Support Tools for Preference-Sensitive Decisions in Healthcare: Where Are We? Where Do We Go? How Do We Get There?

Ostermann, Jan; Brown, Derek S.; Til, Janine Astrid van; Bansback, Nick; Marshall, Deborah; Bewtra, Meenakshi

doi:10.1007/s40271-019-00372-z

Cited by 14 publications

(16 citation statements)

References 23 publications

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“…This approach, where clinicians and patients collaborate in making clinical plans, is a key component to delivering personcentered care. [2][3][4][5] Patients who are more activated (ie, view themselves as active managers of their health and healthcare) have been shown to have better outcomes and care experiences, and a key measure of patient activation is their involvement in decision making. 6 A recent Cochrane review found that patients exposed to decision aids used for shared decision making felt more knowledgeable of risks and benefits, better informed, and clearer about their values.…”

Section: Introductionmentioning

confidence: 99%

Heterogeneous Patient Preferences for Modern Antiretroviral Therapy: Results of a Discrete Choice Experiment

et al. 2020

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Objective: Limited data describe patient preferences for the growing number of antiretroviral therapies (ARTs). We quantified preferences for key characteristics of modern ART deemed relevant to shared decision making.Methods: A discrete choice experiment survey elicited preferences for ART characteristics, including dosing (frequency and number of pills), administration characteristics (pill size and meal requirement), most bothersome side effect (from diarrhea, sleep disturbance, headaches, dizziness/difficulty thinking, depression, or jaundice), and most bothersome long-term effect (from increased risk of heart attacks, bone fractures, renal dysfunction, hypercholesterolemia, or hyperglycemia). Between March and August 2017, the discrete choice experiment was fielded to 403 treatment-experienced persons living with human immunodeficiency virus (HIV), enrolled from 2 infectious diseases clinics in the southern United States and a national online panel. Participants completed 16 choice tasks, each comparing 3 treatment options. Preferences were analyzed using mixed and latent class logit models.Results: Most participants were male (68%) and older (interquartile range: 42-58 years), and had substantial treatment experience (interquartile range: 7-21 years). In mixed logit analyses, all attributes were associated with preferences. Side and long-term effects were most important, with evidence of substantial preference heterogeneity. Latent class analysis identified 5 preference classes. For classes 1 (40%), 2 (24%), and 3 (21%), side effects were most important, followed by long-term effects. For class 4 (10%), dosing was most important. Class 5 (4%) was largely indifferent to ART characteristics. Conclusion:Overall, treatment-experienced persons living with HIV valued minimizing side effects and long-term toxicities over dosing and administration characteristics. Preferences varied widely, highlighting the need to elicit individual patient preferences in models of shared antiretroviral decision making.

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Section: Introductionmentioning

confidence: 99%

Heterogeneous Patient Preferences for Modern Antiretroviral Therapy: Results of a Discrete Choice Experiment

et al. 2020

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“…We believe that this approach has applicability to both chronic and acute conditions. While the options for varying preferences in clinical practice may be more limited for acute or time-limited conditions as compared to chronic conditions, acute conditions are still preference-sensitive, i.e., requiring some form of trading between risks and benefits as well as other aspects of care that contribute to overall quality of care [40][41][42]. Because the opportunity to incorporate patient preferences for those other aspects of quality care for acute conditions is limited at the point of care, then one may argue that using preference methods to inform the design of treatments for acute conditions may be more pertinent than chronic conditions.…”

Section: Discussionmentioning

confidence: 99%

Co-production of randomized clinical trials with patients: a case study in autologous hematopoietic stem cell transplant for patients with scleroderma

