• Methodological Challenges for Epidemiologic Studies of Deprescribing at the End of Life

      Tjia, Jennifer; Lund, Jennifer L.; Mack, Deborah; Mbrah, Attah; Yuan, Yiyang; Chen, Qiaoxi; Osundolire, Seun; McDermott, Cara L. (2021-09-01)
      Purpose of Review: To describe approaches to measuring deprescribing and associated outcomes in studies of patients approaching end of life (EOL). Recent Findings: We reviewed studies published through 2020 that evaluated deprescribing in patients with limited life expectancy and approaching EOL. Deprescribing includes reducing the number of medications, decreasing medication dose(s), and eliminating potentially inappropriate medications. Tools such as STOPPFrail, OncPal, and the Unnecessary Drug Use Measure can facilitate deprescribing. Outcome measures vary and selection of measures should align with the operationalized deprescribing definition used by study investigators. Summary: EOL deprescribing considerations include medication appropriateness in the context of patient goals for care, expected benefit from medication given life expectancy, and heightened potential for medication-related harm as death nears. Additional data are needed on how EOL deprescribing impacts patient quality of life, caregiver burden, and out-of-pocket medication-related costs to patients and caregivers. Investigators should design deprescribing studies with this information in mind.
    • Shared Medication PLanning In (SIMPLIfy) Home Hospice: An Educational Program to Enable Goal-Concordant Prescribing In Home Hospice

      Tjia, Jennifer; Clayton, Margaret F.; Fromme, Erik K.; McPherson, Mary Lynn; DeSanto-Madeya, Susan (2021-11-01)
      CONTEXT: Simplifying medication regimens by tapering and/or withdrawing unnecessary drugs is important to optimize quality of life and safety for patients with serious illness. Few resources are available to educate clinicians, patients and family caregivers about this process. OBJECTIVE: To describe the development of an educational program called Shared Medication PLanning In (SIMPLIfy) Home Hospice. METHODS: An environmental scan identified a state-of-the-art educational program for home hospice deprescribing that we adapted using a stakeholder panel engagement process. The stakeholder panel (two hospice administrators, three nurses, two physicians, two pharmacists, and two former family caregivers) drawn from two geographically diverse hospice agencies reviewed the educational program and recommended additional content. RESULTS: Iterative rounds of review and feedback resulted in: 1) a three-part clinician educational program (total duration = 1.5 hour) that presents a standardized, goal-concordant, medication review approach to align medications and conversations about regimen simplification with patient and family caregiver goals of care; 2) a patient-family caregiver medication management educational notebook that presents common symptoms, hospice medications, and medication regimen simplification principles; and 3) a brief guide including helpful phrases to use as conversation starters for key steps in the program. A professional designer created thematic coherence for all materials that was well received by stakeholder panelists and hospice staff. CONCLUSION: Educational materials can support hospice programs' and clinicians' efforts to implement goal-concordant medication simplification that optimizes end-of-life outcomes for patients and family caregivers. Evaluation of outcomes including medication appropriateness and family caregiver medication administration burden are not yet available.
    • Stakeholder-engaged process for refining the design of a clinical trial in home hospice

      Tjia, Jennifer; Clayton, Margaret; Chiriboga, German; Staples, Brooke; Puerto, Geraldine; Rappaport, Lynley; DeSanto-Madeya, Susan (2021-04-30)
      BACKGROUND: Clinical trials in home hospice settings are important to build the evidence base for practice, but balancing the burden and benefit of clinical trial conduct for clinicians, patients, and family caregivers is challenging. A stakeholder-engaged process can help inform and refine key aspects of home hospice clinical trials. The aim of this study was to describe a stakeholder-engaged process to refine, design, and implement aspects of an educational intervention trial in home hospice, including recommendations for refining intervention content and delivery, recruitment and enrollment strategies, and content and frequency of outcome measurement. METHODS: A panel of interprofessional (1 hospice administrator, 3 nurses, 2 physicians, 2 pharmacists) and 2 former family caregiver stakeholders was systematically selected and invited to participate based on expertise, representing 2 geographically distinct hospices who were participating in the clinical trial. Teleconferences followed a predetermined procedural sequence: 1. pre-meeting materials distribution and review; 2. pre-meeting email solicitation of concerns in response to materials; 3. teleconference with structured and guided discussion; and 4. documentation and distribution of minutes for accuracy review and future meeting guidance. Discussion topics were distinct for each panel meeting. Written reflections on the stakeholder engagement process were collected from panel members to further refine our process. RESULTS: Five initial biweekly teleconferences resulted in recommendations for recruitment strategy, enrollment process, measurement frequency, patient inclusion, and primary care physician notification of the patient's trial involvement. The panel continues to participate in quarterly teleconferences to review progress and unexpected questions and concerns. Panelist reflections reveal personal and professional benefit from participation. CONCLUSIONS: An interprofessional stakeholder process is feasible and invaluable for developing home hospice intervention studies, contributing to better science, successful trial implementation, and relevant, valid outcomes. TRIAL REGISTRATION: Clinicaltrials.gov, NCT03972163 , Registered June 3, 2019.