Art and Science of Instrument Development for Stated-Preference Methods

Janssen, Ellen; Bridges, John F.P.

doi:10.1007/s40271-017-0261-9

Cited by 10 publications

(9 citation statements)

References 22 publications

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“…25 Survey development included a combination of qualitative methods. 26,27 Initial attributes and levels were identified from semi-structured interviews with members of a lung cancer patient action committee (PAC) as well as from previous patient preference studies in lung cancer. 17 The initial selection of attributes and levels were incorporated into a pilot survey that was administered to 11 PAC members.…”

Section: Development Of the Choice Tasksmentioning

confidence: 99%

<p>Analysis of Patient Preferences in Lung Cancer – Estimating Acceptable Tradeoffs Between Treatment Benefit and Side Effects</p>

Janssen¹,

Dy²,

Meara³

et al. 2020

PPA

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Objective: Increased treatment options and longer survival for lung cancer have generated increased interest in patient preferences. Previous studies of patient preferences in lung cancer have not fully explored preference heterogeneity. We demonstrate a method to explore preference heterogeneity in the willingness of patients with lung cancer and caregivers to trade progression-free survival (PFS) with side effects. Patients and Methods: Patients and caregivers attending a national lung cancer meeting completed a discrete-choice experiment (DCE) designed through a collaboration with patients. Participants answered 13 choice tasks described across PFS, short-term side effects, and four long-term side effects. Side effects were coded as a one-level change in severity (none-mild, mild-moderate, or moderate-severe). A mixed logit model in willingness-to-pay space estimated preference heterogeneity in acceptable tradeoffs (time equivalents) between PFS and side effects. The study was reported following quality indicators from the United States Food and Drug Administration's patient preference guidance. Results: A total of 87 patients and 24 caregivers participated in the DCE. Participants would trade 3.7 month PFS (95% CI (CI): 3.3-4.1) for less severe functional long-term treatment side effects, 2.3 months for less severe physical long-term effects (CI: 1.9-2.8) and cognitive long-term effects (CI: 1.8-2.8), 0.9 months (CI: 0.4-1.4) for less severe emotional long-term effects, and 1.8 months (CI: 1.4-2.3) for less severe short-term side effects. Most participants (90%) would accept treatment with more severe functional long-term effects for 8.4 additional month PFS. Conclusion: Participants would trade PFS for changes in short-term side effects and longterm side effects, although preference heterogeneity existed. Lung cancer treatments that offer less PFS but also less severe side effects might be acceptable to some patients.

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Section: Development Of the Choice Tasksmentioning

confidence: 99%

<p>Analysis of Patient Preferences in Lung Cancer – Estimating Acceptable Tradeoffs Between Treatment Benefit and Side Effects</p>

Janssen¹,

Dy²,

Meara³

et al. 2020

PPA

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“…To identify and select attributes and levels, we followed the current literature on the development of DCEs and implemented the following steps: (1) compilation of evidence, (2) consultation of experts, (3) consultation of people with diabetes as relevant actors, (4) pretest and (5) pilot test. 46 47 …”

Section: Methods and Analysismentioning

confidence: 99%

Preferences of people with type 2 diabetes for telemedical lifestyle programmes in Germany: protocol of a discrete choice experiment

et al. 2020

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IntroductionTelemedical lifestyle programmes for people with type 2 diabetes mellitus (T2DM) provide an opportunity to develop a healthier lifestyle and consequently to improve health outcomes. When implementing new programmes into standard care, considering patients’ preferences may increase the success of the participants. This study aims to examine the preferences of people with T2DM with respect to telemedical lifestyle programmes, to analyse whether these preferences predict programme success and to explore the changes that may occur during a telemedical lifestyle intervention.Methods and analysisWe outline the protocol of the development and assessment of a discrete choice experiment (DCE) to examine patient preferences in a telemedical lifestyle programme with regard to the functions of the online portal, communication, responsibilities, group activities and time requirements. To develop the design of the DCE, we conducted pilot work involving healthcare experts and in particular people with T2DM using cognitive pretesting. The final DCE is being implemented within a randomised controlled trial for investigating whether participation in a telemedical lifestyle intervention programme sustainably improves the HbA1c values in 850 members of a large German statutory health insurance with T2DM. Preferences are being assessed before and after participants complete the programme. The DCE data will be analysed using regression and latent class analyses.Ethics and disseminationThe DCE study has been approved by the ethics committee of the medical faculty of the Heinrich Heine University Duesseldorf, registration number 2018-242-ProspDEuA, registered on 6 December 2018. The TeLIPro trial is registered at the US National Library of Medicine, registration number NCT03675919, registered on 15 September 2018. We aim to disseminate our results in peer-reviewed journals, at national and international conferences and among interested patient groups and the public.

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“…Guided by recent advancements in the development of stated-preference instruments, Figure 2 illustrates how our PFDD effort was organized across five stages: engagement, development, pretesting, pilot testing, and presentation. 18 – 21 These stages were intended to guide the different phases of development and dissemination of the survey, and we can also see these activities as a continuous, snowballing advocacy effort. The PFDD meeting was scheduled before these efforts commenced, which motivated everyone to complete the project on time.…”

Section: Methodsmentioning

confidence: 99%

Developing and piloting an instrument to prioritize the worries of patients with acute myeloid leukemia

Bridges¹,

Oakes²,

Reinhart³

et al. 2018

PPA

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BackgroundAcute myeloid leukemia (AML) is a rapidly progressing blood cancer for which new treatments are needed. We sought to promote patient-focused drug development (PFDD) for AML by developing and piloting an instrument to prioritize the worries of patients with AML.Patients and methodsAn innovative community-centered approach was used to engage expert and community stakeholders in the development, pretesting, pilot testing, and dissemination of a novel best–worst scaling instrument. Patient worries were identified through individual interviews (n=15) and group calls. The instrument was developed through rigorous pretesting (n=13) and then piloted among patients and caregivers engaged in this study (n=25). Priorities were assessed using best–worst scores (spanning from +1 to −1) representing the relative number of times that items were endorsed as the most and the least worrying. All findings were presented at a PFDD meeting at the US Food and Drug Administration (FDA) that was attended by >80 stakeholders.ResultsThe final instrument included 13 worries spanning issues such as decision making, treatment delivery, physical impacts, and psychosocial effects. Patients and caregivers most prioritized worries about dying from their disease (best minus worst [BW] score=0.73), long-term side effects (BW=0.28), and time in hospital (BW=0.25).ConclusionCommunity-centered approaches are valuable in designing and executing PFDD meetings and associated quantitative surveys to document the experience of patients. Expert and community stakeholders welcomed the opportunity to share their experiences with the FDA and strongly endorsed implementing this survey nationally.

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Art and Science of Instrument Development for Stated-Preference Methods

Cited by 10 publications

References 22 publications

<p>Analysis of Patient Preferences in Lung Cancer – Estimating Acceptable Tradeoffs Between Treatment Benefit and Side Effects</p>

<p>Analysis of Patient Preferences in Lung Cancer – Estimating Acceptable Tradeoffs Between Treatment Benefit and Side Effects</p>

Preferences of people with type 2 diabetes for telemedical lifestyle programmes in Germany: protocol of a discrete choice experiment

Developing and piloting an instrument to prioritize the worries of patients with acute myeloid leukemia

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