The Burden of Caring for and Treating Glaucoma: The Patient Perspective

Abstract

Purpose: To understand the treatment burden experienced by patients receiving care for primary open-angle glaucoma.

Design: Semistructured, one-on-one, qualitative interviews.

Participants: Patients with primary open-angle glaucoma and age ≥40 years who were scheduled for a follow-up glaucoma appointment at the Kellogg Eye Center. Researchers used purposeful sampling to ensure that there was representation of a range of ages, disease stages, total number of medical conditions, distance traveled to clinic, history of glaucoma surgery, employment, and education. Interviews were conducted until thematic saturation was obtained.

Methods: Participants were interviewed using a semi-structured interview guide that addressed aspects of glaucoma care that give them burden, how this burden impacts their lives, and factors that influence the burden and its impact. Researchers analyzed the transcripts using inductive thematic analysis and grounded theory to generate themes that emerged from the interviews and to map these themes into a conceptual model of glaucoma treatment burden.

Main outcome measures: Themes related to glaucoma treatment burden generated by qualitative analysis.

Results: A total of 22 patients participated in the study. Study participants described 10 categories of glaucoma care activities that cause treatment burden, 8 themes for consequences of glaucoma treatment burden, and 25 themes of factors that influenced the workload created by the various glaucoma care activities and the consequences that they experienced because of these activities.

Conclusions: Participants expressed that the treatment of glaucoma creates a burden for patients that is distinct from the burden of the disease process itself and that this burden negatively affects their quality of life and can potentially cause vision-threatening issues with medication and appointment adherence. We observed considerable variation in the extent to which participants experienced this burden and its consequences, much of which was explained by the influencing factors the participants described. Understanding glaucoma treatment burden and its influencing factors is important as we work to deliver patient-centered care and prevent vision loss.

Keywords: Adherence; Follow-up adherence; Glaucoma; Medication adherence; Qualitative research; Quality of life; Treatment burden..