Guilcher Sara J T, Cadel Lauren, Everall Amanda C, Kaiser Anita, Cimino Stephanie R, El-Kotob Rasha, McCarthy Lisa, O'Connell Colleen, MacKay Crystal, Milligan James, Lofters Aisha, Hitzig Sander L, Zidarov Diana
Leslie Dan Faculty of Pharmacy, University of Toronto, Toronto, Ontario, Canada.
St. John's Rehab Research Program, Sunnybrook Research Institute, Sunnybrook Health Sciences Centre, Toronto, Ontario, Canada.
PLoS One. 2025 May 23;20(5):e0323877. doi: 10.1371/journal.pone.0323877. eCollection 2025.
Despite the high prevalence of medication use among persons with mobility limitations, there are currently no patient-reported measures that have been co-developed to assess the experiences of medications in everyday life. Therefore, the objective of this study was to develop potential items for a patient-reported experience measure related to medication use for adults with mobility limitations.
We conducted a concept mapping study with people with mobility limitations. Participants were required to: be 18 years of age or older, live in Canada, live in the community, speak, and read English or French, have a mobility limitation, and take at least one medication recommended by a prescriber in the preceding three months. Participants generated statements in response to the focal prompt: what matters to you about medications in your everyday life? Participants then sorted piles of statements based on their conceptual similarity, rated each statement on two dimensions (importance and realistic), and created visual maps of the data.
A total of 45 individuals participated in at least one step of the concept mapping. Participants generated 694 statements which were synthesized into 80 unique statements. The final map contained ten clusters: (1) medication-related financial considerations and support; (2) pharmacy-related services and supports; (3) access to medications and medication-related supports; (4) acceptance and stigma around medication use; (5) ability and ease of taking medications; (6) shared decision-making and access to medication-related research and information; (7) medication effectiveness, side effects and risks; (8) knowledge, self-awareness and empowerment; (9) accessibility of healthcare providers; and (10) communication and relationships with healthcare providers.
In this participatory-based research, we have identified key items and domains related to medication-related experiences. Understanding what matters to patients will support quality improvement of healthcare delivery and outcomes for adults with mobility limitations who take medications.
尽管行动不便者中药物使用的比例很高，但目前尚无共同开发的患者报告措施来评估日常生活中用药的体验。因此，本研究的目的是为行动不便的成年人开发与用药相关的患者报告体验测量的潜在项目。
我们对行动不便者进行了一项概念映射研究。参与者须满足：年龄在18岁及以上、居住在加拿大、生活在社区、会说和读英语或法语、有行动不便问题，且在过去三个月内服用过至少一种开处方者推荐的药物。参与者针对焦点提示“在日常生活中，药物对你来说重要的是什么？”生成陈述。然后，参与者根据概念相似性对陈述进行分类，在两个维度（重要性和现实性）上对每个陈述进行评分，并创建数据可视化地图。
共有45人参与了概念映射的至少一个步骤。参与者生成了694条陈述，这些陈述被综合成80条独特的陈述。最终的地图包含十个类别：（1）与药物相关的财务考虑和支持；（2）与药房相关的服务和支持；（3）药物获取及与药物相关的支持；（4）对药物使用的接受度和污名化；（5）服药的能力和便利性；（6）共同决策以及获取与药物相关的研究和信息；（7）药物疗效、副作用和风险；（8）知识、自我认知和赋权；（9）医疗服务提供者的可及性；（10）与医疗服务提供者的沟通和关系。
在这项基于参与的研究中，我们确定了与用药体验相关的关键项目和领域。了解对患者重要的事项将有助于提高为服用药物的行动不便成年人提供的医疗服务质量和改善治疗效果。
