Vol.:(0123456789) The Patient - Patient-Centered Outcomes Research https://doi.org/10.1007/s40271-021-00495-2 ORIGINAL RESEARCH ARTICLE Prioritization and Refnement of Patient‑Informed Value Elements as Attributes for Chronic Obstructive Pulmonary Disease Treatment Preferences Julia F. Slejko 1  · Yoon Duk Hong 1  · Jamie L. Sullivan 2  · Robert M. Reed 3  · Susan dosReis 1 Accepted: 7 January 2021 © The Author(s), under exclusive licence to Springer Nature Switzerland AG part of Springer Nature 2021 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 refnement. 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 refnement of the value elements and the phrasing. Results Twenty-three participants, 18 male and fve 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 refnement: Side Efects, 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 refned, rephrased, or modifed and this list was narrowed to six value elements (Side Efects, 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 identifed patients with chronic obstructive pulmonary disease key attrib- utes of value-based decision making that underpin beneft-risk trade-ofs between physical endurance, treatment side efects, care access, and cost. This study illustrates an iterative process for eliciting and refning a comprehensive list of value ele- ments, resulting in a subgroup of elements important to a specifc patient population. * Julia F. Slejko jslejko@rx.umaryland.edu 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 2 COPD Foundation, Miami, FL, USA 3 University of Maryland School of Medicine, Baltimore, MD, USA 1 Introduction Chronic obstructive pulmonary disease (COPD) is a com- mon progressive condition of the airways characterized by diminishing lung function and persistent respiratory symp- toms. Chronic obstructive pulmonary disease has been the third leading cause of death in the world since 2016, with an estimated 3 million deaths (5.3% of all deaths) [1]. Numer- ous pharmacologic treatments in various combinations, for- mulations, and delivery options exist for COPD [2]. Newer treatments include dual- and triple-therapy inhalers, combin- ing long-acting beta 2 -agonists, muscarinic antagonists and/ or inhaled corticosteroids, providing convenience but often with higher cost sharing for patients. Economic evaluations Supplementary Information The online version contains supplementary material available at https://doi.org/10.1007/s4027 1-021-00495-2.