The patient
-
This study aimed to compare the measurement properties of the EQ-5D-3L (3L) and EQ-5D-5L (5L) in cancer patients. ⋯ In general, 5L appears to have better measurement properties than 3L for measuring the health-related quality of life of cancer patients. While both the 3L and 5L are suitable, 5L should be preferable to 3L for use in cancer outcomes research.
-
A 2017 systematic review suggested patient engagement in clinical trials has been limited, with little active engagement in trial design or data analysis, interpretation or dissemination. Additionally, there remains limited sex/gender reporting in clinical trial research. ⋯ Our digital patient partner and investigator decision aids are the first to provide information technology to deliver sex/gender, POR knowledge, and decision support beyond the traditional decision aids used for health screening and/or treatment decisions. The decision aids have the potential to make a significant contribution to Canada's Strategy for POR and support the collaborative efforts of patients and investigators to build a sustainable, accessible and equitable health care system.
-
Relapsing-remitting multiple sclerosis (RRMS) is an incurable disease characterised by relapses (periods of function loss) followed by full or partial recovery, and potential permanent disability over time. Many disease-modifying treatments (DMTs) exist that help reduce relapses and slow disease progression. Most are contraindicated during conception/pregnancy and some require a discontinuation period before trying to conceive. Although around three-quarters of people with RRMS are women, there is limited knowledge about how reproductive issues impact DMT preference. ⋯ Women with RRMS considering having a child prefer DMTs with more favourable reproduction-related attributes, even when not trying to conceive. Reproductive issues also influenced preferences for DMT attributes not directly related to pregnancy, with preferences dependent on the life circumstances in which choices were made. The design of the DCE highlights the benefits of considering the scenario in which participants make choices, as they may change over time.
-
Biologic therapies are cost effective for active rheumatoid arthritis but have adverse effects and are costly. Tapering of biologics is emerging as an important consideration when sustained remission is achieved. Recent trials have highlighted the clinical feasibility of tapering, but there is little evidence on how proposed tapering would be received by patients. The aim of this study was to explore factors influencing hypothetical decisions of patients with rheumatoid arthritis on tapering their biologics and their perspectives on remission and flare when considering the possibility of tapering. ⋯ This study provides novel insight into the perspectives of patients with rheumatoid arthritis on tapering biologics when sustained remission is achieved at a crucial juncture in global affordability for healthcare systems. These patient perspectives can inform the planning of decision aids and clinical trials of decision-making processes when tapering is proposed.
-
Patients and caregivers are increasingly recognized as key stakeholders in developing clinical practice guidelines (CPGs). Online engagement approaches offer the promise of a rigorous, scalable, and convenient engagement method. ⋯ It provides practical guidance for conducting online modified-Delphi panels that covers (1) joint development of the engagement approach with relevant stakeholders, (2) adaptation of methods used by experts in guideline development, (3) pilot testing, (4) participant recruitment, (5) determining panel size and composition, (6) building participant capacity, (7) facilitation of two-way interaction, (8) continuous engagement and retention of participants, (9) rigorous data analysis, (10) evaluation of engagement activities, and (11) result dissemination. The paper is based on a recently completed study about engaging individuals with Duchenne muscular dystrophy (DMD) and their caregivers in determining the patient-centeredness of DMD care guidelines.