Self-Adjusting Long-Term Medications: A Qualitative Descriptive Study of Patients’ Practices

BACKGROUND: In response to challenges related to medication management, patients may modify their long-term medication regimens by adjusting doses, changing intake frequency, or temporarily interrupting treatment, often without consulting healthcare providers. While literature on non-adherence is extensive, research on the specific mechanisms and motivations behind medication self-adjustment remains limited. OBJECTIVE: This study explored how and why patients adjust their medication without prior consultation with healthcare providers. METHODS: In 2022, we conducted semi-structured interviews with 30 ambulatory patients with chronic diseases who had self-adjusted their medications without consulting a healthcare provider. The qualitative analysis used a low-inference approach to provide an in-depth description of patients' experiences. We used MAXQDA 24.6.0. KEY RESULTS: Participants reported various self-adjustment techniques, including skipping doses and temporarily interrupting treatment. Adjustments were guided by physical sensations or intuitions, using the body as a compass. Personal experience could take precedence over medical recommendations, and self-adjustments were seen as a necessary process of experimentation, allowing individuals to better understand the effect the medication had on their bodies. This process was accompanied by ambivalent emotions such as freedom and empowerment, as well as guilt. Participants also established personal hierarchies regarding the importance of medications, shaped by the length of time since treatment was introduced, perceived consequences of discontinuation, and the clinical context in which the prescription was initiated. CONCLUSION: Adaptation of long-term prescriptions without input from healthcare professionals may pose risks to patients. These findings highlight that patients need guidance to adjust their treatment in a safer and more informed way. Strengthening patient education and fostering open dialogue are needed to help align medical decisions with individual expectations and increase trust. Future research should evaluate the implementation of collaborative care frameworks to guide practices towards a more patient-centered approach to ensure safe and effective medication management.