Exploring intentional medication non-adherence in patients with systemic lupus erythematosus: the role of physician–patient interactions

Abstract

Objective Medication nonadherence contributes to worse health outcomes among systemic lupus erythematosus (SLE) patients. The underlying mechanisms which drive medication nonadherence are poorly understood. The purpose of this study is to explore possible mechanisms of medication nonadherence through eliciting patient experiences. Methods Consented adult patients with American College of Rheumatology- or Systemic Lupus International Collaborating Clinics-classified SLE were recruited. Ten semi-structured interviews were conducted across six participants. Interviews were audio recorded, transcribed, and analyzed using an iterative process. Findings were presented to an interactive public forum with SLE patients, family members and friends of patients, and health care professionals to assess validity and elaboration of the concepts developed. Results Three interrelated themes emerged from the interviews: (1) Why do rheumatologists not know more about lupus or share what they do know with their patients?; (2) Why do I have to take so many drugs and why do the drug not work?; and (3) If my rheumatologist cannot communicate with me, why should I follow the prescribed medication regime? Conclusions Our exploratory findings layout a possible underlying logic by which patients may choose to intentionally engage with medication nonadherence behaviors. Patients suggested that poor communication with their rheumatologists along with a lack of validation of their symptoms contributed to them not valuing physician recommendations. This also contributed to development of a cynical outlook and little belief that medication would improve their condition. While further work is needed to validate these findings, our preliminary work suggests that interventions focusing on developing communication skills among both patients and rheumatologists are necessary to reduce medication nonadherence.

How Can We Enhance Adherence to Medications in Patients with Systemic Lupus Erythematosus? Results from a Qualitative Study

“…Another study from New Zealand [ 17 ] provided implications that addressing patients’ concerns about side-effects may improve the relationship between the treating physician and the patient and thereby improve adherence. As in our study, results from other qualitative interview studies [ 18 , 19 , 20 , 21 , 22 , 23 ] suggested that improvements in communication between physicians and patients, making medications affordable and available, increasing the patients’ knowledge about the disease and therapeutic options, challenging the patients’ beliefs regarding medication effectiveness with well-documented evidence as well as facilitating access to healthcare, all are crucial factors that can be expected to contribute to increasing medication adherence.…”

“…Overall, our findings concurred with suggestions for interventions against medication non-adherence derived from previous studies involving patients with SLE [ 2 , 41 , 42 ] and other chronic diseases [ 43 ]. Several previous studies have described methods for enhancing adherence to medications in patients with SLE [ 16 , 17 ], some of which were qualitative studies (e.g., from Jamaica, Portugal, the United Kingdom (UK), and the United States (US)) [ 18 , 19 , 20 , 21 , 22 , 23 ], while others explored and evaluated specific interventions in patient groups [ 44 , 45 , 46 , 47 ]. Improved communication between the healthcare and patients along with increased information about the rationale for taking the medication as well as less complicated medication regimens improved adherence in an American study [ 16 ].…”

“…Explaining to the patients how taking a specific drug will benefit them and communicating information about the potential side-effects of the drug have been shown to be important elements, as have providing in-depth information about the disease [ 16 , 17 ]. In this respect, well-informed patients may acquire more positive beliefs on medications and make grounded shared decisions together with their physician, which they are more inclined to follow [ 18 , 19 , 20 , 21 , 22 , 23 ].…”

Development of a digital toolkit to improve quality of life of patients with systemic lupus erythematosus

“…Priorities of stakeholders suggested a need to focus on nutrition and patient–provider communication (content) and use of digital technologies, specifically a web-based platform (intervention methods), which was aligned with our previous work in this area. 23 , 34 , 35 …”

Análise da influência das habilidades de comunicação na empatia do médico, satisfação com o cuidado e confiança no profissional percebidas pelo paciente

“…Adesão ao tratamento é definida pela OMS como o quanto o comportamento de uma pessoa -tomar medicações, seguir uma dieta e/ou realizar mudanças de estilo de vida -corresponde às recomendações acordadas com o profissional de saúde 88 . Em se tratando de condições crônicas, as medidas de adesão a tratamentos, em especial a medicamentos, são frequentemente reportadas como baixas, em geral em torno de 50,0% 88 , chegando a valores menores em casos de doenças crônicas de manejo mais complexo, como o lúpus eritematoso sistêmico 89 . Há no uso do termo adesão uma indistinção entre diversos tipos de comportamento como pessoas que não renovam suas prescrições, que esquecem medicamentos ocasionalmente, que usam regularmente mas em doses menores que a prescrita, que usam a medicação esporadicamente ou que interrompem completamente o uso 90 .…”