gms | German Medical Science

Background/research question: Engaging patients in systematic review (SR) development may provide valuable insight and makes it more centred on patient care.

We aim to present an approach for incorporating the perspectives of patients with chronic obstructive pulmonary disease (COPD) in SR production and our first experience of applying it.

Methods: We performed two focus group interviews with COPD patients as part of a component network meta-analysis on COPD adherence-enhancing interventions. We analysed the interviews using qualitative content analysis following the Kuckartz method via (MAXQDA^®) software. We ran the first interview before searching the literature. Subsequently, we incorporated the findings into two logical models (system-based and process-oriented logic). We conducted the second interview after synthesising the evidence. The findings were used to inform the applicability assessment and the discussion of the SR.

Results: We interviewed 14 heterogeneous patients (age 67.7±6.8 years, 10 females).

In the first interview, we summarised the patient viewpoints in five thematic categories. The adherence-enhancing factors were symptom control, understanding of illness, availability of correct information, digital health, effective communication, transparent management strategy, reminding techniques and physical exercise. The patient considered the inhalation technique an important measure and Quality of life an essential outcome, even preferred over mortality. In contrast, negative thoughts and bureaucracy in healthcare systems were considered as barriers. The patients suggested including physical exercise and social-cultural engagement as components and adding the internet, health insurance companies, and self-help groups as part of the intervention.

In the second interview, we developed six codes summarising patient views about adherence measurements. The interview helped clarify which interventions are applicable in practice, understand why some interventions work better than others, and identify patient-relevant research gaps. It revealed that patients prefer personal contact and consider education and counselling essential.

Conclusion: Involving patients in the SR development can ensure that the research question, methods, outcomes and recommendations for practice align with their needs and thus improve the relevance of results. Our approach has provided valuable insights and is a feasible and transparent way to include patient perspectives in the SR preparation and interpretation.

Competing interests: No conflicts to declare.