Background: Engaging patients in the systematic review (SR) development may provide valuable input and make it more trustworthy and relevant for practice.
Objectives: To point out the importance of considering the perspectives of patients in SR development, which are sometimes different from those imagined by healthcare professionals.
Methods: We report the results of a patient interview, which is part of an ongoing network meta-analysis about chronic obstructive pulmonary disease (COPD) adherence-enhancing interventions. It was performed before searching the literature using a semi-structured guideline. We used qualitative analysis software (MAXQDA®) following the Kuckartz method of inductive coding and quality criteria. Subsequently, the findings were incorporated into the logical models prepared in the protocol before the interview (system-based and process-oriented logic models).
Results: We interviewed 14 heterogeneous patients with COPD (age 67.7 ± 6.8 years, 10 females). Overall, the coders identified 321 content-bearing codings. Following the research question, five thematic categories were formed, each comprising three to four sub-categories (Table 1). Across the categories, patients described controlling symptoms, a well-structured daily routine, understanding of illness, availability of high-quality and correct information, digital health, effective communication with doctors, transparent management strategy, reminding techniques, physical exercise, and social network as promoting adherence. Medical training, like inhalation technique, was considered one of the most important adherence-promoting measures. Quality of life (QoL) was considered an essential outcome, which was even preferred over mortality. Conversely, they believed that negative thoughts and bureaucracy in healthcare systems might reduce medication adherence. The feedback was incorporated into the logic models. Across both models (Figure 1 and 2), they suggested including physical exercise and social-cultural engagement for adherence components, and adding the internet, health insurance companies, and self-help groups as part of the intervention. They also suggested outcomes like rapid symptom control, immediate improvement in QoL, and reaching individual goals.
Conclusions: Involving patients in SR development can provide a valuable perspective on the topic that medical professionals may have yet to recognize. Their insights can help to ensure that the review is more relevant for the patients and thus health care decision-making. Patient, public, and/or healthcare consumer involvement: We involved patients with COPD.