"It is not easy": Experiences of people living with HIV and tuberculosis on Tuberculosis treatment in Uganda

J Clin Tuberc Other Mycobact Dis. 2023 Jun 21:33:100385. doi: 10.1016/j.jctube.2023.100385. eCollection 2023 Dec.

Abstract

Background: Completion of tuberculosis (TB) treatment presents several challenges to patients, including long treatment duration, medication adverse-effects and heavy pill burden. WHO emphasize the need for patient-centered TB care, but such approaches require understanding of patient experiences and perceptions.

Methods: In 2020, we nested a qualitative study within a clinical trial that recruited 128 HIV-TB co-infected adults in Kampala receiving rifampicin-based TB treatment, alongside anti-retroviral therapy. A purposively selected sub-sample of 46 trial participants contributed to nine gender segregated focus group discussions. Of these, 12 also participated in in-depth interviews. Sessions were recorded, transcribed verbatim and translated from local languages into English. Thematic analysis focused on drug adverse-effects, use of self-prescribed medications and barriers to treatment adherence.

Results: Patients seemed more concerned about adverse effects that clinicians sometimes overlook such as change in urine color. Those who remembered pre-treatment counselling advice were disinclined to manage adverse-effects by self-prescription. Difficulty in accessing a medical practitioner was reported as a reason for self-medication. Obstacles to adherence included stigma (especially from visible adverse-effects like "red urine"), difficulties with pill size and number, discomfort with formulation and medication adverse effects.

Conclusion: Tailored pre-treatment counselling, improved access to clinical services, and simpler drug administration will deliver more patient-centered care.

Keywords: Adherence; Experiences; Side effects; Tuberculosis treatment.