Aguiar

Laba

Munro

et al. 2021

Trials

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Background Increasingly, it is argued that clinical trials struggle to recruit participants because they do not respond to key questions or study treatments that patients will be willing or able to use. This study explores how elicitation of patient-preferences can help designers of randomized controlled trials (RCTs) understand the impact of changing modifiable aspects of treatments or trial design on recruitment. Methods Focus groups and a discrete choice experiment (DCE) survey were used to elicit preferences of people with scleroderma for autologous hematopoietic stem cell transplant (AHSCT) treatment interventions. Preferences for seven attributes of treatment (effectiveness, immediate and long-term risk, care team composition and experience, cost, travel distance) were estimated using a mixed-logit model and used to predict participation in RCTs. Results Two hundred seventy-eight people with scleroderma answered the survey. All AHSCT treatment attributes significantly influenced preferences. Treatment effectiveness and risk of late complications contributed the most to participants’ choices, but modifiable factors of distance to treatment center and cost also affected preferences. Predicted recruitment rates calibrated with participation in a recent trial (33%) and suggest offering a treatment closer to home, at lower patient cost, and with holistic, multidisciplinary care could increase participation to 51%. Conclusions Through a patient engaged approach to preference elicitation for different features of AHSCT treatment options, we were able to predict what drives the decisions of people with scleroderma to participate in RCTs. Knowledge regarding concerns and the trade-offs people are willing to make can inform clinical study design, improving recruitment rates and potential uptake of the treatment of interest.

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“…Building on this appropriateness research, another related application of PROMs at the micro level is the role of PROMs to inform setting realistic expectations for patients, and promoting shared decision-making with their care provider [ 21 ]. We evaluated whether routinely collected pre- and post-TKA PROMs could be integrated into a patient decision aid to better inform these appropriateness criteria in a randomized controlled trial with a primary outcome measure of decision quality [ 22 ].…”

Section: Application Of Proms In Routine Clinical Practice and Health Care Servicesmentioning

confidence: 99%

The use of patient-reported outcome measures in hip and knee arthroplasty in Alberta

Marshall

Jin

Pittman

et al. 2021

J Patient Rep Outcomes

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PROMs are part of routine measurement for hip and knee replacement in Alberta, Canada. We provide an overview of how PROMs are implemented in routine care, and how we use PROMs data for decision-making at different levels within the health system. The Alberta Bone and Joint Health Institute (ABJHI) ran a randomized controlled trial to determine the effectiveness and cost-effectiveness of an evidence-based care pathway for hip and knee arthroplasty in 2004. The study included several PROMs questionnaires: Western Ontario and McMaster Universities Osteoarthritis Index, Health Utility Index, Short Form 36 and the EQ-5D-3L. Subsequently, the focus shifted to spread and scale of the care pathway provincially. WOMAC and EQ-5D-3L and a patient experience survey were selected for provincial adoption – captured before surgery, three-months post-surgery, and 12-months post-surgery. These PROMs data were integrated into research and routine clinical practice at the micro, meso and macro levels. At the micro level, PROMs data are used at the individual patient and provider level for patients to provide input on their care and as a tool to communicate with their healthcare providers. We examined the relationship of appropriateness and patient reported outcomes in a prospective cohort study. We evaluated whether routinely collected PROMs could be integrated into a patient decision aid to better inform shared decision making. At the meso level, continuous quality improvement reports are provided routinely to individual health care providers, hospitals and clinics on their performance against the measurement framework and standard key performance indicators. At the macro level, PROMs data are used to evaluate system performance by comparing outcomes across different jurisdictions or over time and support health policy decision making. Combined with administrative databases, we have used simulation models to reflect transition through the continuum of care from disease onset through end-stage care regarding the burden of disease, healthcare resource requirements and associated healthcare costs. The addition of PROMs data in clinical repositories and analyses enables the system to identify and address issues of continuous quality improvement against a measurement framework of performance indicators and to explicitly recognize the trade-offs that are inherent in any resource-constrained system.

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Support Tools for Preference-Sensitive Decisions in Healthcare: Where Are We? Where Do We Go? How Do We Get There?

Abstract: Understanding and respecting patients' values, preferences and expressed needs are the foundation of patient-centered care." Harvey Picker [1]

Cited by 14 publications

References 23 publications

Heterogeneous Patient Preferences for Modern Antiretroviral Therapy: Results of a Discrete Choice Experiment

Heterogeneous Patient Preferences for Modern Antiretroviral Therapy: Results of a Discrete Choice Experiment

Co-production of randomized clinical trials with patients: a case study in autologous hematopoietic stem cell transplant for patients with scleroderma

The use of patient-reported outcome measures in hip and knee arthroplasty in Alberta

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