherence
Participants were also asked what helped them to follow a treatment or improve medication adherence (Table 3). Most of the suggestions were centered on improving patients’ education and the relationship or the attention they received from their prescriber. Participants also complained about the little attention given to mental health status in medical visits. They sought greater clinical support concerning emotional aspects and would like a holistic approach, taking their preferences and family context into account.