Measuring medicine-related burden in HIV care
Research type
Research Study
Full title
Evaluation of medicines use experiences among people living with HIV in areas of Kent and Medway
IRAS ID
250588
Contact name
Barbra Katusiime
Contact email
Sponsor organisation
University of Kent
Duration of Study in the UK
0 years, 3 months, 31 days
Research summary
Medicines are widely used by people living with HIV chronic infection (PLWH), and 96% of this population uses antiretroviral medicines. Increased access to HIV treatments contributes to more people living longer with other long-term conditions.
Although clinically beneficial, using multiple, life-long, drug combinations, poses several challenges for individual patients. PLWH may spend time and effort organizing their care, attending different appointments and planning medicines use.
While some fear running out of medicines, others may be concerned about long-term side effects, pill burden, psychosocial issues, particularly stigma. For most individuals prescribed HIV treatments, strict adherence to dosing regimens leaves limited flexibility and may interrupt day-to-day activities and social life. Research efforts are needed to explore the burden associated with using medicines in the context of chronic HIV-infection.In this study we will identify the kind of medicine issues that affect PLWH. To do this, we need a sample of people to complete a specially designed and validated questionnaire, developed entirely from the patient perspective, the Living with Medicines Questionnaire© (LMQ-3) and another generic measure of illness-related stigma. We will therefore ask adult patients (18 years or older), living in England, using antiretroviral medicine to complete these questionnaires. We plan to recruit patients from HIV clinics through a community trust serving areas of Kent and Medway. One undergraduate student will visit the clinic at a time agreed by the pharmacist; the student or pharmacist will screen potential patients for eligibility after they have attended their consultation.
Eligible participants will be asked to complete the questionnaires after clinic appointments and return them by hand to students or return them in a prepaid, free-post, envelope at a later date if they prefer. All questionnaires will be anonymous, and ask general questions about patients' medicine-related experiences and do not ask details about HIV status or the anti-retroviral regimen.
REC name
North East - Newcastle & North Tyneside 2 Research Ethics Committee
REC reference
18/NE/0321
Date of REC Opinion
5 Oct 2018
REC opinion
Favourable Opinion