Exploring the experiences of people in Ontario, Canada who have trouble affording medicines: a qualitative concept mapping study

Hannah Yaphe, Itunuoluwa Adekoya, Liane Steiner, Darshanand Maraj, Patricia O'Campo, Nav Persaud, Hannah Yaphe, Itunuoluwa Adekoya, Liane Steiner, Darshanand Maraj, Patricia O'Campo, Nav Persaud

Abstract

Objectives: The experiences of people who report cost-related medicine non-adherence are not well documented. We aimed to present experiences relating to accessing medicines reported by the participants in a randomised controlled trial of free medicine distribution.

Methods: The trial consisted of primary care patients from a large urban family practice and three rural family practices who reported cost-related medicine non-adherence. Participants were randomly allocated to continue their poor access (control) or to receive free and easily accessible medicines (intervention). As part of data collection for the first year of the trial, participants were asked closed and open-ended questions to assess their adherence to medication, health outcomes and their experiences in relation to medicine accessibility. We conducted a qualitative concept mapping study in which we analysed and summarised participants' responses to the open-ended question on a concept map to visually present their experiences relating to accessing medicines.

Results: Of the 524 trial participants contacted, 198 (38%) responded to the open-ended question. The concept map contains clusters that represent eight types of experiences of participants related to medicine access including stress, relationship with doctor, health impact, quality of life, sacrificing other essentials, medicines are expensive, financial impact and adherence. These experiences fall under two major themes, experiences relating to personal finances and experiences relating to well-being, which are bridged by a central cluster of adherence.

Conclusions: The experiences shared by the participants demonstrate that access to medicines impacts people's finances and well-being as well as their adherence to prescribed medicines. These results indicate that effects on personal finances and general well-being should be measured for interventions and policy changes aimed at improving medicine access.

Trial registration number: This article is linked to the Carefully Selected and Easily Accessible at No Charge Medicines (CLEAN Meds) randomised controlled trial (trial registration number: NCT02744963).

Keywords: cost-related medicine non-adherence; family medicine; health policy; medicine access; pharmacare.

Conflict of interest statement

Competing interests: None declared.

© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.

Figures

Figure 1
Figure 1
Concept map showing participant experiences relating to medicine access. The map represents eight types of experiences of participants related to medicine access. Two overarching themes emerged from the organisation of clusters on the concept map. Clusters on the left side of the map represent experiences related to personal finances while clusters on the right side of the map represent experiences related to well-being. Statements pertaining to medicine adherence seem to sit between these two groupings, suggesting that sorters regularly connected adherence to other concepts within both affordability and well-being.

