Understanding Non-Adherence: A Qualitative Study

Background: A variety of studies have pointed out the adherence problems with non-symptomatic maintenance therapies. The use of statins for hyperlipidemia has received particular attention. Adherence rates as low as 50% after six months have been reported. Most of the research about the causes of non-adherence has focused on the individual patient. Objectives: The purpose of this study was to interview patients and their significant others on their experience with statin use. Patients were asked to bring along one adult person who was in their intimate system; ie spouse, adult children, sister, brother, etc. Patients and significant others were interviewed both together and separately in a total of ten focus groups representing two different clusters of patients: adherent (defined as taking the recommended dosage of medicine for more than 6 months) and non-adherence. The patients and significant others were interviewed separately to ascertain the two different perspectives. All focus groups were videotaped and transcriptions were made for each group session. To eliminate bias, various approaches to analyzing the focus group information were utilized including consensus judgment, critical theory and content analysis using NVivo 7 by a researcher who was not part of the consensus or critical theory discussions and who had not witnessed the focus groups. Conclusions: 1. All groups were more adherent than would have been predicted by the literature. Switching medications is common and may be misinterpreted as non-adherence. This finding questions the definition of adherence that is commonly employed. 2. A statin is added to not only an individual's routine but also to a household value system. This affects how the hyperlipidemia and the statin are positioned within the household culture. Household members take different roles in relating to the patient: investigator, encourager, helper, nag. If a patient is non-adherent (statin, activity, diet) the frustration of the significant other builds. This frustration moves through several common phases ending in resignation and silence with accompanying withdrawal of intimacy. Eventually, talking about adherence issues becomes taboo. 3. Statins are viewed as a “quick fix” and may reduce the experienced need for diet and activity modification if the statin is producing the desired changes in the lipid profile. Ignorance is pervasive: impact of high cholesterol, pharmacodynamics of statins. More research is needed on defining and identifying true non-adherent patients, the role of the intimate system to promoting adherence, and how to provide informational and relational support to increase adherence.