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Prioritization and Refinement of Patient-Informed Value Elements as Attributes for Chronic Obstructive Pulmonary Disease Treatment Preferences

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A Correction to this article was published on 22 February 2021

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Abstract

Background and Objective

Formative research studies can inform stated-preference instrument development to quantify the importance of various attributes of healthcare treatments. The objective of this study was to elicit from patients with chronic obstructive pulmonary disease the prioritization of an established set of patient-informed value elements.

Methods

Using an iterative mixed-methods study design, we engaged individuals living with chronic obstructive pulmonary disease in Phase 1 value element elicitation and Phase 2 language refinement. Study participants were recruited from March to July 2019. Four guided activities, administered in an online instrument, elicited individual preferences for 40 disease-agnostic value elements that were aligned with treatment, outcomes, or care process. Responses from the guided activities were summarized and then presented to a patient advocate and additional patient participants for further refinement of the value elements and the phrasing.

Results

Twenty-three participants, 18 male and five female, mean age of 66 years (standard deviation = 7) were enrolled in Phase 1. Participant responses informed the selection of eight elements as the key candidates for the Phase 2 language refinement: Side Effects, New Therapeutic Option, Available Treatment, Appropriateness of Care, Predictable Healthcare Needs, Physical Activities: Endurance and Symptom Control, and Explanation of Treatment. With feedback from a patient advocate and additional patient participants, elements were refined, rephrased, or modified and this list was narrowed to six value elements (Side Effects, New Therapeutic Option, Willingness to Pay, Physical Activities, Explanation of Treatment, and Access to Care) to serve as attributes in a conceptual framework for a future quantitative stated-preference instrument.

Conclusions

This patient-engaged formative work identified patients with chronic obstructive pulmonary disease key attributes of value-based decision making that underpin benefit-risk trade-offs between physical endurance, treatment side effects, care access, and cost. This study illustrates an iterative process for eliciting and refining a comprehensive list of value elements, resulting in a subgroup of elements important to a specific patient population.

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Acknowledgements

The authors thank Dr. Robert Wise of Johns Hopkins Bayview Medical Center for his efforts in the study advertisement, which led to patient recruitment necessary to complete the study.

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Authors and Affiliations

  1. Department of Pharmaceutical Health Services Research, University of Maryland School of Pharmacy, 220 Arch Street, 12th Floor, Room 01-214, Baltimore, MD, 21201, USA

    Julia F. Slejko, Yoon Duk Hong & Susan dosReis

  2. COPD Foundation, Miami, FL, USA

    Jamie L. Sullivan

  3. University of Maryland School of Medicine, Baltimore, MD, USA

    Robert M. Reed

Authors
  1. Julia F. Slejko
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Corresponding author

Correspondence to Julia F. Slejko.

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Funding

This work was funded by a grant from the Pharmaceutical Researchers and Manufacturers of America (PhRMA) Foundation Center of Excellence in Value Assessment Award. The views expressed in this manuscript were not contingent upon approval from or influenced by the PhRMA Foundation. Additional funding by the PhRMA supported this study.

Conflict of Interest

Julia F. Slejko reports grants from GSK Pharmaceuticals, Novartis Pharmaceuticals, and Takeda Pharmaceuticals and a teaching honorarium from Pfizer, all outside the submitted work. Susan dosReis reports grants from the National Institute of Mental Health, the Patient Centered Outcomes Research Institute, the US Food and Drug Administration, PhRMA Foundation, and GlaxoSmithKline. Yoon Duk Hong, Jamie L. Sullivan, and Robert M. Reed have no conflicts of interest that are directly relevant to the content of this article.

Availability of Data and Material

The ESM provides the instrument used to collect all the data summarized at each phase of this formative work. This enables transparency and replication of this study in other populations. There are no software codes or analytical models related to this work.

Author Contributions

JFS and SDR obtained funding for this work, conceptualized the design and data collection, led the data analysis, contributed to the interpretation of the findings, and drafted and edited all aspects of the manuscript. JLS and RMR contributed to participant recruitment, data interpretation and analysis, and reviewed and edited all versions of the manuscript. YDH assisted with the data collection and the summation of the findings and reviewed and edited all versions of the manuscript.

Supplementary Information

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Slejko, J.F., Hong, Y.D., Sullivan, J.L. et al. Prioritization and Refinement of Patient-Informed Value Elements as Attributes for Chronic Obstructive Pulmonary Disease Treatment Preferences. Patient 14, 569–579 (2021). https://doi.org/10.1007/s40271-021-00495-2

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