Measuring What Matters: Patient-Centered Outcomes in Research and Practice

A special issue of Healthcare (ISSN 2227-9032). This special issue belongs to the section "Healthcare Quality, Patient Safety, and Self-care Management".

Deadline for manuscript submissions: 15 December 2026 | Viewed by 733

Editors


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Guest Editor
Pritzker School of Medicine, The University of Chicago, Chicago, IL 60637, USA
Interests: patient-reported outcomes; co-design; implementation

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Guest Editor Assistant
Pritzker School of Medicine, The University of Chicago, Chicago, IL 60637, USA
Interests: patient-reported outcomes; predictive modelling; health services and outcome research

Special Issue Information

Dear Colleagues,

The purpose of this Special Issue is to capture the full lifecycle of Patient-Reported Outcomes (PROs), from conceptualization and measure development to real-world implementation and evaluation. We aim to highlight work that advances the science of PROs—ranging from psychometric evaluation and methodological innovations to the design of electronic PRO (ePRO) systems that enhance accessibility, usability, and integration into health systems.

We particularly welcome contributions that demonstrate how PRO data are applied in practice, including their role in informing clinical decision-making, improving quality of care, and strengthening patient–clinician communication. For this Special Issue, we also seek to highlight innovations in patient involvement and engagement in PRO-related research, including co-design approaches to measure development, integration of patient perspectives in ePRO system design, and strategies that ensure PROs remain meaningful and relevant across diverse patient populations. Types of submissions invited include original research, scholarly reviews, theoretical or conceptual papers advancing PRO science, and practice-based case studies on PRO integration into healthcare delivery.

We look forward to receiving your contributions.

Dr. Francesca Farina
Guest Editor

Dr. Rowida Mohamed
Guest Editor Assistant

Manuscript Submission Information

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Keywords

  • patient-reported outcomes (PROs)
  • ePRO systems
  • psychometric evaluation
  • measure development
  • clinical decision-making
  • patient engagement and co-design
  • health system integration
  • methodological innovations

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Published Papers (1 paper)

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Research

15 pages, 266 KB  
Article
Lupus Remission: How Do Patient and Physician Perceptions Align?
by Chiara Orlandi, Micaela Fredi, Cesare Tomasi, Martina Salvi, Cecilia Nalli, Chiara Bazzani, Liala Moschetti, Ilaria Cavazzana and Franco Franceschini
Healthcare 2026, 14(8), 1004; https://doi.org/10.3390/healthcare14081004 - 11 Apr 2026
Viewed by 443
Abstract
Objective: Clinical remission is a major therapeutic goal in systemic lupus erythematosus (SLE) because of its association with improved long-term outcomes. However, its relationship with patient-reported burden, quality of life, and disease perception remains incompletely understood. This study aimed to evaluate patient-reported outcomes [...] Read more.
Objective: Clinical remission is a major therapeutic goal in systemic lupus erythematosus (SLE) because of its association with improved long-term outcomes. However, its relationship with patient-reported burden, quality of life, and disease perception remains incompletely understood. This study aimed to evaluate patient-reported outcomes (PROs) in patients with SLE in clinical remission, identify factors associated with impaired health-related quality of life (HRQoL), and assess physician–patient discordance in disease activity perception. Methods: A total of 106 adult patients with SLE in clinical remission according to the definition proposed by Zen et al. were enrolled at a single rheumatology center. Patients were classified into complete remission, clinical remission off corticosteroids, or clinical remission on corticosteroids. Demographic, clinical, and treatment-related data were collected, including organ damage (SLICC-SDI) and disease activity (SLEDAI-2K). Patients completed PRO measures including SF-36, Global Health (GH), pain VAS, STAI-Y1 and STAI-Y2, Zung Depression Scale, Insomnia Severity Index, and HAQ. Disease activity was assessed by both the patient (PGA) and the physician (PhGA); a PGA–PhGA difference >25 mm was considered clinically relevant discordance. Results: Among patients in clinical remission, mild anxiety was observed in 17.1% according to STAI-Y1 and in 27.9% according to STAI-Y2, mild-to-moderate depressive symptoms in 47.1%, and mild insomnia in 25.5%. Of the 106 patients, 24 (22.6%) were in complete remission, 27 (25.5%) in clinical remission off corticosteroids, and 55 (51.9%) in clinical remission on corticosteroids. Patients in clinical remission on corticosteroids showed worse patient-reported outcomes than those in complete remission or clinical remission off corticosteroids. In multivariable analyses, poorer physical HRQoL was independently associated with functional disability, pain intensity, and depressive symptoms, whereas poorer mental HRQoL was independently associated with trait and state anxiety. Clinically relevant physician–patient discordance was observed in 22.6% of the cohort and was almost exclusively driven by higher patient than physician scores. Pain intensity emerged as the most robust independent correlate of discordance. Conclusions: A substantial patient-reported burden may persist in patients with SLE despite clinical remission. Pain, psychological distress, insomnia, and functional disability contribute to impaired HRQoL, while physician–patient discordance appears to reflect a broader mismatch between inflammatory disease control and the patient’s lived experience of illness. These findings support a more comprehensive and patient-centered approach to remission assessment in SLE. Full article
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