References

    1. Bowry ADK, Shrank WH, Lee JL, et al. . A systematic review of adherence to cardiovascular medications in resource-limited settings. J Gen Intern Med 2011;26:1479–91. 10.1007/s11606-011-1825-3
    1. Lexchin J, Grootendorst P. Effects of prescription drug user fees on drug and health services use and on health status in vulnerable populations: a systematic review of the evidence. Int J Health Serv 2004;34:101–22. 10.2190/4M3E-L0YF-W1TD-EKG0
    1. Law MR, Cheng L, Dhalla IA, et al. . The effect of cost on adherence to prescription medications in Canada. Can Med Assoc J 2012;184:297–302. 10.1503/cmaj.111270
    1. Osterberg L, Blaschke T. Adherence to medication. N Engl J Med 2005;353:487–97. 10.1056/NEJMra050100
    1. Morgan SG, Boothe K, Universal prescription drug coverage in Canada: long-promised yet undelivered. Healthcare management forum. Los Angeles, CA: SAGE Publications Sage CA, 2016.
    1. Goldsmith LJ, Kolhatkar A, Popowich D, et al. . Understanding the patient experience of cost-related non-adherence to prescription medications through typology development and application. Soc Sci Med 2017;194:51–9. 10.1016/j.socscimed.2017.10.007
    1. Piette JD, Heisler M, Horne R, et al. . A conceptually based approach to understanding chronically ill patients’ responses to medication cost pressures. Soc Sci Med 2006;62:846–57. 10.1016/j.socscimed.2005.06.045
    1. Norris P, Tordoff J, McIntosh B, et al. . Impact of prescription charges on people living in poverty: a qualitative study. Research in Social and Administrative Pharmacy 2016;12:893–902. 10.1016/j.sapharm.2015.11.001
    1. Omojasola A, Gor B, Jones L. Perceptions of generic drug discount programs among low-income women: a qualitative study. Women's Health Issues 2013;23:e55–60. 10.1016/j.whi.2012.10.002
    1. Kirby M. Mental health in Canada: out of the shadows forever. Can Med Assoc J 2008;178:1320–2. 10.1503/cmaj.071897
    1. Kirby MJ, Keon WJ, Canada. Parliament. Senate, Standing Committee on Social Affairs SaT . Out of the Shadows at Last: Transforming Mental Health, Mental Illness and Addiction Services in Canada: Final Report of the Standing Senate Committee on Social Affairs, Science and Technology Mental Health, Mental Illness, and Addiction. LbThe Senate, lc2006, 2006.
    1. Bayoumi AM, Strike CJ. Making the case for supervised injection services. The Lancet 2016;387:1890–1. 10.1016/S0140-6736(16)30308-7
    1. Shum D. Toronto opens permanent supervised injection site in downtown core, 2017. Available:
    1. Bruemmer R. Three safe-injection sites Approved for Montreal, 2017. Available:
    1. Canada (Attorney General) v PHS Community Services Society S, 2011. SCC 44 (CanLII).
    1. Small D. Canada’s highest court unchains injection drug users; implications for harm reduction as standard of healthcare. Harm Reduct J 2012;9:34 10.1186/1477-7517-9-34
    1. Persaud N, Lee T, Ahmad H, et al. . Protocol for a randomised controlled trial evaluating the effects of providing essential medicines at no charge: the carefully seLected and easily accessible at no charge medicines (clean Meds) trial. BMJ Open 2017;7:e015686 10.1136/bmjopen-2016-015686
    1. Persaud N, Bedard M, Boozary A, et al. . Effect of distributing essential medicines at no charge on adherence: the CLEAN Meds randomized clinical trial. JAMA Intern Med 2019. 10.1001/jamainternmed.2019.4472. [Epub ahead of print: 7 Oct 2019].
    1. Jackson KM, Trochim WMK. Concept mapping as an alternative approach for the analysis of open-ended survey responses. Organizational Research Methods 2002;5:307–36. 10.1177/109442802237114
    1. Persaud N, Davidson M, Charter D. Community members co-designing a trial of medication access. Can Med Assoc J 2018;190:S44–5. 10.1503/cmaj.180415
    1. Ally M, Woods H, Adekoya I, et al. . What is the acceptability of free access to a short list of essential medicines to patients and their prescribers? a mixed methods study of trial participants. In Press 2019.
    1. Bar H, Mentch L, R-Cmap ML. R-CMap—An open-source software for concept mapping. Eval Program Plann 2017;60:284–92. 10.1016/j.evalprogplan.2016.08.018
    1. Eton D, Ramalho de Oliveira D, Egginton J, et al. . Building a measurement framework of burden of treatment in complex patients with chronic conditions: a qualitative study. Patient Relat Outcome Meas 2012;3:39–49. 10.2147/PROM.S34681
    1. Goins RT, Williams KA, Carter MW, et al. . Perceived barriers to health care access among rural older adults: a qualitative study. The Journal of Rural Health 2005;21:206–13. 10.1111/j.1748-0361.2005.tb00084.x
    1. Sav A, Kendall E, McMillan SS, et al. . ‘You say treatment, I say hard work’: treatment burden among people with chronic illness and their carers in Australia. Health Soc Care Community 2013;35 10.1111/hsc.12052
    1. Heisler M, Wagner TH, Piette JD. Patient strategies to cope with high prescription medication costs: who is cutting back on necessities, increasing debt, or underusing medications? J Behav Med 2005;28:43–51. 10.1007/s10865-005-2562-z
    1. Bengle R, Sinnett S, Johnson T, et al. . Food insecurity is associated with cost-related medication non-adherence in community-dwelling, low-income older adults in Georgia. J Nutr Elder 2010;29:170–91. 10.1080/01639361003772400
    1. Walkom EJ, Loxton D, Robertson J. Costs of medicines and health care: a concern for Australian women across the ages. BMC Health Serv Res 2013;13:484 10.1186/1472-6963-13-484
    1. Kovacs PJ, Perkins N, Nuschke E, et al. . How end-stage renal disease patients manage the Medicare Part D coverage gap. Health Soc Work 2012;37:225–33. 10.1093/hsw/hls031
    1. Sommers BD, Blendon RJ, Orav EJ, et al. . Changes in utilization and health among low-income adults after Medicaid expansion or expanded private insurance. JAMA Intern Med 2016;176:1501–9. 10.1001/jamainternmed.2016.4419
    1. Rylko-Bauer B, Farmer P. Structural violence, poverty, and social suffering. The Oxford Handbook of the social science of poverty 2016:47–75.
    1. Farmer PE, Nizeye B, Stulac S, et al. . Structural violence and clinical medicine. PLoS Med 2006;3:e449 10.1371/journal.pmed.0030449

Source: PubMed

Sponsor e collaboratori

Condizioni mediche

Interventi farmacologici

3
Sottoscrivi