Background Macedonia has a social healthcare lagging behind all European countries (1). Patients with RA have average DAS28 of ∼5.2, one of the highest in Europe (2,3). The government funding is limited, only ∼$730K/y is allotted for medicines for patients with RMDs. There is a centralized access; no rheumatologists outside the capital. The average dose of MTX is <13.5mg/week; use of combination therapy <5%. Biological therapy is restricted to only 109 doses/y (3,4); anti-TNF is not available. There's a lack of many DMARDs. Even in such environment where medical therapy is scarce and limited, rheumatologists point out that patients often refuse to take or interrupt the prescribed medicines. As a patient NGO, we've also observed noncompliance by patients for the prescribed therapy. In addition there was no research initiative to determine these barriers by neither the medical community nor the institutions. Thus, we as a patient NGO took the research initiative in collaboration with a rheumatologist from the University of Michigan.
Objectives The research aims to determine barriers for therapy application. The research outputs serve for legal policy development aimed for the institutions & medical community, i.e. strategic nationwide solutions; helps us identify other patients' needs.
Methods We conducted a quantitative research survey with a representative sample of 200 patients with RA, via scheduled ∼40 min. telephone interview of 50 questions in 6 chapters: demographics, diagnosis, therapy, logistics, doctor-patient relations & other. Candidates were pre-screened for enrollment, i.e. fulfilling the requirements for disease longevity, demographic, medical history, and other factors which the research takes as necessary. The participants were randomly selected from a database of ∼500 RA patients demographically evenly distributed. Results are analyzed by a non-bias third-party analyst.
Results In Macedonia, this was a first study of the perceptions & experiences of RA patients about the therapy. Results show that education about medicines is one of the unmet patient needs; 27% answered that they would like more education about their condition & medicines. 39% answered that in some degree they are afraid from the side effects of the medicines, i.e. pointing out that the medicine package insert is often their only means of information about the medicines.
Conclusions The lack of medicine may be the biggest barrier, e.g. less available therapy poses difficulty acquiring it, leading to fewer choices, poorer treatment options and outcomes, thus lower patient enthusiasm and interest for its use. Education about medicines, i.e. understanding how they work, their delayed effects & side effects, are also a barrier. Other barriers: patients' financial burden, travel, insufficient doctor-patient relations & appointment time; poor healthcare, centralization, etc. The research provided other significant data being analyzed. The research helped us identify education programs & projects, e.g. in Jan. 2015, we were awarded a $13.900US grant by ILAR, to publish, print and disseminate material nationwide for patient education on medicines.
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Sokka T. et al. Ann Rheum Dis (2007) 66:1491–1496
Ognenovski, V. et al. ILAR Clin Rheumatol (2013) 32:1669-1671
Putrik, P. A&R (2012) vol. 64, Abstract Supplement
Disclosure of Interest None declared