Published: Novenber 9, 2023

Introduction

Pulmonary arterial hypertension (PAH) presents a significant challenge in healthcare, with limited research into patient preferences complicating treatment decisions. Patients facing PAH often confront life-altering limitations, emphasizing the critical need for personalized, patient-centered care strategies.

Client's Problem

In Germany, managing PAH involves navigating complex treatment decisions amidst significant morbidity and mortality rates. Traditional approaches lacked insight into patient preferences, leaving clinicians with limited guidance on tailoring treatments to individual needs. The rarity of PAH compounded this challenge, necessitating innovative approaches to understanding patient perspectives.

Proposed Solution

To address this gap, a pioneering study was launched to uncover patient preferences and heterogeneity regarding PAH treatment regimens. By placing patients at the heart of the research, the project aimed to develop a nuanced understanding of their needs and preferences. The solution involved leveraging a best-worst scaling case 3 (BWS-3) experiment, providing a robust framework for eliciting patient preferences.

Human-Centered Approach

The solution was inherently human-centered, rooted in empathy and designed to empower patients in their treatment decisions. Collaboration with a patient association facilitated recruitment and ensured that the target population was represented. The survey structure prioritized patient experiences, gathering comprehensive data on demographics, disease severity, and treatment preferences. Qualitative interviews and pretesting further refined the questionnaire, ensuring clarity and relevance to patient needs.

Impact on Decision Makers

The human-centered approach not only empowered patients but also provided invaluable insights for decision-makers. By understanding patient preferences, clinicians could tailor treatment plans to individual needs, fostering shared decision-making and enhancing patient satisfaction. Feedback from decision-makers highlighted the solution's efficacy in informing personalized care strategies, ultimately improving patient outcomes.

Conclusion

The project yielded invaluable insights into patient preferences for PAH treatment, highlighting the transformative power of human-centered research. By prioritizing patient needs and experiences, the study facilitated more personalized and effective care strategies, ultimately improving the quality of life for patients with PAH.

Broader Implications

The human-centered approach exemplified in this case study offers a blueprint for addressing healthcare challenges across various contexts. By centering research and decision-making around human needs and values, organizations can unlock new insights, foster empathy, and drive meaningful change in patient care.

References

Mühlbacher, Axel, et al. "Patient Preferences in Pulmonary Arterial Hypertension, a Latent Class Analysis to Identify Preference Heterogeneity." Value in Health 27.2 (2024): 206-215.

Mühlbacher, A. C., et al. "Experimental measurement of preferences in health and healthcare using best-worst scaling: an overview. journal article." Health Econ Rev. 6.1 (2016): 1-14.

Mühlbacher A, Juhnke C, Sadler A. Sensitivity analysis in discrete choice experiments for rare diseases–an analysis within the piano-study. Value Health. 2015;18(7):A467. Mühlbacher A, Johnson FR. Choice experiments to quantify preferences for health and healthcare: state of the practice. Appl Health Econ Health Policy. 2016;14(3):253–266.