| Popis: |
BackgroundRecent developments in cancer therapeutics have allowed increased use of Oral Anticancer Medications (OAMs), including in the treatment of breast cancer. Breast cancer is the most common cancer among women in the United States. Patients with breast cancer may face key barriers in managing their OAMs at home. These challenges can lead to sub-optimal adherence and lower the overall quality of life. Designing interventions that enhance the patient experience with use of OAMs requires a deeper understanding of barriers faced by patients as they navigate their cancer care journey. The objective of this study was to identify the unmet medication management needs of patients with breast cancer who are receiving OAMs and co-design an early prototype intervention with patients to support medication management needs of patients with breast cancer.MethodsTwo phases comprise this study. Phase 1 involved patient-journey mapping to characterize the longitudinal experience of OAMs use among patients diagnosed with breast cancer. In phase 2, we conducted participatory design (PD) workshops to develop a prototype tool to address OAM needs identified in phase 1. All participants were recruited from an outpatient breast cancer clinic in Indianapolis. Eligible participants were: 18 years of age or older, diagnosed with breast cancer, and currently receiving an OAM. All participants completed a brief sociodemographic and health information questionnaire. In phase 1, enrolled persons participated in a journey mapping exercise through semi-structured interviews. Interviews were conducted either in-person or remotely via Zoom, based on participant preference. For each interview, two researchers and the participant collaborated to create individual patient journey maps to generate a concise visual storyboard focused on medication use experiences related to OAMs. The journey maps helped capture treatment timelines, key markers of medication use, and specific barriers faced by patients. Individual journey maps were consolidated to generate personas representing groups of patients with related characteristics, treatment types, goals, and unmet needs. In phase 2, three rounds of PD workshops were conducted using the focus group format to develop an early prototype intervention. In round one (inspiration stage), participants defined the problem space and prioritized a list of challenges amenable to solutions; in round two (ideation stage), participants generated multiple possible solutions and design ideas; and in round three (convergence stage), two design concepts were selected and evaluated by participants.ResultsIn phase 1, 12 interviews (11 females and 1 male) were completed. The median age of participants was 65.5 years (range, 37-75). Participants were divided into two groups based on their prescribed medication types: (1) specialty medication (palbociclib or ribociclib; n=4 patients) and (2) traditional medication (tamoxifen, anastrozole, or exemestane; n=8 patients). We defined ‘Specialty’ medications as those that require specialty pharmacies and ‘traditional’ medications as those obtainable in local community pharmacies. To represent participants across these two broad categories of medications, two personas were created. Participants who had been prescribed specialty medication reported difficulty navigating the insurance process during medication fills, while participants who prescribed traditional medication did not. Notably, the word “prior authorization” was not used by participants to explain the issues they experienced. While all participants reported having side effects from their medications, sub-optimal adherence (n=2) was reported among the traditional medication group only. Other participants taking traditional medications either found their own ways to manage side effects or simply reported: “dealing with side effects as I don’t want cancer.” Participants expressed coping with side effects by enduring them. Participants had few strategies to manage their side effects, often stating that “they didn’t think of reaching out to the doctor,” when asked. Additionally, participants mentioned needing more financial and emotional support during their treatment journey. In phase 2, each PD session was conducted with 4-5 participants and 2 researchers (the design panel). Participants identified key challenges including difficulties navigating resources and information as well as managing medication side effects. The design panel prioritized two design concepts, which were subsequently developed into two prototypes: 1) a physical breast cancer handbook; and 2) an interactive treatment navigation app for use on tablet and smartphone devices. Our team plans to consolidate, further develop, and evaluate these prototypes in subsequent work as a follow up to this pilot study.ConclusionThis study provides insight into the patient experience with OAMs. The personas created can be applied in designing interventions tailored to breast cancer patients’ needs and goals, while the consolidated journey maps identify potential areas for improvement. Adequate patient education and enhanced tools and processes are necessary to manage medication side effects effectively, ultimately leading to improved medication outcomes and assisting patients in navigating their treatment. The two design concepts require further revision prior to implementation and pilot testing. |
